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newly diagnosed

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Topic: newly diagnosed
Posted By: Lee21
Subject: newly diagnosed
Date Posted: Dec 22 2011 at 11:37am
I am posting this again because I initially posted as a reply, sorry for the confusion......
------------------------------------------------------------------------------------------------------------------


I've been looking at this site for a few days since my new diagnosis 2 weeks ago to the day but I just registered so I can get connected.

I always thought I was low risk for BC and not as vigilant as I should have been with annual mammography (where have I heard that one before!). I had one 2 years ago and the report said I have very dense breasts making it difficult to be certain but otherwise normal.  Given that dense breasts is a risk factor (which I didn't know then) I wished that there was a note in the radiology report to that effect which would have motivated me to get a mammogram last year instead of being forced to this month because of symptoms. Probably would have made significant changes to my diet as well.   Hind sight is a wonderful thing.

In any event, I had a diagnostic mammogram with an ultrasound guided core biopsy which came back with a diagnosis of IDC, grade 3.  As soon as I saw it was grade 3 I knew I would be in the poorer prognosis category. The receptor status confirmed low ER, PR expression (4%, 3% respectively) and HER2 1+.  By ultrasound the mass is about 1.7 cm so I am hoping that it will stay < 2 cm with the actual sample.

I met with the breast care team at the comprehensive cancer care center close to where I live and was recommended to have a central lumpectomy with removal of the nipple-areola complex because I had discharge.  I haven't had staging yet -- the sentinel node bx will be done at the time of surgery. I am probably going to get the chemo followed by RT, all very familiar sounding to all of you.

I am looking into getting a second opinion at another cancer center out of state but am concerned that any delay would affect my survival chances.  Any thoughts on that anyone?

It is comforting to see the resources that are available on this website (chemo tips, radiation tips, etc.) and that there will be people to connect with in the days to come.



Replies:
Posted By: Grateful for today
Date Posted: Dec 22 2011 at 12:27pm
Hi Lee,

Welcome to the site.
Will post again but just had to post now about "grade 3".
There is a difference between grade and stage.
The stage is not known until the node status is known.
So, one could be a Stage 1 even with a grade 3 tumor.
So, put a hold on the poorer prognosis category
......you do not have all the info yet to know prognosis.


From NCI:

What is tumor grade?
Tumor grade is a system used to classify cancer cells in terms of how abnormal they look under a microscope and how quickly the tumor is likely to grow and spread. Many factors are considered when determining tumor grade, including the structure and growth pattern of the cells. The specific factors used to determine tumor grade vary with each type of cancer.

What is staging?
Staging describes the severity of a person’s cancer based on the extent of the original (primary) tumor and whether or not cancer has spread in the body.
Common elements considered in most staging systems are as follows:
Site of the primary tumor.
Tumor size and number of tumors.
Lymph node involvement (spread of cancer into lymph nodes).
Cell type and tumor grade* (how closely the cancer cells resemble normal tissue cells).
The presence or absence of metastasis.


It is very important to know that there are many survivors of triple negative breast cancer.
It is important to know that many newly diagnosed and those with recurrences
post on this site. But there are many survivors who do not post.....they are so
busy living their lives. In fact, there are a few forum topics about survivors:
http://forum.tnbcfoundation.org/survivors-needed_topic8221.html - http://forum.tnbcfoundation.org/survivors-needed_topic8221.html
http://forum.tnbcfoundation.org/any-long-term-survivors-out-there_topic9365.html - http://forum.tnbcfoundation.org/any-long-term-survivors-out-there_topic9365.html

With caring and positive thoughts,

Grateful for today..............Judy






Posted By: Lee21
Date Posted: Dec 22 2011 at 5:47pm
Judy
Thank you for the information.  I do know the difference between grade and stage but I am glad you made the point for this forum. But you are right to be hopeful -- TNBC is a heterogeneous disease that scientists are beginning to understand.  The complete genome sequence information was obtained for several TNBCs and they are finding activation of intracellular pathways not seen in the other BCs.


Posted By: overwhelmed
Date Posted: Dec 22 2011 at 6:31pm
Lee,
Try not to beat yourself up too much about the delay in your mammogram. It was a clean mammogram that kept me from going to the dr when I noticed a quarter-sized indentation in my breast. That happened weeks after the mammogram. I put off going to the dr until I felt a lump, which turned bout to be quite large. In my case the yearly mammogram convinced me I was fine. I know better now. Besides TNBC grows pretty fast so it's difficult to know if it would have been seen a year ago.  Good  luck to you. Waiting is the most diffcult  Once you have a plan, you will feel more in control.


-------------
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-


Posted By: kirby
Date Posted: Dec 22 2011 at 11:56pm
Lee,
 
I'll echo overwhelmed about the delay. It had only been 18 months since my last mammo when I was dx with a 2 cm tumor. For my age at the time, recommendation was every 1-2 years. You'll read many times of women discovering tumors right after having had mammo's that hadn't been detected by the mammo.
 
As far as timing on getting a second opinion, you need to do what you will be most comfortable with. We all have a different fear level. Mostly we don't want to live with regrets of what we shoulda, coulda, woulda .


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: Grateful for today
Date Posted: Dec 23 2011 at 1:23am
Hi Lee,

It sounds like you are very educated already about breast cancer and TNBC
in particular.
Will post some info which you may already know.
If this is too much info all at once, apologize. Read in parts or come back when you
are ready for more info. Wanted to put all this info in one place for you.
Again, you probably know most of it. Feel better to post than assume.

In regards to your question regarding delay or time until start of treatment:
The best answer on how much reasonable time you have to make a decision
on your treatment plan would be to ask the oncology MD at the comprehensive
cancer center where you were already seen. That MD knows your case best and
could give you the best answer.
Not sure there is a black and white answer.
Maybe someone will post who has more definitive info.
Those with TNBC will take into consideration that TNBC can be fast growing and
it is not clear if there is current info specifically re: time until treatment start and
TNBC. So, it seems info available is for all breast cancers.
That being said, this is what I found on the web (in regards to all breast cancers):
(Again what your MD says about time is best. Web references given to give a
feel for what the literature says about this matter).


http://www.melbournebreastcancersurgery.com.au/delay-between-diagnosis-surgery.html - http://www.melbournebreastcancersurgery.com.au/delay-between-diagnosis-surgery.html
Article by breast surgeon in Australia re: delay between diagnosis and surgery.
If I am reading the article correctly, article says 40-60 days delay does not effect
oncologic outcome.   (60 days seems long to me but that is what the article states)
? date of article. article does have a 2010 reference.

http://www.ncbi.nlm.nih.gov/pubmed/21494124?dopt=Citation - http://www.ncbi.nlm.nih.gov/pubmed/21494124?dopt=Citation
from MD Anderson in Texas. only node negative in study.   delay: 1-132 days.
Conclusion: Modest time intervals from imaging to surgery are not significantly associated with change in tumor size; thus, patients may undergo preoperative work-up without experiencing significant disease progression.

http://www.ncbi.nlm.nih.gov/pubmed/20853049 - http://www.ncbi.nlm.nih.gov/pubmed/20853049
from MD Anderson in Texas.
Conclusion: Interval from diagnosis to treatment of breast cancer within the same cancer center was longer at the CH (community hospital) than the UH (university hospital). There was, however, no effect on overall survival. Time to treatment may not be a meaningful indicator of cancer care quality.
(A total of 1337 patients were included; 634 patients were treated in the CH and 703 in the UH. Interval to treatment was longer in the CH compared with the UH (53.4 ± 2.0 vs 33.2 ± 1.2 days; mean ± standard error of the mean [SEM], P < .0001))

For me, I started chemo about one month after core biopsy and FNA (fine needle aspirate
of one lymph node). Month to get initial appts and second opinion. MD was comfortable
with the month.

Mentioning chemo and surgery.
Have the pros and cons of which to do first (chemo vs surgery) been explained by the first cancer center?
As you mentioned, there are at least 6 sub-types of TNBC.
http://www.jci.org/articles/view/45014/files/pdf - http://www.jci.org/articles/view/45014/files/pdf
Thus, TNBC need to consider knowing if their tumor is responsive to chemo for the opportunity
to switch to a different chemo if needed versus removing the tumor first.

You either have already seen or will soon seen the discussion re: chemo and the order of
chemo meds if your chemo plan will include: ACT   (adriamycin, cytoxan, taxol) or T-FEC
(taxol, 5-fluorouracil, epirubicin, and cyclophosphamide{cytoxan) )
see: forum topic: http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771.html - http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771.html
This was a retrospective study. Some oncologists prefer prospective studies.
So, not a black and white situation.
Believe some comprehensive cancer centers due the taxol first and others do the taxol last.

2 important matters for newly diagnosed: Vitamin D and BRCA testing.
Vitamin D:   Many TNBC newly diagnosed have low Vitamin D levels.
                      If you do not know your level, you may wish to discuss with your MD (so if it is low
                           a plan can be made)
                     see: forum topic: http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html - http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html
BRCA testing: Now recommended for TNBC under 60 yrs to see a certified genetics counselor about
                                evaluation/consideration for BRCA testing.

And finally:
Will repeat many TNBC tumors are found between mammograms.
So even if you had a mammogram a year ago, there is no guarantee, the tumor would have shown.
Most realize a healthy diet is important. However, I remember what the oncology nutritionist told me:
    even vegetarian marathon runners get breast cancer!
And for hope: love the folowing quote:
Found this statement by Jerome Groopman, MD in his book: "Anatomy of Hope" helpful.......usually
have to read it twice to understand it.
" Each disease is uncertain in its outcome and within that uncertainly we find real hope, because a
tumor has not always read the textbook, and a treatment can have an unexpectedly dramatic
impact. This is the great paradox of true hope. Because nothing is absolutely determined, there
is not only reason to fear but also reason to hope."
He also says: "Hope is a belief and expectation."

With caring, positive and hopeful thoughts,

Grateful for today...............Judy






Posted By: Grateful for today
Date Posted: Dec 23 2011 at 1:27am

Addendum: There is a post by Steve on "Newly diagnosed" for you.   (Welcome new members forum)
                      Again, you have probably already seen it.....but just in case.      Judy


Posted By: Lee21
Date Posted: Dec 23 2011 at 4:00pm
Judy,
That was a lot of very useful information.  I am very impressed with how knowledgeable people using this forum are.  I guess we all become experts when our lives are at stake.
Although the breast care clinic here uses a team approach, I got to speak with only the surgeon.  Even though they said chemo and RT are down the road, I didn't meet with any of them.  Disappointed.
I asked about neoadjuvant -- the surgeon hesitated and I filled in for her (said too small) -- I should not have finished her sentence for her.
My vit D level was borderline 2 years ago (32ng/mL) despite being on 1000 IU per day so I upped the dose to 3000 IU (hopefully no toxicity) but we don't get sun in Michigan for half of the year.
My second opinion team wanted an MRI evaluation before I go out there -- it wasn't something that was mentioned by the local team.  Given the dense breasts and the fact that US was done only on one breast, it would seem to make a lot of medical sense to have the MRI and make sure the lumpectomy will get everything.  It will shake my confidence in the locals if the MRI showed something more extensive.
I asked about BRCA testing but they said only for women less than 50 years old.
I finally got my surgery date scheduled -- a full 41 days after Dx.
It's been hard to get information on how fast BCs grow in humans; I found 2 studies,
(1) http://www.ncbi.nlm.nih.gov/pubmed/18466608
Tumor growth varied considerably between subjects, with 5% of tumors taking less than 1.2 months to grow from 10 mm to 20 mm in diameter, and another 5% taking more than 6.3 years. The mean time a tumor needed to grow from 10 mm to 20 mm in diameter was estimated as 1.7 years, increasing with age. The screen test sensitivity was estimated to increase sharply with tumor size, rising from 26% at 5 mm to 91% at 10 mm. Compared with previously used Markov models for tumor progression, the applied model gave considerably higher model fit (85% increased predictive power) and provided estimates directly linked to tumor size.
(2) a Russian study (not sure about the technical quality) claiming it could be as short as 21 days for doubling time of a tumor mass.
Neither study stratified the BCs by subtype.

Hopefully my tumor isn't growing at the clipper rate.




-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Lee21
Date Posted: Dec 23 2011 at 4:06pm
Judy
Where is the link to the guideline for BRCA testing (under 60)? Thanks.


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: 123Donna
Date Posted: Dec 23 2011 at 4:24pm
Lee,

Here's a link discussing BRCA Testing:

http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html?KW=BRCA - http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html?KW=BRCA

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: SagePatientAdvocates
Date Posted: Dec 23 2011 at 5:23pm
Dear Lee,

BRCA testing only for women under 50 is poor advice..The new guidelines say <60.

Have you see Dr. Lisa Newman?

http://surgery.med.umich.edu/general/contact/faculty/lanewman.shtml - http://surgery.med.umich.edu/general/contact/faculty/lanewman.shtml

good luck to you,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: ds21
Date Posted: Dec 23 2011 at 5:27pm
Interesting because the Cancer.gov site is still listing a guideline of BRCA1/2 screening for age <50

http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/HealthProfessional/page2

DS21




Posted By: lisadi1963
Date Posted: Dec 26 2011 at 8:26pm
I am a newbie to this as well.  I was just diagnoised with IDC 12/13/11. I am triple negative and have had the BRCA test.  I should get the results of that in a few days.  I am trying to read all the information that I can get.  It's a little overwhelming to say the least.  I have read that a lot of triple negative cancers will come back with a positive BRCA test.  Is that true? 


Posted By: SagePatientAdvocates
Date Posted: Dec 26 2011 at 9:11pm
Dear Lisa,

Welcome to our family and sorry you have reason to be here..

The short answer to your question is no...most TNBC is not BRCA+...

BUT if you are BRCA1+ most likely you will have TNBC if you have breast cancer but the converse is not true..

good luck with your BRCA test...I will be rooting for a negative test result for you..please let us know what the result is if you are comfortable doing so.

all the best,

Steve




-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Grateful for today
Date Posted: Dec 27 2011 at 2:08am

Donna:   Thank you for posting the link to info on BRCA testing.


lisadi,
    Lots of caring and positive thoughts to you as you and your treatment team develop your
    treatment plan.   Many of us found that initial time difficult, stressful and anxiety provoking.
    Do know that once one has a treatment plan....and then actually start treatment, one does
    feel better. And yes, all the information is definitely overwhelming.
             With positive thoughts,               Judy


Lee,
   Will post knowing that you may already be aware of info. As previously said, would rather
       post then assume.
   Vitamin D:
       Vitamin D importance and forum topic noted above. Link now repeated:
        http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html - http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html
       Since there are 27 pages on this forum, wanted to point out:
        on page 26: Why should you keep your vitamin D level around 50 ng/ml?
                                September 19, 2011 -- Dr John Cannell
                                (note: You may want to discuss with your MD as beleive there is
                                  ....you guessed it....a difference of opinion on optimal level and
                                 optimal range for D3.)
        also on page 26: Latest case-studies on vitamin D toxicity
   Pre-surgery MRI:
        Last year, in my experience, there was a difference of opinion by the surgeons
           at 2 major facilities connected with a comprehensive cancer center on routine
           pre-surgery MRI.
        There could be more definitive info this year re: routine pre-surgery MRI (after mammogram).
        Mentioning this as you said you experienced one center not asking for a MRI and other
            other center requesting the MRI before consult.
   Metformin:
        There are some clinical trials with metformin which you may want to ask your MD about
                 if you are interested. Your MD will know if any metformin trials are ones appropriate
                 for you to consider and will know all the trials not just the ones listed below.
        There are some where you take metformin prior to surgery.
                 ClinicalTrials.gov Identifier:     NCT00984490
                 ClinicalTrials.gov Identifier:     NCT00930579
        There is another trial which is metformin vs placebo after treatment completed.
               ClinicalTrials.gov Identifier:      NCT01101438
        There was an animal research article.....regarding metformin when used at same time as
               adriamycin.   Your MD might have more info what the opinion of clinical providers
               is regarding that article.
               http://cancerres.aacrjournals.org/content/69/19/7507.full - http://cancerres.aacrjournals.org/content/69/19/7507.full
        There are at least 3 topic forums re: metformin on TNBC Talk:
               http://forum.tnbcfoundation.org/using-metformin_topic7990.html - http://forum.tnbcfoundation.org/using-metformin_topic7990.html
               http://forum.tnbcfoundation.org/metformin-trials_topic8690.html - http://forum.tnbcfoundation.org/metformin-trials_topic8690.html
               http://forum.tnbcfoundation.org/asking-questions-on-metformin-trial_topic9079.html - http://forum.tnbcfoundation.org/asking-questions-on-metformin-trial_topic9079.html

   With caring and positive thoughts.................Judy                    
   


Posted By: Grateful for today
Date Posted: Dec 27 2011 at 2:47am
Lee and all,

CLARIFICATION of my post on 12/23/11.

#1
In regards to your question regarding delay or time until start of treatment:
***on re-reading my post, the following may have not stood out enough***
The BEST answer on how much reasonable time you have to make a decision
on your treatment plan would be to ask the oncology MD at the COMPREHENSIVE
cancer center where you were already seen. That MD knows your case best and
could give you the best answer.    (or the consult COMPREHENSIVE center MD)

#2
That being said, this is what I found on the web (in regards to all breast cancers):
(Again what your MD says about time is best. Web references given to give a
feel for what the literature says about this matter).
*** On re-reading the above line, instead of saying to give a feel for what the
      literature says about this matter......I might have expressed my thought better
      by saying.......here's what some articles (2 from NCBI-NIH) are saying
      BUT remember one article was based on info from 2003-2006 and another
      from 2005-2008 information
     ....... or maybe have just left it at "ask your MD" after now re-looking at the
     dates the information was from.

Hope I did not confuse anyone. Simply, ask your MD about the time you have to make
       your treatment decisions.

With caring, positive and hopefully clarifying thoughts to all,

Grateful for today..............Judy
       


Posted By: Lee21
Date Posted: Dec 27 2011 at 8:18am
Judy
Thank you for the clarification (BTW, I started posting this reply, then hit the back arrow on my browser to read the message, and when I hit the forward arrow, what I had written has disappeared; is it floating somewhere in space?).

I have only seen the surgical oncologist so far although my case was reviewed by the center's tumor board.  I have not seen the medical oncologist or anyone else. The surgeon says it's fine to wait a few weeks but it is not clear how much experience they have with TNBCs.  I am concerned because TNBC has a reputation of being an interval cancer and behaves aggressively.

The role of MRI is controversial.  Someone from the center that I am going to (U of M) has written a position paper and said that MRIs can lead to false positives, delays and unnecessary surgeries and not warranted as routine for pre-op. 

Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: ds21
Date Posted: Dec 27 2011 at 9:38am
One highly cited study on the use of MRI in preoperative evaluation is a review by Dan Hayes from Michigan

http://www.ncbi.nlm.nih.gov/pubmed/19679690

A couple of interesting findings.  In 11-24% of cases the MRI finds an additional foci of cancer in the ipsi-lateral breast.  This is consistent with older pathology results examining tissue removed at mastectomy.   The authors argue that post-lumpectomy radiation therapy will take care of these foci, but by that logic, why do a lumpectomy at all?

In 6-15% of cases MRI finds a lesion in the contra-lateral breast, but only about half of these turn out to be cancers.  The authors argue that the false positive rate is as high as the true positive rate leading to a lot of unnecessary work ups and confusion.

Note - in neither case is TNBC split out as a subgroup.

Finding multiple primaries, either ipsi- or contra-lateral, would raise concern about a BRCA mutation, and genetic testing could be useful particularly in TNBC.  Multiple primaries, with or without a documented BRCA mutation, would also raise prophylactic mastectomy as an option.  Finally, depending on where the primary is, an MRI might be useful in surgical planning, for example assessing the need to include the nipple in a lumpectomy or assessing chest wall spread in a deep lesion.   On the other hand, going to through multiple imaging studies and biopsies, especially if it ends up being a false positive, could confuse, dishearten and delay treatment of the primary tumor.  Up to you and your physician, but something to discuss.  Bottom line, there have not been any randomized controlled trial to assess the impact of having a preoperative MRI on long term survival so we really do not know.

David


Posted By: SagePatientAdvocates
Date Posted: Dec 27 2011 at 10:18am
Dear David,

thank you very much for your informative, thoughtful, post.

I carry the BRCA1 mutation and passed it on to my daughter...

Regarding BRCA testing...under NCCN guidelines (I think first published March of this year) ANY woman with TNBC under the age of 60 should be tested for the BRCA mutation, even absent family history...and since the guidelines came out it has been my experience that most major insurance companies will pay for the testing for women in our community <60.

Regarding MRIs....from my experience they remain the diagnostic tool most favored by major cancer centers for women at high risk and especially for younger women with dense breasts. There was a recent paper of the subject that showed MRIs being more efficient than mammograms and yes there are still too many false positives and that is a problem and also mammograms seem to be able to more easily detect certain breast cancers so many high-risk clinics do an alternating surveillance program of MRs and mammograms.

all the best,

Steve

Coverage Policy

CIGNA covers BRCA1 and BRCA2 genetic testing for susceptibility to breast or ovarian cancer in adults as medically necessary for ANY of the following:

biologically-related individual from a family with a known BRCA1 or BRCA2 mutation personal history of breast cancer and ANY of the following:

diagnosed at age 45 or younger diagnosed at age 50 or younger with EITHER of the following:

o at least one close blood relative* with breast cancer at age 50 or younger o at least one close blood relative* with epithelial ovarian, fallopian tube, or primary

peritoneal cancer diagnosed with two breast primaries (includes bilateral disease or cases where there are two or

more clearly separate ipsilateral primary tumors) when the first breast cancer diagnosis occurred

prior to age 50 diagnosed at age 60 or younger with a triple negative breast cancer (my emphasis)


http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0001_coveragepositioncriteria_genetic_testing_for_breast_and_ovarian_cancer.pdf - http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0001_coveragepositioncriteria_genetic_testing_for_breast_and_ovarian_cancer.pdf


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: ds21
Date Posted: Dec 27 2011 at 11:18am
Steve,

A couple of questions about BRCA testing.  My understanding is that Myriad Genetics is the only lab doing the test, and that their screen is a process involving multiple technologies rather than a single test, but they have not moved to complete genomic sequencing.  BRCA1 and BRCA2 are large genes and there are many variants in both, some benign naturally occurring SNPs and some pathological.  At this point, the costs of Myriad's analysis is comparable to complete genome sequencing.  Is anyone using complete genome sequencing to evaluate the BRCA1 and BRCA2 genes?  If complete genomic sequencing was done, are there ways to work with Myriad and their extensive database to evaluate the risk?

Genes can be silenced epigenetically as well as through primary mutations.  Does Myriad's testing evaluate expression and function or just genomic sequence?

BRCA1 and BRCA2 are involved in DNA repair pathways. In other genes, e.g. P53, the pathway may be functionally inactivated by mutations in upstream and downstream genes even when P53 itself is intact.  Is the same true for BRCA1 and 2?  Do any of the tests look at function of the whole DNA repair pathway function, or just the structure of the BRCA 1 and 2 genes?

David



-------------
Co-survivor


Posted By: Wade
Date Posted: Dec 27 2011 at 12:20pm
Hi Lee,

I don't know if my response is too little, too late, but I know of at least one woman who went to have a mammogram for a lump in one breast, and they did both breasts on a whim (according to the husband), and found the "lumpy" breast was fine, but the other one had a tumor. My wife's docs ended up going with mammo, and US, and later MRI.

I also see you're nearby - I live about halfway between Detroit and Port Huron. We ended up going with Michigan Breast Care Specialists (out of St. John Hospital in Detroit). We met with one of each of the tumor board doctors (individually - surgeon, medical onc, radiation onc, social worker and nutritionist) after the tumor board meeting. We brought a tape recorder with us, and found it quite helpful as I remembered at least one thing exactly backwards from what the doc said. My wife hardly remembered anything.

We went to Karmanos for our second opinion, and they suggested the same treatment plan - chemo first, then surgery, then radiation. My wife has about 10 rad. treatments left. She did AC first, then was supposed to do Taxol, but none was available, so she was started on Abraxane instead ( same active ingredient, but nano-sized particles and bound to albumin). There is also at least some evidence that Abraxane may work better than Taxol, due to better absorption caused by the smaller particle size. I can't cite the study, but if you nose around you may see it.  You will also want to see Steve's post re Taxol's potential for severe reaction from the carrier solvent.

So far, my wife is one of the lucky ones. The chemo treatments completely eliminated any evidence of cancer in her breast, and the tumor started shrinking within the first few weeks of starting chemo.

Feel free to pm me if you like - I'm a terrible typist and I don't have my wife's files with me today, but I'd be glad to give you any information I have...

I wish you the best of luck with your treatment.

Wade    


-------------
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED


Posted By: ds21
Date Posted: Dec 27 2011 at 1:29pm
Thanks, these drug shortages are one more hassle we don't need right now.

David

-------------
Co-survivor


Posted By: Grateful for today
Date Posted: Dec 29 2011 at 12:08am
Hi Lee,

RE: (BTW, I started posting this reply, then hit the back arrow on my browser to read the message, and when I hit the forward arrow, what I had written has disappeared; is it floating somewhere in space?).

Think when the post that one has just written disappears.......it is gone....as if the words were never there.
Don't think one can use the forward and backward arrows.....if one does, post is gone.
Maybe some one who knows for sure might post.

Also, there is a work around that a member put on the forum about how to avoid losing one's post.....
unfortunately, I forgot what it was. Maybe that member might post again if member sees this.
If I know I will be doing an involved post, I will do it on Word and then copy and paste.....but I
think links don't transfer and I have had to do the link again.

With caring and positive thoughts,

Grateful for today.............Judy


Posted By: SagePatientAdvocates
Date Posted: Dec 29 2011 at 6:48am
Hi Judy,

I try...and all too many times I forget to do it...especially when I am writing a long post (what’s that some of you are saying...too many times and too long..nice, no respect Smile) to write my post in word and save it
and then cut and paste it onto the thread...

I have lost so many posts...and at times I am not sure exactly why I did but early on I had written for an hour and then I lost it and I was just so angry/exhausted I had to re-group.

all I can tell you is that you are doing a marvelous job for all of us and please keep up your good work and maybe using word can help?

all the best,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: ds21
Date Posted: Dec 29 2011 at 7:22am
I find the edit, grammar and spell check features of Word. If you know it is going to be a long post, fire up a real word processor and just copy paste when you are done.

-------------
Co-survivor


Posted By: Grateful for today
Date Posted: Jan 09 2012 at 11:06am
Hi Lee,

Would like to thank you for all your great and informative posts and articles you have
posted on several forum topics.......much appreciated.

Noticed on one of the other forum topics that you posted on 1/6 "finally able to set up my
2nd opinion trip to UCSF next week" (which would be this week).
So, sending many positive thoughts for your 2nd opinion this week.
Sincere hopes that you receive the information that will help you with your treatment
plan decisions.   You have researched information and are doing all the right things.
You will make the best decision for you.

With caring , positive and hopeful thoughts,

Grateful for today................Judy


Posted By: Lee21
Date Posted: Jan 09 2012 at 4:55pm
Hi Judy
Thank you for your kind thoughts.  I feel I have a personal connection with many on this forum already!
I am hoping my second opinion will give the same recommendation -- golly, what to do if two disparate opinions? None of us have the proverbial looking glass...reminded of Steve Job's Stanford commencement speech in 2005 ( http://www.youtube.com/watch?v=D1R-jKKp3NA - http://www.youtube.com/watch?v=D1R-jKKp3NA ) -- (a very inspiring one for those who haven't heard it).  He gave the speech a year or so after his diagnosis of pancreatic neuroendocrine cancer. Basically one of the important messages of his speech is to live each day like it's your last and ask yourself if you want to be doing today what you are doing if it is the last day of your life. It's given me a lot of pause for thought especially since my diagnosis.


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Lee21
Date Posted: Jan 12 2012 at 11:09am
Hi everyone

I had my 2 nd opinion yesterday at UCSF and they couldn't have come up with a more divergent recommendation from the one from U of M. UCSF strongly recommends neoadjuvant whereas U of M recommended lumpectomy first. Both agree the order will not affect survival; but as you all know neoadjuvant will provide prognostic information on chemo sensitivity. 

UCSF says I would be a candidate for the ISPY-2 trial but U of M is not a participant and I would rather stay local for my treatment than drive 6 hrs to Chicago the nearest site.

 It seems like it comes down to two points 1) UCSF believes in the MRI sizing of my tumor at 3 cm which is almost twice the size seen by ultrasound that U of M is basing their recommendation on ( it seems that pre-op MRI is controversial although I don't think there is disagreement about the relative accuracies of the different modalities).  Not shrinking the tumor down would result in substantial removal of tissue. UCSF doesn't think a mastectomy is indicated.  2) the prognostic importance of neoadjuvant therapy.

I am not sure I have time for a third opinion - it's been more than a month since my surgery and more than two months since the onset of symptoms (discharge).

I know that people on this forum have experience with either approach.  This has been discussed elsewhere in other threads but sometimes it is hard to pick up on those.

I would really appreciate your input on this to help me with my decision.  Why did you go with the approach you took ? Did it work for you? Do you have regrets?




-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Grateful for today
Date Posted: Jan 12 2012 at 11:48am
Lee,

Thank you for sharing the info from your 2nd opinion.
Do you feel comfortable sharing:
        Has either UCSF or U of M advised you the time frame within which to make your decision?
        What is the chemo protocol in the ISPY-2 trial?
        Was there another chemo protocol option recommended by UCSF (or U of M)
              with the pros and cons of ISPY-2 vs other chemo protocol offered?   
       
Will be out for the afternoon and will post later tonight.

From your posts, it is clear you know how to research things and make excellent decisions.
With empathy, I acknowledge the importance and challenge of the treatment decisions.
One realizes that with the same information........the best decision for each person could
be different and still be the best for them.
There is no doubt in my mind that you will make the best decision for you.


With caring and positive thoughts,

Grateful for today.....................Judy


Posted By: Lee21
Date Posted: Jan 12 2012 at 12:10pm
U of M didn't provide a time frame although I am scheduled for surgery next Thursday ; UCSF says within 3 weeks.
From my recollection, the ISPY trial has the standard therapy of taxane x 12 weeks followed by 4 weeks of AC and an investigational drug added to 4 of the 5 arms ( randomized trial with mammoprint profiling) during the taxane component.
There was mention of another trial at a site closer to home (I don't remember the name) which included Avastin but neither the surgeon nor I an a fan of Avastin in this setting (significant morbidity).


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Wade
Date Posted: Jan 12 2012 at 12:23pm
Good morning, Lee

I'm glad to hear that you were able to get a second opinion quickly - I'm sorry it diverged  from the first.

My wife also had mammogram, ultrasound and MRI. The mammogram showed a lump 3.5 x 3.9cm, and on the same day the ultrasound report says it was 3.1 x 2.5 x 3.1cm. A fine needle biopsy was done on the same day as the US and mammogram. There was some swelling (both the radiologist and surgeon's opinions) caused by the needle biopsy. We didn't go for the MRI until 14 days later, at which time the report sized the lump at 3.6 x 3.2 x 3.5cm. So we don't really know if this is a growth,swelling, or measurement difference from using a different technology or ?

As to the decision on whether to go with lumpectomy first, or chemotherapy, my wife went with the chemo. She "checked out" after the diagnosis, and left most of the research up to me. I read many of the arguments here, and we met with the surgeon first (Dr. Cheryl Wesen), who suggested neoadjuvant therapy. I said  something like "You're a surgeon, and you're sending us away - why?"

She said that in my wife's case there were two reasons. One was cosmetic - with the size of the lump so large in comparison with her breast size, if she performed the surgery first, she would have to do a mastectomy. If she were to do chemo first, the tumor might shrink, and if it shrunk enough, she could then safely perform a lumpectomy.

Secondly, as you mention, doing chemo first allows the oncologist to see if the tumor is shrinking. If it does, great. If not, try another cocktail. Obviously, if the surgery is done first, you lose this indicator of efficacy. It seemed to me a very compelling argument. I wasn't the one taking the treatment, so it wasn't my decision,but the thought of going through the chemotherapy process and not knowing whether it had done any good sounded terrible to me. What if it actually made the tumor grow, as some have reported on one of the drugs (Taxol) recommended for my wife? Would I have been better off NOT doing chemotherapy at all, and just having the surgery and radiation? Why did I put myself through chemo, if it didn't do anything?

It seemed the only upside to surgery first was to "get the darn cancer out of my body". According to our tumor board team, they said that by the time you have a detectable lump, the cancer has likely been in your body for years, and even in stage 1 cancers, micrometasteses have been found in bone marrow. This made it seem even more important to keep the indicator of efficacy (the tumor) around until you found the drugs that worked. We found these arguments the most compelling

I am not questioning anyone else's decision to do surgery first.  I can't imagine having to make the call. I was only a spouse, and I found it tough.

It is still early days, but it looks like my wife's choice was right for her. The first cocktail shrunk the tumor, there was no evidence of cancer found in the subsequent surgery, and she just finished radiation yesterday. I should also say that my wife's response is not necessarily typical. Her medical oncologist (Dr. Carrie Dul), said that her response to chemo was one of the best she had seen. We still took comfort in knowing that if the first drugs hadn't worked, she could have switched to a different regimen.

Anyway, that's my two cents, I'm sure you will hear from more knowledgeable and better informed people here. Good luck with your decision. It sure seems to me that you are doing the best you can to inform yourself. I wish you all the best.

Wade

   

  


-------------
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED


Posted By: Lee21
Date Posted: Jan 12 2012 at 11:28pm
Wade thank you for sharing your wife's medical timeline. I told U of M the recommendation from UCSF and they are reviewing again my case.

-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Grateful for today
Date Posted: Jan 13 2012 at 1:42am
Lee,

Reconfirming what we all know, one needs an individual plan for one's individual situation made
with one's physicians. With the same clinical information, the best plan can vary with the
varying factors one brings to the treatment plan.

This was my experience.
Diagnosis: Normal mammogram 2009. Normal MD breast exam summer 2010.
                     Felt right breast lump end of Sept 2010.
                     Initial size varied by 10/10 clinical exam/mammogram/ultrasound.                   
                     Right breast mass core biopsy: IDC. Invasive ducal carcinoma, grade 3. Ki67:80%   TNBC.
                     FNA: positive malignancy.
                     Clinical:   T2N1 M0
Treatment plan:
    Initial treatment plan consult:
        Advised I could:   Do standard plan of care: dose dense AC q 2 weeks x2. Taxol q 2 weeks x4.
                                             either neoadjuvant (before surgery)   or   adjuvant ( after surgery)
                                       Participate in a clinical trial.   4 arms: one standard DD ACT.
                                             other ACT and carboplatin.   other ACT Avastin.
                                             other ACT and carboplatin and Avastin.
       Due to my concerns of increased risk of serious side effects if I was in the ACT/carboplatin/Avastin
                 arm, I did not do the clinical trial.   I felt if the ACT was not working, another chemo could be
                 tried.
       For me, pros of neoadjuvant were:
                                  If ACT did not decrease tumor size, chemo could be changed.
                                  Surgery would take care of local mass.
                                  I wanted to ensure no distant spread with chemo ASAP.
                     cons of neoadjuvant were:
                                  The possibility that while trying ACT the tumor could grow and /or there
                                        could be cells going to distant organs IF ACT did not work.
                     pros of adjuvant were:
                                  Not allow the tumor to grow and not give any more time for cells to
                                  possibly travel to distant organs.
                     cons of adjuvant were:
                                  If the tumor was removed, then there would be no way to know if the following
                                  chemo was the chemo my tumor was sensitive to (in case there were any
                                  residual cells)
   2nd opinion:   Same as initial
   When I had a complete clinical response before the end of ACT, was glad I had neoadjuvant.

Surgery:
I decided on a unilateral mastectomy.   ALND (due to prior FNA + of one axilla lymph node)
       This was a difficult decision for me. Intellectually, I knew mastectomy was the best choice
       for me. But I would go and forth about what to do.
       I was aware that OS (overall survival) was the same for lumpectomy/radiation or mastectomy.
       When I asked for the study or numbers for OS for TNBC re: lumpectomy/radiation or mastectomy
       no one could give me any (and I could not find any).    I choose the mastectomy knowing that
       in the future it may be proved that for TNBC OS is the same whether lumpectomy/radiation or
       mastectomy. I preferred this rather then having future studies show OS for TNBC better with
       mastectomy (or mastectomy with radiation) then lumpectomy with radiation.       
       (As it turned out, there was the Canadian study referred to elsewhere on the forum that did
        look at lumpectomy/radiation or mastectomy....but not mastectomy with radiation which is
        what my final plan included)       
Unilateral mastectomy. ALND x 2 levels.   Path: ypT1cN1a
Radiation x 29 treatment days.
             Right chest wall. Scar bolus every other treatment day.
             Adjacent lymph nodes/high tangential field.      (not full axillary field due to ALND)
             (Internal mammary nodes field not included)
             Right supraclavicular lymph nodes area.
              
Think there is the possibility that since you told U of M the recommendation from UCSF and they are reviewing again your case........and now U of M has the MRI result of a possible 3 cm tumor.............
U of M recommendation might now turn out to be the same as UCSF.

Again, you have done such great research work.
You will make the best decision for you.

Sending lots of caring and positive thoughts,

Grateful for today................Judy

                  
                                             
       


     


Posted By: Wade
Date Posted: Jan 13 2012 at 7:11am
Hi Lee,

It struck me after my post that I sounded pretty strident - I guess this is all a little too close in time for me be dispassionate...

There must be sound medical reasons to do surgery first, else why would they still recommend it? I hope others who have heard the arguments for surgery first will post as well. It would be very interesting to hear the reasoning for it.

Please let us know what the people at U of M say.

All the best,
Wade


-------------
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED


Posted By: Wade
Date Posted: Jan 13 2012 at 7:18am
Wow, Judy!

Your post was very informative. It's clear you did your homework. Thank you for explaining your thought process so well.

Best regards,
Wade



-------------
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED


Posted By: christina1961
Date Posted: Jan 13 2012 at 9:03am
Lee, I had neoadjuvant chemo. My prechemo scans included a bilateral MRI, mammogram and ultrasound.  I was originally thought to be node negative, but one of the ROs actually thought two nodes looked a little big in the MRI and I turned up, after surgery, to have two positive nodes.  The neoadjuvant chemo only gave a partial response but I had such a good clinical response, the oncologist thought I had gotten a pcr.  I was very disappointed. I am still glad to have received neoadjuvant chemo but I would have, in my case, gone on a clinical trial of neoadjuvant in retrospect because I could have received "standard of care" chemo afterward if the first round of chemo did not work-- or I would have insisted on ultrasounds or some type of scan during my neoadjuvant period.  Clinical exams just don't cut it and I questioned that in my mind the entire time and didn't speak up.  That is probably my biggest regret. I had a unilateral mastectomy. My oncology surgeon prefers that after neoadjuvant chemo - and I had a full ALND, two levels.  I followed up with elective radiation, four fields, with a boost.  I have no regrets having the mastectomy because the regional recurrence rate is less, and I'm glad that I went ahead with the radiation.  It is hard to lose a breast, however.  I saw the plastic surgeon yesterday and it looks like I will have to have a lat flap due to the radiation, but his photos are absolutely amazing.  I feel so much better after having the consultation.  I do not have the BRACA gene but due to the presence of colon, prostate, and esophageal cancer on my father's side of the family, I believe there is some problem that has been passed on.  I may elect to have the other breast removed at the time of reconstruction.  I am beginning the research process soon for that issue. 

-------------
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.


Posted By: Lee21
Date Posted: Jan 13 2012 at 10:09am
Thank you Judy, Wade and Christina for sharing. I will be seeing a med oncologist at U of M on Monday who will be re -presenting my case to the tumor board.
I will also posit the same question over on the "chemo before surgery" forum to see if I can grab more responses.


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Grateful for today
Date Posted: Jan 13 2012 at 12:03pm

Addendum to my earlier post today.....the part about the mastectomy decision:

Already mentioned about one's individual situation.......same info.....different decisions.......

Would like to share:    I am 67 and single.
Would I have made a different decision if I were in my 20's or 30's or married/had a partner.......
..........don't know.
Do know others (67/single and all others) and with same info could choose lumpectomy/radiation
and that would be the very best decision for them.

With caring and positive thoughts to all,

Grateful for today..............Judy
    


Posted By: Wade
Date Posted: Jan 16 2012 at 3:33pm
Hi Lee,

I've been going through my binder and found an article you may be interested in.

The first is from ONCOLOGY, volume 25, #9 (August 2011, I think) "The Changing Field of Locoregional Treatment for Breast Cancer". I found it on www.cancernetwork.com. There are several articles referenced at the end of this article as well.

Good luck with your decision - and your treatment!

All the best,
Wade

ps - I forgot to put in the title of the article in the original post...  


-------------
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED


Posted By: Lee21
Date Posted: Jan 16 2012 at 9:50pm
I met with my medical oncologist for the first time and decided to go with the neoadjuvant route (DD AC-T) to start in two weeks to the day. I hope I will be able to tolerate the drugs.  I still have my sentinel node biopsy to do this thursday.  I guess it is out of order because I had originally planned surgery with SLNB but at this late date we decided to go through with the node biopsy part.

The only thing that I found a little disconcerting is that no imaging will be done until the end of therapy unless by physical exam they find the tumor is growing.  However, since the tumor is not palpable waiting for the tumor to be physically detectably growing before intervention is a little unnerving to me.  But that is the standard of care at my cancer center. So, unless I want to move to SF, I guess I will have to go with the flow.

Wade, thank you for the reference.


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Grateful for today
Date Posted: Jan 17 2012 at 2:53pm
Lee,

Thank you for letting us know your decision and the result of the U of M medical oncology visit.
Can almost hear the sigh of relief with your treatment decision made.
Glad that you can put that behind you now.

Before I started my chemo, I keep repeating what the nurse who worked with my oncologist said:
(re: chemo) All side effects are possibilities not probabilities.   
From the forums, you have probably seen those who practically sailed thru chemo and those who
just needed to adjust their post chemo medication plan to help the experience.
It's a little early.....but will start the positive hopes and thoughts for a chemo course with the
minimal side effects or none.   I had DD AC-T and was very fortunate....... I came up with a new
word.....pre-queasy and took the PRN meds as needed........did not have any nausea/vomiting
and did not have pre-nausea!

With positive and caring thoughts for your procedure on Thursday,

Grateful for today..............Judy

-----------------------

Wade,
     That reference you posted yesterday is terrific........so much info and so many references.
                                                                                                                    Judy


Posted By: Grateful for today
Date Posted: Jan 18 2012 at 9:24pm
Lee,

Sending lots of caring thoughts to you for Thursday's sentinel node biopsy.

Grateful for today.............Judy

p.s. You mentioned on another forum that "After my SLNB I will call the social work department to see if they will help." Good plan. Here's hoping they will have some resources/help with the cost of wig.


Posted By: Lee21
Date Posted: Jan 25 2012 at 11:19am
Hi everyone,
Just want to update what's been going on.
I had my SLNB last Thursday, 2 nodes, including a sentinel node, were removed and they were negative.
I had my first wig appointment yesterday and ordered one.  I signed up for the LGFB workshop.
I am starting chem on 1/30. Meantime I am trying to catch up on all the chemo tips and great questions that abound on this forum.

BTW, at my cancer center they only do fixation and H&E of the lymph nodes, no IHC or molecular markers to look for isolated tumor cells. Did anyone else have a different experience?

This is what I have been able to find out about lymph node staging (I am not sure what the IHC is looking for in terms of markers):

pN0 - no regional LN mets histologically, no additional examination for isolated tumor cells
pN0(i-) no regional LN mets histologically, negative IHC
pNO(i+) no regional LN mets histologically, positive IHC, no IHC cluster greater than 0.2 mm
pN0(mol-) no regional LN mets histologically, negative molecular findings (RT-PCR)
pN0(mol+) no regional LN mets histologically, positive molecular findings (RT-PCR)


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Lee21
Date Posted: Jan 25 2012 at 11:20am
One more thing, I am not going to get a port unless the infusion nurses have difficulties with my veins.  That's how to do things here.  I wasn't really given a choice.
Is this a local thing?  Were you given a choice for port or IV?


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: cheeks
Date Posted: Jan 25 2012 at 12:36pm
Originally posted by Lee21 Lee21 wrote:

One more thing, I am not going to get a port unless the infusion nurses have difficulties with my veins.  That's how to do things here.  I wasn't really given a choice.
Is this a local thing?  Were you given a choice for port or IV?

Lee, 

Perhaps that is a local thing?- not sure. My port was put in at the same time as my mastectomy by the same surgeon although i know it is not always done that way. I think ports are highly suggested to help save the veins. I know my oncologist and her nurse said they do not use the veins unless really necessary for some reason. My chemo started each week when on Taxol with about 4 smaller bags of premeds (benedryl, something for my stomach such as Tagamet (sp), a steroid)... then the bigger IV bag was started. In addition to the blood work done before they would administer the chemo. That's a lot of fluids to go through the arm plus the scar tissue that can develop with repeated blood work etc. So, I wasn't given too much choice either but the opposite of what you were given. 


Blair


-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: 123Donna
Date Posted: Jan 25 2012 at 12:37pm
Lee,

This is just my personal experience.  The first time I only had 4 treatments so they never even talked about a port.  After the 3rd infusion, I had leakage from the premeds causing burns to my vein and skin.  The last infusion they had to use my arm as there just wasn't any good veins in the hand anymore.

With my recurrence, we knew I'd have many infusions (some twice a week) so a port was ordered.  After having it, I can say it makes the infusion so much easier.  My onc said there is some discussion about having a port for women needing only 4 treatments.  I think the jury is still out on this and probably a personal preference by center and onc/patient.

Good luck and I hope you have no problems with your infusions.  If you experience any pain, let the chemo nurses know right away.

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: janet c.
Date Posted: Jan 25 2012 at 2:19pm
Lee,
I only had 4 treatments but I have veins that have always been hard to find when I had blood taken so my medical oncologist said that I had to get the port. She said that you have to have at least 3 or 4 good veins to get it without the port.
Janet

-------------
dx 12/08 @47yrs.old TNBC stage 2a grade 3, 2.1cm. partial mastectomy sentinal node negative BRACA negative Cytocan/Taxatere x4 radiation 36 or 38rounds


Posted By: BamaRachel
Date Posted: Jan 25 2012 at 9:51pm
Personally I'd insist on the port.  You only have one hand/arm to work with.  If you're getting either Adriamycin or Epirubin, that is very hard on your veins, and, as Donna pointed out above, can cause many problems if it leaks out of your veins. 

-------------
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.


Posted By: SagePatientAdvocates
Date Posted: Jan 25 2012 at 9:59pm
Dear Lee,

I agree with those above and would request a port...and I understand it is not being presented to you as choice...I would try to enlist the oncologist’s help or get a UM patient advocate involved.

good luck!!!!!

all the best,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Grateful for today
Date Posted: Jan 26 2012 at 12:50am
Hi Lee,

EDIT later on 1/26/12:
Lee, please disregard my post below of earlier today.
I had forgotten that you already had the SLNB.
I apologize for any confusion I may have caused.
My below thoughts were from the perspective of someone without any surgical
procedure prior to chemo. Your situation is different.
You are correct that there are precautions to consider on an arm that has had a lymph
node procedure.

****NOTE: All below thoughts from perspective/situation of chemo prior to SLNB/SLND****
                   Having had a SLNB prior to chemo is a different situation.
                                                  ....................Judy              

(original post)                                        
Sharing some of my thoughts.
When I had chemo (DD ACT....total 8 IV insertions), a port was not offered as an option.
Find it hard to believe now that I did not ask the pros and cons of ports back then.
Think I was glad to avoid a procedure and just wanted to start the chemo.
Fortunately, I have good veins and my veins held out.
One thing my oncologist did recommend: for the IV nurse to try to use the arm that
would have surgery to save the veins in the non-surgery arm. (Although a few times
I did end up with the IV placement on the future surgical arm side)
The IV nurses said for most MD's it was OK to alternate arms for IV infusions.
(edit later on 1/26/12:
Please note "the arm that WOULD have surgery stated above".
I had no surgery prior to chemo and thus had option of 2 arms.
Thus, Lee, what I wrote above is not helpful for you to consider as you situation
with a SLNB arm is different from my situation of no surgical before chemo.)


From people I have spoken with and from what I have read:
It seems to me that many who have ports are glad they had them and did not have problems.
It seems to me that many who had IV infusions tolerated them and did not have problems.
On the other hand, some who had ports did have port problems. Some who had IV
   infusions did have infusion problems.
Again, if only one knew how one will respond to each of the choices!
I think different oncologist's experiences with ports or IV's may enter the situation.

After reading all the posts and your research, you might consider seeing what info the
U of M cancer line gives on ports or no ports for ACT chemo
From University of Michigan: A NCCN Comprehensive Cancer Center.
University of Michigan Cancer Center: Cancer Answer Line   Nurse
1-800-865-1125        M-F    8-5:30pm EST
www.cancer.med.umich.edu/about/cancer_answerline.shtml - www.cancer.med.umich.edu/about/cancer_answerline.shtml
Then, with your U of M cancer line info and the info you have researched, you can discuss
the port or not port matter with your oncologist.
As we all know, everyone's situation is different and needs the best individual plan made by
one and their physician.

Think the above point made above that one needed at least 3-4 good veins to do chemo
without a port is a good one.
Also, have seen reference that a port may not be a consideration if:
      -   there is a history of forming blood clots
      -   having a body size that will not allow for proper port placement or port access .
Again, reasons to discuss one's situation with one's physician.


The following is very general info. Was hoping to find something more comprehensive.
Disregard if too general and/or you are already aware.
This link gives some pros and cons of ports and IV's.
http://breastcancer.about.com/od/lifeduringtreatment/f/port_vs_iv.htm - http://breastcancer.about.com/od/lifeduringtreatment/f/port_vs_iv.htm    
This link is by a PhD who had IV infusions ( the infusions were for multiple sclerosis
but she gives tips for starting IV infusions in general)
http://ms.about.com/od/treatments/a/vein_prep.htm - http://ms.about.com/od/treatments/a/vein_prep.htm

With your great researching skills, you and your MD will make the best plan for you.

With caring and positive thoughts,

Grateful for today..............Judy





Posted By: SagePatientAdvocates
Date Posted: Jan 26 2012 at 1:25am
Hi Lee,

I have helped two women who had collapsed veins two months into chemo. It became a real problem for one of the women, especially, because she had low blood counts and they were afraid to do the port procedure due to her compromised ability to fight infection.

Most women experience considerable fatigue during chemo and I think a port installed pre-chemo is more easily tolerated by the patient.

good luck to you,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: krisa
Date Posted: Jan 26 2012 at 2:36am
Lee, i did not have a port, my surgeon didn't think I needed one. I had eight infusions, all but one in my arms. Drink lots of fluids before the infusion, plumps the veins up. My surgeon told me if finding a vein was a problem, i had the option to have a Picc line.


Posted By: Lee21
Date Posted: Jan 26 2012 at 6:59am
Thanks for all of your input.
One thing, I thought I read somewhere that one should avoid using the arm on the side that had the SLNB for any sort of manipulation, including blood pressure measurements , IV placements, etc. to avoid development of lymphedema.
Has anyone heard about this? If so, it seems like I would only have the veins on one side for chemo.
Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Charlene
Date Posted: Jan 26 2012 at 7:35am
I was also told to avoid any sort of manipulation on the side that I had surgery and removal of lymph nodes.  I had a port placed prior to starting chemo, even though I was only scheduled to have 4 infusions.  My oncologist said it would be easier on me and I think it was.
Charlene


-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED


Posted By: SagePatientAdvocates
Date Posted: Jan 26 2012 at 7:50am
Dear Lee,

Your understanding is my understanding regarding using the other arm.

It is still hard for me to believe that if you insist you cannot get the port. I have seen several cases where the port was installed, even the day before chemo but most physicians seem to prefer a couple of days before.

My daughter has terrible veins and she had the port. She found it extremely helpful but was also very happy when it came out. As with all of this the marvelous women here are sometimes not left with wonderful choices but at the end of the day hopefully the chemo will do its thing and that is the most important thing.

again, good luck with your treatment.

warmly,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: 123Donna
Date Posted: Jan 26 2012 at 7:51am
Lee,< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

You are correct.  I was told to avoid any needle pricks/draws on the side I had surgery and removal of the lymph nodes as it can increase the chance of lymphedema.  Since you had SNB surgery, I'd be cautious about needle draws on on that side.  I was told to be cautious to any injury to that side, like a cut.

I've had chemo twice, once without a port and once with.  The first time I was so scared of the idea of getting a port and going through the procedure.  The port procedure was pretty quick and easy.  I had it about a week before I started chemo.  I was very sore the first few days, but by the time I had chemo, there was no soreness at all in the port area.  Now I don't even feel anything in that area.  (Yes, I still have mine.  Still superstitious about getting it removed.)  I know some women have their port placed the same day they start chemo.  My opinion - I wouldn't want to do both of them the same day.  

I met a woman at my infusion center and it was her first chemo day.  They couldn't get her veins to work after much trying and had to stop.  They told her she'd need to have a port as her veins just wouldn't work.  The next time I met her, she was getting chemo through her port.

I hope all this information helps.  Everyone's experience is unique to them, but I think it helps to know how others have fared so you know what to look out for.  

Donna



-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Grateful for today
Date Posted: Jan 26 2012 at 12:38pm

Note: What I posted earlier today has been edited. Please see above edit. Thank you.
           
                                           Judy


Posted By: BethP
Date Posted: Jan 26 2012 at 1:14pm
Lee,

From all the articles you have been posting on this site, I thought you had been a member for a long time. I didn't realize your diagnosis was so recent. I'll post this reply in case it may still be of use to you.

Two of the three surgeons I spoke with said a delay of 4-6 weeks between diagnosis and surgery or chemo (whichever you choose to do first) was fine. I would take the time you need to feel secure about your decision. If you are able to go out of state to a premier cancer center like MD Anderson, then by all means do it. 

I wouldn't beat yourself up about the mammogram. I had a mammogram every year for the past 9 years, and the breast mass didn't show up on it, though the lymph node did. Nobody, including me, has ever been able to feel my breast lump because it is near the chest wall. 

If you do get a second opinion, I suggest asking about the issue of removing the nipple. The surgeons I met with suggested that nipple involvement was one reason to have a mastectomy. 

Best wishes to you. You seem to have done a lot of research, and I am sure you will make a good decision.

Beth


-------------
Dx November 21, 2011: IDC, not staged; Gr. 2 nodes, largest 2.6 cm; Gr. 3 breast 1.2 cm; neo-adjuvant TAC; lump. + 16 nodes PCR


Posted By: Lee21
Date Posted: Jan 26 2012 at 1:34pm
BethP,

Because the time between Dx and Rx (12/9/11 to 1/30/12) is almost 2 months, I have had a lot of time to do research. Part of the reason for the time lapse is the Xmas holidays and my getting a second opinion at UCSF which turned out to take a lot longer to schedule than initially anticipated.

You are right, can't look back and think shoulda, coulda, woulda....must go forward.

I got my echocardiogram for pre-adriamycin and all set (I hope) for Chemo Monday.

Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Lee21
Date Posted: Jan 26 2012 at 2:14pm
The nurse practitioner told me last week that the only complication they had at the cancer center was with a port (I don't know how far that goes back and what the circumstances were).  I emailed my oncologist today and got an emphatic "no" to my query re: port.  I'll see her on Monday and ask for her reasons.  

-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: debB
Date Posted: Jan 26 2012 at 3:19pm
Hi Lee,

I would say that the 'no port' is a U of M thing. I had my chemo in Illinois, but when I had my surgery at U of M they indicated that they don't do ports for the short term chemos.

I had opted to have my first infusion before the port surgery to get things moving since my tumor was growing rapidly. On my first infusion, I reacted to the Adriamycin (arm started turning flame red moving proximally up and up the arm)and they ended up stopping the infusion and putting in the PIC line. That was a pain because my job is very active and I was having to go in every day for them to change the dressing since I was making it bleed.

As a result of my reaction, I now have 3 inch section of that vein that is dark and very hard to the touch. I have had blood draws just above that section but no one will touch it distal of there! It might not change their mind, but good to go armed with info!

Deb

-------------
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial


Posted By: Wade
Date Posted: Jan 26 2012 at 7:36pm
Hi Lee,

Kerri got a port.

One of the reasons cited by her team was to more rapidly dilute the Adriamycin, as it can be hard on the veins (as someone mentioned earlier).

As far as time, Kerri was scheduled for AC biweekly 4X, then Taxol biweekly 4X.  Also, she was told her port could be used immediately. Kerri didn't use hers immediately because she had already set a date in her mind.

We were also given the same warnings about the lymphedema possibility limiting the arm choice. 

Good luck with chemotherapy. May you have nothing but smooth sailing with it!

Best regards,
Wade


-------------
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED


Posted By: lisadi1963
Date Posted: Jan 26 2012 at 8:02pm

Hi Everyone.

I was diagnosed on 12/15/11 with IDC, 2.5 tumor.  I had my first surgeon visit a couple of weeks after the diagnosis and she suggested lumpectomy first, then chemo. I had my second opinion at KU Cancer Center in Kansas City. The surgeon and oncologist there said chemo first, then lumpectomy.  I decided that was the best option for me.  I had my first treatmentof 12 on  1/20/12 of taxol without a port.  Everything has gone good so far, just a little tired.  I have my port placed tomorrow and then go for my 2nd round.  I'm hoping everything goes the same as last week.  No issues. 
 
The nurses at the cancer center say that there are many people who do chemo without a port with no problem, I just don't have the greatest veins.  They had to try two times with my first treatment because the first one they blew a vein.  Both of my arms have bruises where they stuck the IV.. I look like a drug addictWink
 
Lee goodluck with your treatment!!
 
Hugs to all!  This is a great forum.


Posted By: cheeks
Date Posted: Jan 27 2012 at 9:54am
Lee, 

Good idea to keep letting them know what you want. 

 I posted several days ago that my mastectomy and port were done at the same time (opposite sides) at my request - didn't want any more procedures. It sure made the chemo and the blood work at the oncologist office much easier right through the port. My chemo nurse was very thorough in cleaning all of the outside skin area surrounding the port before doing anything. No other doctors or facilities access my port which should reduce the likelihood of any type of infection if this happens to be your doctors concern. 

 I have been told by all my doctors and the people at the place where i bought my sleeve to wear for flights, atmosphere changes etc. (to help avoid lymphedema) to always avoid blood pressures, lifting more than 10 pounds, blood draws etc. on the left side - leaving me only the right side, right arm etc. for those purposes. I also have veins that are deep and difficult to find and would rather have them available for the regular blood work done to check my glucose and cholesterol levels etc.

My mother is currently going through chemo for ovarian cancer - she has a "newer" type of port than mine which can be used for the chemo and dyes for the scans she will have to have prior to surgery.


Blair


-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: Lee21
Date Posted: Jan 27 2012 at 11:11am
I am conflicted: pros and cons for IV vs port. I am seeing my oncologist on Monday so I will try to pin her down on why she is so adamant about no port. Above all I don't want delays or setbacks. 
Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: *Nancy
Date Posted: Jan 27 2012 at 11:54am
I had a port placed on the right side when I got my left breast lumpectomy in April 2010. I never liked it. It always felt like it was pressing on my collar bone. I only had 4 chemo treatments, and it worked like a charm, I barely felt the stick when they accessed it. But no one else could ever use it. Whenever I'd need any other blood tests for any reason (like if my PCP checked my liver enzymes or my A1c), the lab technicians said they couldn't use it. I finally had it taken out in Dec 2010. I honestly do not know if I could have just had regular IV access during my chemo. My breast surgeon recommended getting the port so highly, that I just went along with it at the time.

~ Nancy ~


-------------
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17


Posted By: cheeks
Date Posted: Jan 27 2012 at 12:16pm
Lee, 

I understand, I experienced delays everywhere - from the time i found the lump all the way up until surgery (5 months) - even just before my surgery i got a respiratory infection and then my surgeon had a death in his family. I think you could have it done at anytime without much of a delay but i don't know for sure. The best of luck with your decision. 

Blair


-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: Grateful for today
Date Posted: Jan 29 2012 at 4:31pm
Lee,

Sending lots of caring and positive thoughts to you for your 1st chemo tomorrow.


Grateful for today..............Judy


Posted By: Lee21
Date Posted: Jan 29 2012 at 4:40pm
Judy
Thank you for your kind thoughts and wishes. I have to admit, I am feeling quite nervous, probably because I am imaging every possible side effect to happen.
I've never been sick for more than a day or two in the past, so this cancer thing is knocking me sideways.
It's winter here in Michigan, snowing all day -- I got a little bit of the sniffles and 2 canker sores came out of nowhere (I think it might have something to do with the teeth cleaning I got on Monday. Hopefully that won't derail Chemo Monday.
Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Wade
Date Posted: Jan 29 2012 at 4:55pm
Good luck with your chemotherapy tomorrow, Lee. We hope you sail through with no side effects. We'll be thinking about you.

Best regards,
Wade & Kerri


-------------
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED


Posted By: christina1961
Date Posted: Jan 29 2012 at 4:58pm
Lee,
I hope all goes well tomorrow!  I was really scared also but didn't have any problems!  I drag my laptop with me each time now - and my sister has gone with me which has really helped me. 
 
Christina


-------------
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.


Posted By: Grateful for today
Date Posted: Jan 29 2012 at 5:34pm
Lee,

When it comes to the 1st chemo, I have never heard of any one not being nervous.
So, even though, you are an exceptional person.....since you are human and since you are to have
your 1st chemo, there is nervousness.   
Know you keep on hearing it, but it is true, after the 1st chemo, things do get better
on one level.

Maybe you have things in the past which helped when you were nervous.
After my diagnosis, I tried the usual things....but also had to find new things to calm
myself down.
For some reason, humming or singing the song: Kum ba yah   helped. ( I had not heard nor
sung that song for years).
       Kum ba yah, my Lord, kum ba yah!
       Kum ba yah, my Lord, kum ba yah!
       Kum ba yah, my Lord, kum ba yah!
       O Lord, kum ba yah!
              Someone’s singing, Lord, kum ba yah!
              Someone’s singing, Lord, kum ba yah!
              Someone’s singing, Lord, kum ba yah!
              O Lord, kum ba yah!
      Then instead of "singing", I would use "healing"   "calming"   
                  "healthy"     "relaxing"    etc.
     There might be another slow beat rhythm song that you know that might be helpful.
I did not use a rocking chair at home during my treatment time.
Since I finished treatment, some one told me rocking in a rocking chair slowly MAY stimulate
   the parasympathetic (calming) nervous system. Thought that made sense.
   ( I plan to try that sometime in the future when needed.)
Think the IV ativan with my pre-chemo meds helped a lot.

You will figure out tonight what helps you feel better.

With caring, calming and positive thoughts,

Grateful for today.............Judy



Posted By: Lee21
Date Posted: Jan 31 2012 at 10:46am
It's day 1 after my first infusion.  I would say the infusion went reasonably well, took I think about 3 hours.  I was very groggy from the pre-med cocktail : I had requested Ativan, may have gone overboard with that.  The IV went in smoothly -- they said I have decent veins (at least for now).  They made sure that the IV was running well before they shot in the 3 syringes of Adria.  I didn't feel anything.  Then came the cytoxan infusion (I was more or less zoned out).
The only complaint I have was to have a roommate who liked her TV (I couldn't block out the noise even with earbuds).  But after a while it didn't make a differnce.
I had a (too) big lunch after I went home felt even groggier and took a nap.  By the time I woke up I was feeling nauseated and couldn't face dinner or even finish apple juice. I took a compazine and went to sleep.
Feel a little better this morning and soon have to go in for my Neulasta shot since the mail-in scheduling got messed up.  Still feeling nauseous after the Dex and Emend so I took a prophylatic compazine.
Any suggestions on how to combat this grogginess-nauseous cycle?


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: SagePatientAdvocates
Date Posted: Jan 31 2012 at 11:35am
Dear Lee-

I assume (always dangerous to do) that you are taking Emend exactly the way Merck suggests..

http://www.merck.com/product/usa/pi_circulars/e/emend/emend_ppi.pdf - http://www.merck.com/product/usa/pi_circulars/e/emend/emend_ppi.pdf

It is extremely important to not take it once you are nauseated.

There should be a palliative care unit at UM. They are the experts at nausea medicine and they may have some ideas about different meds if you are having problems. Please do not confuse this symptom management part of palliative care with hospice. From my experience a good palliative care team can really help someone going through chemo...they also have expertise on GI issues and pain management. 

Also, from my experience the oncologists do not like to refer patients to the palliative care units. They prefer to have total control. At USC, as an example, you can self-refer yourself. Don’t know how it works at UM.

loud neighbor-BOSE headset + watching movies on your laptop won’t disturb anyone..

all the best,

Steve




-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Lee21
Date Posted: Jan 31 2012 at 11:48am
Steve, thank you for all of the tips. I took Dex and Emend with breakfast and afterwards felt a few twinges so I took the compazine.  I think it is question of how to fine tune all the meds.
Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: SagePatientAdvocates
Date Posted: Jan 31 2012 at 12:05pm
Lee, I agree about the fine-tuning..my daughter and other women I know had to do that..

also, their needs changed based on the length of treatment...my daughter found that the longer she was on chemo the side effects were progressively worse, especially fatigue which plagued her for months, even after her treatment was over. Also she had severe bone and joint pain on Taxol and other women have not had either experience. I hope you don’t.

And for her, and others, chemobrain is real and disconcerting, many years after treatment.

The good news is that she is 7+ years out NED and in excellent physical shape. She exercises a lot, does Yoga 3-4 times a week and eats a healthy diet. I think it all helps with her general well being.

Wishing you all the best,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: cheeks
Date Posted: Jan 31 2012 at 12:23pm
Lee, 

I am glad your first treatment went well and your vein held out.  I always took the Emend first thing in the morning the day of chemo - and then each morning as directed. I was very fortunate and did not experience any nausea but did have a few other side effects from the Taxol. 

I'm also pleased you were able to eventually rest  - for some reason i felt very agitated during Taxol - (maybe it crosses the blood-brain barrier) and was not able to rest or sleep much even at home.

My very best to you for continued good treatment. 

Blair

p.s. try to drink lots of water to flush that stuff past the bladder.



 


-------------
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.


Posted By: krisa
Date Posted: Jan 31 2012 at 12:27pm
My first infusion and the following week was the most challenging. After that, I knew the drill and was prepared. Congratulations on getting through your chemo infusion.


Posted By: Grateful for today
Date Posted: Jan 31 2012 at 12:33pm
Lee,

Thank you letting us know how yesterday's 1st chemo went. Great to hear the IV went in
smoothly and infusion went reasonably well.    

Sounds like you said....just some fine tuning or tweaking of the meds.
Sounds like you have a very tweakable situation which you are doing a great job of doing.

You mentioned you are going in for your neulasta shot.
While there, you are probably considering:
        Asking them about their opinion on taking Claritin with the Neulasta.
               Some who have bone pain after Neulasta, say Claritin (OTC med) helps.
               Wonder if some providers may say see if you get any side effects with Neulasta first.
               ( I had no side effects with my 1st Neulasta......no bone at all.)
        Ask your provider to review your DEX/Emend and compazine plan.
               The oncology center pharmacy told me to always take the Dex and Emend unless
                        my MD told me otherwise. Pharmacy thought MD would want Dex and Emend
                        continued unless there was a adverse reaction.
               Sounds like you did the best thing by taking the compazine last nite AND this morning.
                      It's those twinges or vague sensations that one wants to be on top of...... at least
                             until one is more familiar on how one reacts and responds to the meds.
               You might want to ask your provider if you should take some compazine (? frequency)
                      for the next few days since you had some breakthru nausea yesterday.
                     (compazine mechanism of action is different than Emend)       
                     ( With Emend and compazine, diet to avoid constipation. Stool softeners if needed.)

        Some other things to consider the next few days, eat lighter. If help needed for fluids,
                   consider frequent sips of fluids, consider ice cubes, ginger ale, ginger tea.    I usually
                   do not drink soda but did drink ginger ale when needed during chemo to up the
                   fluid intake.   (Ice cubes: ? if/when mouth tissue sensitive. so let ice cubes melt
                   a little before putting in mouth). Figure out/find the best fluids for you while on
                   chemo.
       For the next chemo, you can review the dose of Ativan given with your MD. Maybe a
                 decreased dose would still be effective but result in less grogginess. Again,
                 like you said just needs some fine tuning.

With caring and positive thoughts,

Grateful for today.......Judy.
           


Posted By: Lee21
Date Posted: Jan 31 2012 at 1:51pm
Hi Judy
I asked about the Claritin yesterday -- the nurse practitioner says they recommend for the pain associated with Taxol.  Not sure why.
I was prescribed and instructed to take Emend and Dex for the first 2 and 3 days post chemo respectively and I have compazine for as needed for nausea (up to 3 times a day).
I told the oncology nurse yesterday about my grogginess and they review my pre-meds before the next round.
Thank your thoughts,
Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Lee21
Date Posted: Feb 03 2012 at 11:22am
Last few days, since the start of chemo, I have developed ringing in my right ear -- the first 2 days it disappeared after my shower but not today and it is constant.
I had the AC, compazine (first 3 days) and Pepcid (every day) -- does anyone know which drug might be causing this annoyance and how to alleviate the annoyance?
Thanks, Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: 123Donna
Date Posted: Feb 03 2012 at 11:27am
Lee,< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

I've had ringing in the ears since Cytoxin/Taxotere.  I'm hearing it right now, but usually can block it out.  After treatment ended, I went to an ENT specialist and had my hearing tested.  I learned that Cyctoxin can cause hearing damage.  When they did the hearing test, I had hearing loss in the upper ranges of hearing.  Mostly I have problems when there is lots of background noise I'll have difficulty hearing the person speaking to me or when I'm watching TV I'll need it turned up a little higher.  The ENT doctor just said yes, cytoxin and some cancer drugs can cause permanent hearing damage.  There is nothing you can do to reverse it.  At least I know the cause and it's something I just have to live with.  Sigh....

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Grateful for today
Date Posted: Feb 03 2012 at 11:53pm
Hi Lee,

Although ringing in the ears can be a side effect of chemo, there might be a slight chance that
the ear ringing is related to nasal/ear congestion from the sniffles you mentioned you had before
chemo. The cause might declare itself if the ringing disappears again with showers and eventually
goes away.    If the ear ringing continues and your oncologist is not sure if it's from the chemo,
you might consider seeing your primary MD/ENT to rule out other causes.    


With caring and positive thoughts,

Grateful for today................Judyi


Posted By: Lee21
Date Posted: Feb 04 2012 at 9:31am
Thank you -- pretty much what the oncology nurse practitioner said.  Could be from the meds.. but can't can't do without the meds so I will see how it goes.

-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: turtle
Date Posted: Feb 07 2012 at 11:01am
Hi Lee,

You have responded to my questions about scans, and I had a new question akin to delay of treatment because of obtaining a second opinion. 

When I found my lump, I would have told you it was about the size of a dime, maybe a little smaller. This corresponds almost exactly to the size estimate on ultrasound of 1.5 cm. However, once the tumor was biopsied, it got bigger of course (swelling due to tissue edema, bleeding, etc). Since the breast MRI was done on this 'larger' tumor, I wasn't too concerned that it would come back with a larger size estimate, because that was surely a reflection of the swelling that had taken place. However I'm not sure how this swelling will affect the size on the path report on the surgical specimen, (I'm assuming there will be some tissue shrinkage during specimen preparation...particularly if these are paraffin sections, but would this 'counteract' the swelling that had surely taken place?)

Thus, question 1: given the inherent inaccuracies of US measurements, but caveats to perhaps more 'accurate' measurements, what to believe about our tumor size, and thus stage, of our tumor?

Second (more directly speaking to your issue of taking time to get a second opinion): Does the biopsy procedure disseminate any of the tumor cells from the primary tumor into the vasculature, thus making the timing of this procedure relative to beginning treatment important?

I'd appreciate thoughts/feedback from the forum.


-------------
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery


Posted By: Lee21
Date Posted: Feb 07 2012 at 1:20pm
Hi Turtle,
These are good questions and I have wondered about them myself. 

I developed a hematoma from the biopsy and then I started feeling some nonspecific nodularity (what I called ropiness, like a rope) along the biopsy track.  Previously I had not been able to palpate any mass in the area of the tumor.  Since then neither could any of the doctors/nurse practitioners that have tried to size the tumor, due mainly to my dense breasts and the fact that both of my breasts feel the same on examination.  My US pre-biopsy sized it at 1.7cm and my MRI a month later had it at 3cm.  When I asked about whether the tissue remodelling around the biopsy site could affect the size, I was given some noncommittal answer that it could. When I dug into the literature (I think those articles are posted under the tumor size entry), the consensus is that MRI is the most accurate and even if MRI overestimates (relative to the pathological specimen) the non-tumor part was still pathological (lymphovascular invasion, inflammation etc). US sizing is operator dependent and they would have to get the plane just right in order to get the maximum diameter whereas MRI is a 3D technology and not operator dependent. I know when the radiologist was doing my initial US, she was mainly trying to find the cause of my presenting symptom (breast discharge) and not so much on sizing the tumor.  In other words, if you had an breast MRI and they sized it differently, that is probably the size closer to the surgical specimen.

Regarding the size of the pathological specimen, it will be processed in a standard fashion. Fixation and permeabilization will alter the specimen size for sure. Then it gets embedded in paraffin. They have to cut the paraffin block and depending on how the specimen sits in the block, that could be at an angle too.  But sizing of the surgical specimen is the gold standard and all studies on outcome would be based on this.  So I would not get too caught up with all the details - your stage would be based on the final size of the surgical specimen.

It has crossed my mind about whether the biopsy disseminated some tumor cells.  That's a hard question to address and I haven't seen anything in the literature.  But not all tumor cells that gain access to the bloodstream or lymphatic system will seed -- after all they are now in a hostile environment and hopefully the immune cells in those new sites will come to our rescue.  However if no intervention is taken, then presumably, over time, the disseminated tumor cells will take. There is a debate on whether micromets found in lymph nodes is actionable in terms of prognosis and treatment.

In your situation you already have the primary tumor removed so that should buy you a little time to look for a second opinion. It's really critical to get the chemo right -- having said that, unfortunately there are variations of the standard of care for TNBC and based on non-TNBC, high risk patients in the adjuvant setting. Your oncologist at Duke directs the clinical trials program so I would definitely ask her about options.

Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Grateful for today
Date Posted: Feb 12 2012 at 8:24pm
Hi Lee,

Sending caring and positive thoughts to you for your next chemo.
Think you said the oncology nurse already knows that your pre-chemo meds need to be reviewed
........so with a some adjusting of pre and post chemo meds, sounds like there is a very good chance
of a better experience with the 2nd chemo.

You have been amazing in your posting since chemo. Thank you for using some of your time and
energy to do this.   Please know if any time during your treatment, you need to put your time and
energy elsewhere, we will more than understand.
Do take care of yourself. This is the time for you being the 1st priority.

Grateful for today............Judy


Posted By: Lee21
Date Posted: Feb 12 2012 at 8:48pm
Thank you Judy for your kind thoughts.  My day will start tomorrow at 7am and I will remember to talk with the nurse about decreasing the ativan dose.  I hope that I will be able to rebound the second go around as well as the first (barring the queasiness and bowel issues the first week).
I'm a bit concerned that I am not noticing any effect of chemo upon self-exam -- I've read elsewhere in studies where they say a response should be evident after 2 cycles (if you're gonna respond, you'll see it then).  Another study mentioned marked response noted on day 16 after cycle 1 (conventional dosing).
Just worried.
Best, Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Wade
Date Posted: Feb 13 2012 at 4:09pm
Hi Lee,

To confirm your reading, Kerri's MO noticed a definite shrinkage after the second dose of AC. I don't have the appointment calendar with me but I believe it would have been around 23 days after her first dose. As I recall, we would usually see her a few days before each treatment. 

I will try to verify this when I get home.

We're hoping you have a great response.

Best regards,
Wade




-------------
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED


Posted By: Wade
Date Posted: Feb 13 2012 at 9:07pm
Hi Lee,

I've found my notes on this. These measurements were all taken externally, with calipers. At least one of these measurements was taken by the PA, not Dr. Dul, so there is some extra variability in these measurements.

June 10, first visit with Dr. Dul, 5.5 x 6cm
June 17, first dose A/C
June 28, 4 x 2.5cm
July 1, second dose A/C
July 15, third dose A/C
July 21, 1.5 X 1cm
July 29, fourth dose A/C 

My notes get a little flaky at this point. At one of the subsequent meetings, The PA was feeling for the lump, and went back to Kerri's chart - I asked her if she was making sure she was checking the proper breast - she said yes, and I assured her she was. She couldn't find the lump. Great news for Kerri, but Dr. Dul said this response was atypical, one of the best she had seen. 

I hope your response is as good!

Wade


-------------
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED


Posted By: Lee21
Date Posted: Feb 13 2012 at 9:21pm
Thank you Wade for the information- you are taking such good care of Kerri and so thoughtful and diligent. pCR is pretty rare - I will keep my fingers crossed.

-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Lee21
Date Posted: Feb 15 2012 at 5:47pm
My hair is falling out and as soon as my husband gets home from work I'll have him shave my head.  Are there tips for how to shave and head care afterwards? I have a wig and some coverings, more wondering about head wash etc.
Thanks, Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: 123Donna
Date Posted: Feb 15 2012 at 6:07pm
Hi Lee,

I did the same thing when my hair started falling out.  We had a set of Wahl trimmers that my sons' used to cut/shave their head.  My husband used the #3 setting (3/8") so I was left with a little stubble.  Most of it eventually fell out over the next few days.  I used a gentle baby shampoo during treatment until it grew back. 

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: kirby
Date Posted: Feb 16 2012 at 1:46am
shave against the growth pattern of the hair for the closest shave and eveness. That means down in the nape and crown you may need to go several directions. Keep the entire blade head flat against the head. Do not use just the tip of the blade. Grasp the ear by the middle of the "flap" gentling tugging down on it to shave the hairline evenly around the ear.
 
I just use the blade on the clipper which gives the closest clip. If your hair is thick and dark you will still appear to have hair. It will look good wearing beret's and such as the hair seems to fall out more on the top first. If you have lighter colored and/or thinner hair you may want to use a # 2 or 3 guard.
 
Try to work quickly [ or take rests ] if you are not using a professional clipper or one with much strength. The head of the clipper will get warm and your head will be sensitive.
 
Hope this helps. [ I am a hairdresser]


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: Grateful for today
Date Posted: Feb 16 2012 at 9:00pm
Hi Lee,

Hope things are better this week after your 2nd chemo and any pre/post chemo med adjustments
are helping.   
Thank you for taking the time and energy to post during chemo.

If you have already seen, just disregard the following.
There is link that has info on free head scarves/tying scarves and other:
http://forum.tnbcfoundation.org/scarfs-hats-with-hair-attached_topic9503.html - http://forum.tnbcfoundation.org/scarfs-hats-with-hair-attached_topic9503.html

With caring and positive thoughts,

Grateful for today.........Judy


Posted By: *Nancy
Date Posted: Feb 16 2012 at 9:11pm
After I lost my hair, I just used a mild baby shampoo for my scalp. I honestly ended up liking not having to do my hair every day. My only "complaint" was that my head would get cold, especially at night when trying to sleep. I would not leave my head coverings on in bed, but I sure wrapped up almost in a little cocoon to stay warm.

-------------
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17


Posted By: Lee21
Date Posted: Feb 17 2012 at 9:58am
Thank you all for responding. My husband shaved my hair down to a quarter of an inch so it is almost the GI Jane look.  Still getting used to it, more the cold than appearance and figuring out what is comfortable for a head cover.  Even wearing a wool hat on top of a fleece cap on top of a mesh cap didn't ward off the midwest winter cold when I went for a walk yesterday.

-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: 123Donna
Date Posted: Feb 17 2012 at 10:03am
Lee,

It's funny that I didn't realize how much our hair keeps us warm.  During the winter my head would be so cold, I wore fleece caps around the house and even to bed.  Otherwise, I couldn't get warm.  Hope you're feeling good.  What day was it when your hair started falling out?  Mine was on day 15.

Donna




-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Lee21
Date Posted: Feb 17 2012 at 10:10am
Donna,
I noticed a few more hairs around the sink and when showering on day 15 and on day 16 when I tugged gently a bunch came out. So that's when I went for the GI Jane look. So far I am tolerating the chemo except for the not so great appetite. My first set of lab tests were OK (LFTs were normal, slightly low on the hemoglobin and WBC in the 5Ks) -- hope they won't deteriorate too much with additional cycles.
Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Lee21
Date Posted: Feb 20 2012 at 10:54am
Everyday I find something different about my body.  Last cycle, I noticed that the skin around my abdomen was very dry and flaky and there were discolorations that looked like stretch marks that I didn't know I have.  Yesterday, I started noticing my left arm (inner side) has started flaking and have the same discolorations.

Is this par for the course?


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm



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