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JRight2525 View Drop Down
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    Posted: Oct 26 2015 at 3:15pm
My wife, age 55 very fit and athletic, No other health issues, was diagnosed with TNBC. She had a double mastectomy with reconstruction 2 weeks ago. The tumor was 1.8cm, grade 3. Negative lymph nodes, Negative Margins in the breast tissue surrounding the tumor,post surgery.  The NCCN recommends Chemo to anyone with a tumor larger than 1cm . Looking to advise her on the best path. Anyone choose not to have Chemo in a similar set of circumstances? Meeting with Oncologist tomorrow. Did anyone find MammaPrint a useful diagnostic measurement to make decisions. Thanks in advance.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2015 at 5:10pm
Unfortunately surgery, chemo and radiation are the only tools we have to fight this beast.  Currently we don't have targeted therapy like other breast cancers (ER+, HER2+) making chemo the best option to mop up any stray cells that might have escaped the tumor.  

Wishing you and your wife the best on your upcoming meeting with the onc tomorrow.  It's a good idea to bring your list of questions written down.  Some people will even record the meeting to make sure they "hear" everything the onc tells them.  My husband would tell me things I never remembered my onc saying.  So an extra pair of ears is essential.  This is such a trying and emotional time and difficult to process everything we hear.

Here are some good links to information on TNBC:








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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2015 at 5:44pm
Hello JRight: I can speak as a husband - my wife has her second bout with cancer, her first, in her other breast was Stage 2B IDC/lobular (NOT Triple Negative)

This time, she has TNBC Stage 3B-C...w/ 3-4 lymph nodes and surgery Nov2--- I think this is a hard decision for your wife and you because no lymph node involvement defaults to the size of tumor...l since my wife has nodes involved, she has already completed chemo (carbo-gem)

I do think 1-2 oncologist's opinions are warranted, and unlike us, I don't think there is the urgency (2-4 weeks) to make that decision. My wife has a metaplastic tumor which is aggressive thru the lymph nodes (confirmed TNBC) and it goes thru the bloodstream, so we had to make decisions sooner.

I believe she will have a good outcome, with no lymph node involvement, we all hope so, G.

I'm sure some will correct me, but WITHOUT lymph node cancer, the benefit from chemo is +/-5% improvement in OS (Overall Survival measured in years), I could be wrong, so this is certainly a question for the oncologist(s)

 


Edited by gordon15 - Oct 26 2015 at 5:50pm
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2015 at 6:10pm
I don't want to scare anyone but if you look at my signature, I had a small tumor, clear margins, 0/5 nodes.  It was an upper, outer tumor.  No lymphatic invasion.  I even had chemo after my bilateral mastectomy.  Still, I had a recurrence 13 months later.  Not all tumors drain to the sentinel nodes.  I'm an example of that as they believe the cells escaped prior to surgery but were too small to be picked up on the MRI.

Please look at the NCCN Guidelines for TNBC, page 30, says anything 1.0 CM or larger chemotherapy is needed.



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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote JRight2525 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2015 at 7:37am
Thanks for your post, I formation with context is helpful
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JRight2525 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2015 at 7:40am
Thanks for your posts, they are helpful, hope you are doing well now. Did you use mammaprint as a diagnostic tool? What chemo treatments did you receive the first and second time. Thanks
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2015 at 7:57am
When I was diagnosed, Mammaprint was not offered.  My understanding from previous discussions on this forum is that most of the time (96%) Mammaprint results come back as high risk for TNBC.  The first dx in 2009, I had Cytoxin and Taxotere.  With the recurrence I entered a clinical trial for Iniparib, Carboplatin and Gemzar.  This month is 5 years from the recurrence diagnosis and hopefully still in remission (NED).



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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2015 at 2:10pm
Thank you for all the info and the link.


Edited by gordon15 - Oct 27 2015 at 2:13pm
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2015 at 10:15pm
Four women in my family had tumors of 1cm or less with clear sentinel nodes, all were Stage I, we were at 4 different hospitals (three of them in the top 10 in the U.S. for cancer treatment), and all received recommendations to do chemo.  We all did chemo, and even with chemo, one person had a recurrence.  My oncologist told me that with chemo I'd have a 12% chance of recurrence and without, about a 23% chance.  TNBC is really aggressive and can metastasize even after a Stage I diagnosis.  The only way to kill those cells that get into the body is chemo.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2015 at 11:00pm
I know it is human nature to want an easier route; although with triple negative breast cancer I'm not sure there is one.   I work at an oncologist clinic and I see ladies with ER+ PR+ receptors.  Most times, especially if they are early stage, their treatment can be less chemo.  The early stage Her2+ breast cancer is usually treated more aggressively, since this receptor is an aggressive cancer.  They take Herceptin, a target drug, to suppress the trigger for their cancer. 
Ladies with triple negative cancer always get chemo.  We have no target drug to suppress anything, so we need the chemo to mop up cells that may have escaped through the vascular system to distant parts of the body.  I am a nine year survivor and, as difficult as the journey was in the first few years.... I would really be afraid to gamble and not do chemo.
As Donna said, this is not to scare anyone, it is to put things into some order for the mind to ponder on.  Keep posting and let us know your decisions.  We are here to help and support.
 
Love and God Bless,
Lillie


Edited by Lillie - Oct 27 2015 at 11:01pm
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JRight2525 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2015 at 11:02am
Update , met with Oncologist. My wife , Bi Lateral w/reconstruction 1.6cm Grade 3, Lymph nodes, Clear Margins around surrounding tissue. Oncologist stated, Chemo is recommended with all TNBC. " She is probably 70% cancer free post surgery, 30% not. The Chemo is only effective 33% of the time, effectively raising her theoretical percentages to 80%. She is weighing the decision, is Chemo worth it whit a 66% failure rate? We are going to University of Michigan Hosp next Wed. to get a 2nd Oncology consult. We would like to hear if these % are indicative of your experience? Also would Like to hear from TNBC survivors that did not have Chemo. Thank You in advance for your time and support. It is greatly appreciated !!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2015 at 12:07pm
Your oncologist is correct that chemo is almost always recommended for TNBC, especially Stage 1 or higher.  My first dx the tumor was 1.5 cm, clear nodes, clear margins, etc.  My onc told me with chemo the chance of it coming back was 12%.  Without chemo it was 25%.  TNBC is aggressive and is more likely to travel through the blood or vascular system.  Chemo is used to try and mop up any stray cells that may have escaped.

It's good that you are going for a second opinion.  If there was one thing I'd recommend to anyone diagnosed is to get a 2nd or even a 3rd opinion if possible.  It will help making a better treatment decision and also give you some peace of mind that you are heading in the right direction.  This cancer stuff is so scary and overwhelming at times.

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2015 at 10:54am
re: Cabozantinib therapy     http://tinyurl.com/odvuyvn

November 09, 2015

New Therapy for Triple-negative Breast Cancer Shows Promise in

Recent laboratory findings provide novel insight into potential new therapeutic approaches for triple-negative breast cancer, a particularly difficult-to-treat and aggressive form of the disease. In a recent study published in Clinical Cancer Research (2015; doi:10.1158/1078-0432.CCR-15-0187), scientists demonstrated in preclinical experiments that the drug cabozantinib inhibits growth of several triple-negative breast cancer subtypes.

"Triple-negative breast cancer accounts for 15% to 20% of all breast cancer cases, yet is responsible for a disproportionate number of cancer-related deaths," said corresponding author Carrie Graveel, PhD, research assistant professor at the Van Andel Research Institute (VARI) in Grand Rapids, Michigan.

"This higher mortality rate is due to a lack of targeted therapies, the disease's aggressive nature, and the diverse cell population that comprises the tumor. It is crucial we develop better diagnostic tests and an array of targeted therapies to better classify cancer subtypes and effectively treat the disease on a patient-by-patient basis."

Triple-negative breast cancer is resistant to many current therapies because it lacks the three major receptors, or proteins that receive and transmit messages to and from the cell, that are present in other forms of the disease. These proteins—estrogen receptors, progesterone receptors, and human epidermal growth factor receptor 2 (HER2)—are targets for many common breast cancer treatments. Their absence in triple-negative disease eliminates many of the treatment options available to patients with other types of breast cancer, underscoring the importance of developing new, more targeted therapies.

"In this study, we used two complementary preclinical models to analyze drug responses of the tumor in the context of interactions with its microenvironment, which is known to contribute to malignancy," said co-senior author Bonnie Sloane, PhD, of Wayne State University in Detroit, Michigan. "These types of analyses may identify novel pathways for therapeutic intervention."

One target of cabozantinib is the MET protein, which drives many of the processes that make cancer aggressive and challenging to treat, including invasion of other tissues, proliferation, and survival of cancer cells. MET is overexpressed in 20% to 30% of all breast cancer cases, and is typically associated with a poor outcome. In a 2009 paper, Graveel and VARI's George Vande Woude, PhD, demonstrated that MET is expressed in triple-negative breast cancer and is a potential therapeutic target.

In addition, cabozantinib, discovered and developed by Exelixis Inc, is the subject of ongoing clinical trials in advanced kidney and liver cancers, and is approved to treat metastatic medullary thyroid cancer.

Preclinical experiments demonstrated that cabozantinib impedes triple-negative breast cancer progression and spread by inhibiting the MET protein. Graveel's and Sloane's laboratories used unique cancer models that included both breast cancer cells and the connective tissue cells that often support cancer growth. Their findings not only provide evidence for cabozantinib's therapeutic potential for triple-negative breast cancer, but also imply that MET plays a crucial role in growth and invasion by triple-negative cancer cells.

Graveel and Sloane plan to continue exploring the potential of MET inhibitors as therapies for triple-negative breast cancer in addition to conducting further analysis on their models to define characteristics that may be used as diagnostic tools.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SharieZ Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2015 at 6:32pm
Hello - I was recently diagnosed with stage 2a TNBC and had a bi-lateral mastectomy in early October.  I am 57, had two tumors; one 3.8 cm in one breast and 1.3 cm in the other.  The tumors were high grade, however there was no lymph node involvement and margins were clean. I was given a stat of 60% no recurrence, and 40% recurrence of which I had a 50% chance that the chemo would help when looking at a 10 year survival rate.  My husband and I have both been challenged with the same thing that you and your wife have been dealing with, in questioning whether the benefits of chemo are worth the risks. My husband has been researching data for the past couple of weeks and there are really no great studies that he has found that supports some of the statistics represented above. I also called some of the reputable cancer resources in the last couple of days and they could not provide me with the data I was looking for.  One of the institutes did quote a study that was done with 1,000 TNBC patients and said that 23% had better results with chemo than without, however he could not tell me the name of the study so I could look it up. Best of luck on making the tough decision on "chemo or not".  Hopefully your second opinion will help sort some of this out for both of you!  I need to make a decision by next week as my chemo is scheduled to start, so I appreciated reading your posts as that told me other people were questioning the same thing.  Smile 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2015 at 6:53pm
Hi Sharie. My wife also is in this quagmire. She has Stage 3B, Grade 3 TNBC/metaplastic/squamous. She had masectomy, AFTER carboplatin/Gemzar chemo, which resulted in a pCR (pathological Complete Response) in her 4 abnormal lymph nodes, but only a reduction of about 60% in her lump, from 2.5cm to 1.3cm. I read online that TNBC forms a resistance to chemo in the tumor, but the lymph node response is actually considered more indicative of future OS (overall survival) or DFS (disease-free survival)

She still has to talk to her oncologist who has a tumor board meeting tomorrow to discuss her case, but the oncologist is "leaning towards more chemo, that being 12 Taxol, weekly."

He said he will not give her Carbo-Gem again.

I read online that if the primary tumor does not get a 100% complete response to chemo, it's because the infiltration avenues are blocked by resistance from the cancer, at some point, thus my wife did not get 100% on her tumor. The lymph nodes were considered to be a pCR.

So, she will be meeting with the radiation-oncologist to decide on if radiation is appropriate and wondering if Taxol (12) would do any good(?) since there's no way to measure it's success.

Donna- I didn't understand your previous question about why do neoadjuvant chemo at all or something - maybe you could simplify cuz I'm all ears. Thanks


Edited by gordon15 - Nov 11 2015 at 6:56pm
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2015 at 3:46am
Hi JRight.  I don't understand your math, but for me what it boiled down to was this.  Highly reliable statistical studies showed that for women with my profile (TNBC, stage 1, my age, and some other factors), chemo saves lives.  Specifically, for my profile, the studies showed that if I did not get the chemo there was a 23% chance I'd have a recurrence that would be incurable.  And if I did get chemo the chance of a recurrence would drop to 12%.  So even fearing chemo, it was an easy decision for me to sign on.  I really wanted that extra 11% chance of a cure! Chemo was not easy, but it was actually nowhere near as bad as I feared.  I worked full time except for infusion days, I kept up with a demanding work schedule, I socialized plenty.  I had to push a little harder and cut back a bit on activities, but I continued to live very happily throughout chemo.  I know quite a number of women who had this same experience.  Once chemo ended, I was so glad I had to worry about a 12% rather than 23% chance of the cancer returning.  I do not feel chemo has had any permanent impact on my health or well being.  Of course I'll never know for sure, but chemo may have saved my life. 
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tink Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2015 at 11:08am
I really appreciate the posts! After 7 years of no indication of cancer I found a lump on the same side that was previously diagnosed. I have been told to do both Chemo and Rads because a "recurrence" scares them more than the original diagnosis. I tested for neg in lymph nodes. The first time I did a dbl mastectomy and reconstruction. I also did Taxotere and Cytoxen for 3 months. I have backed out of chemo because of not being able to find data to support. I have been through 2 more surgeries and got clear margins the 2nd time. I have changed my diet dramatically and do not eat sugar and only limited amounts of fruit. I also quit all sodas and drink alkaline ph balanced water. It has been a very difficult decision due to having chemo previously and I am terrified to the andriamycin because of heart disease being prominent in my family. I did an echo cardiogram. I have been recommended to have A/C and rads. I feel very alone and I think my choice scares a lot of people who love me. Therefore I am, once again, second guessing myself. I would love to hear from anyone who has experience with any of this.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2015 at 3:47pm
I'm so sorry for all you are going thru Tink.  And I'm sorry that your Dr.'s are not providing you with copies of the studies that pertain to your particular situation.  They ARE out there.  When I changed to a Teaching, NCI rated facility during my care I started receiving copies of any and all studies that my (wonderful) doctors would reference when laying out the treatment options.  Yours should be doing the same!  I unfortunately cannot lay my hands on all of that material from 6 years ago - I don't know where I "safely filed" it.  I do remember that statistically a recurrence proved more difficult to beat - was statistically more likely to be ultimately fatal.  That was discussed with my husband and I as part of the reasoning my team had for me doing the maximum treatment with my diagnosis.  You say, "I have backed out of chemo because of not being able to find data to support".  I highly suggest you get a second opinion, and request that your 2nd opinion Dr. provide you with any and all studies that he bases his recommendations on. 
I read on here somewhere again this week someone asking that long term survivors that did not do chemo to please comment.  I've been coming here regularly for 6 1/2 years and I've seen this same request made over and over and over again.  I have yet to see a long term survivor that did not do chemo respond.  That is most certainly not a scientific piece of news, but I - and I think others that have been here a long time - continue to encourage those facing this diagnosis to do the chemo if they are physically able to because of this fact, as well as all the actual fact based studies.  We don't see it, we spend time here for years and we don't see the survivors that skipped chemo. 

It's certainly healthy for you to change your diet, to feed your body in a more healthy way.  Unfortunately we see extremely strong, healthy women coming here all the time that already have a very healthy lifestyle, yet they're coming here having been diagnosed with TNBC.  There is no evidence that TNBC is caused by bad lifestyle choices - we aren't here because we're fat or drunks or sedentary.  I was a very healthy, active 45 year old at diagnosis.  I've continued to eat fairly healthy, but I've not made any "dramatically different' lifestyle choices - I still occasionally eat sweets, red meat, drink a cocktail - and I'm still NED 6 years later.  I guess my point is, I hate to see women forgo their best shot at long term survival because they are afraid of chemo, or convince themselves that changing their diet and exercise is going to keep the cancer away.

++ full disclosure:  my father had mesothelioma and fought it for 18 months with extreme doses of the worst chemo and massive amounts of radiation.  When he passed away my mother made the definitive statement:  I will NEVER have any chemo or radiation - no matter what.  20 years later she followed thru with that statement and died from breast cancer mets to her brain and bones.  That was one year before my own diagnosis.   So I do have personal reasons for encouraging women to DO the treatment, if long term survival is important to you - and if you are healthy enough to withstand it.  It saves lives.  It saved mine. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kellly Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2015 at 6:54pm
Hi tink,
So sorry you are in this mess once again.
I cant type very well cause of my arm. Anyway...my thoughts
- A from Ac can be done in weekly low dose and the same total dose is not as bad for your heart as giving it 3 weekly, ask your onc. And what about carboplatin for chemo?
What about a mammaprint to determine if you have a high risk of reacurrence...but since this is the second time... Thats probably says a lot
Ask your onc about what percentage chemo would add to survival. They have a program they use.
The big question is, if it does return will you regret not to have done this chemo? I hope you can find an answer to that question.
I was 6 years ned till i was dx stage 4. Tn is so creepy. Sorry you have to go rhrough this again, it is very scary and lonely. Take care
DX '08,34yr, TN-IBC, gr3, 4 FEC, 3 Taxotere, biMST ->3/9 nodes+, 23rad's, BRCA-, bi DIEP '09. '12 son born!
Dx2 feb'14 mets subcl. & mediast. lymph nodes.CHEK2-. Olaparib, Carboplatin. Now: Nivolumab
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2015 at 7:34pm
My wife starts Taxol tomorrow, 12 - weekly, she says it's a lower dose. The oncologist didn't even give her time to think about it, he barely has given her time to heal from single masectomy,  the Carbo/Gem chemo worked on the lymph nodes but only about 50% on tumor. Don't know about radiation at this point. thanks. G.
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