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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2011 at 11:17pm
Hi Sandra,

Realized that something very important was left out of what I previously posted......you are probably
very much aware of how important fluids are.
Fluids, fluids, fluids......especially day of chemo and few days afterwards....to get chemo out of the body.
Another thought re: nutrition. If you have access to an oncology nutritionist, a visit would most likely be
helpful. Protein is important when on chemo.....to help healthy cells repair.
Exercise: as some one else noted previously, 30 minutes of daily exercise would be great. As usual,
everyone is different. For some people, just to walk an extra 5 minutes is all they can do when on chemo.
Listen to your body while on chemo. In my experience, most people were not able to exercise 30 minutes
daily.......other's experience may have been different. When able, ANY exercise (walking is fine) is better
then none.

Hope your visit with the medical oncologist goes (or went) very well.

With caring and positive thoughts,

Grateful for today...........Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2011 at 3:07am
Hi Judy,
thanks so much for that. I drink a lot of water anyway, at least 2 litres a day, so keeping up my fluids shouldn't be too hard. And I really hope I can keep up with the exercise - I have 2 Siberian Huskies that need their daily 5km walk! Maybe 5km a day during treatment might be pushing it... but maybe I can get out for short walks. It's coming into summer here in Melbourne, Australia :-)

My appointment is next Tuesday. And I have been feeling in limbo. I have finished with the surgical side and am now waiting for the chemo side of things, so at the moment I'm just 'waiting'. I am armed with info, thanks to this site, to take to the appointment with the MO next week. You guys are so insightful and helpful. I thank you.

Sandra
x
Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes.
Lumpectomy & ALND 10/2011
FEC-D 11/11 - 03/12
Radiation finished 05/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Allmandy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2011 at 5:51pm
Hi Sandra,
I was diagnosed with triple neg after my mastectomy on 19th Sept. 2011. Upto that point I had been told it was not breast cancer but a neuro-endocrine tumour! So everything changed when they finally got the 'alien' under the microscope. As I tried to explain to my nine year old son - it was like they had a blue piece of jigsaw when they took the core biopsy and the surgeon said it was part of the sky but when they finished the jigsaw they realised it was a blue cat!!! 6.5 cm with 27 nodes rmoved - 2 enlarged but none malignant.
 
Now they know what it is I am to have 6 cycles of FEC and then 3 weks of radiotherapy. I had my first one on the 25th just after a week's holiday in Spain topping up my vitamin D. The oncolgist is so much easier to understand than the surgeon (who was great with a scapel but not with the subtleties of the English language being Danish!) After being sick on the bus going home and two days with what felt like morning sickness I have felt fine and went back to school last week where it was great to get on with the day job. My Mum has bought me a new swimming costume and a swim boob as an early birthday present and I can't wait to use them but I've just been hit with a very heavy period and so am feeling very sorry for myself - not the cancer, not the chemo just the time of the month blues - typical!!
 
My children (daughter 12 and son 9) have been great but my husband is finding it very hard. His parents both died of cancer when he was a teenager and he can't work out whether to overplay the attention or underplay the attention. He's very disturbed by it all and that makes it hard for all of us.
I think its been like having a baby in reverse. First the operation and dealing with the scar is like having a newborn- you panic about everything whilst the breast nurse smiles and says its all fine. Then you have the morning sickness and you have to deal wih the food cravings that come with trying to deal with it! The way i see it is I taught through two pregnancies so I can do this too! I've started to wear silly hats to school before my hair falls out so the kids get used to it before I have to. I couldn't cope with a wig it would be to hot and I can imagine the uproar if I removed it to scratch my head!
 
Its just so great to find a site for people like me. One's where we just get on with it rather than get bogged down with te enormity of the occurance.Smile
Mandy 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2011 at 8:28pm
Hi Mandy,
thanks for sharing your story. I like the part about it being like a baby in reverse... because I loved being pregnant!! OK, so maybe this won't be as 'lovely', but I am hoping I will cope well with the side effects. I guess I just have to wait and see. Appointment with the oncologist tomorrow, so I am nervous but at the same time happy to be getting on with the next stage of my treatment. 

How are your kids coping? My 7yo is worried about my hair falling out... even though we keep trying to make light of it and make up funny stories about my 2yo pulling my wig off while we're out shopping etc. I think the anticipation of it happening is going to be worse than the actual event. I loved the comment about taking your wig off to scratch your head, couldn't stop laughing!

My husband seems to have adopted the same attitude as yours... his dad died of bowel cancer 4 years ago. At the moment he is going through the 'it will be OK' stage. Men, well the men I know at least, seem to have trouble dealing with the emotional side of a cancer diagnosis.\

Sandra
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Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes.
Lumpectomy & ALND 10/2011
FEC-D 11/11 - 03/12
Radiation finished 05/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2011 at 8:28pm
So sorry you now belong to this website, but you will be very happy to hear from all the loving people that belong.  There are so many caring people who are going through the same thing and will give you so much support.  If you don't mind me asking but what chemo will you be receiving?  I agree 100% not to do any further research on this type of cancer.  That was a huge mistake of mine.  This website gives me hope seeing woman who are in remission from tnbc.  We are strong women who all pull together through this; hang in there and don't be afraid to ask anything!  Best of luck to all
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2011 at 8:33pm
Since my hair is gone, I've decided to buy all the fun holiday hats, santa, reindeer, snowman and the kids love it.  It makes them happy and not so worried about me.  Although my kids are alittle older, they still enjoy seeing there mommy happy, styling and profiling, lol.
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2011 at 9:27pm

One thing I have learnt from all the reading I have done, is that are no guarantees with any sub type of breast cancer. They're all bad, tri neg or not. No-one wants to be dealing with cancer! So all that info about how 'bad' tri neg is, is not helpful. I am not even going to think about it anymore. And honestly, of all the doctors I have seen, they have said the grade 3 aspect of my cancer is a concern, but the tri neg part isn't. None of us know what the future holds, so all we can do is enjoy each day. 

I'm not sure what chemo I'll be getting, find out tomorrow. I am anxious about it. I just want to get started on it! 

Love the funny hats ideas... I am so getting a Santa hat this year. I haven't bought a wig yet, not even sure I will. It is coming into summer here in Melbourne, Australia and our summers are roasting. I think I'll stick to caps and scarves for now. Maybe a wig later. I'm not particularly attached to my hair... I change it so often anyway. It's hair. It will grow back Smile
But, having said that, the thought of losing eyelashes freaks me out a little... all the dust and junk will get into my eyes! Have any of you used false lashes?
Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes.
Lumpectomy & ALND 10/2011
FEC-D 11/11 - 03/12
Radiation finished 05/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2011 at 6:48am
a lot of woman like the wigs, I'm not one those women.  I still feel pretty in my wraps and caps.  Just remember to wear makeup it will make you feel so much better. except of course after your treatment days you may not feel like it.  Did you get a port? You are not allowed to wear false eyelashes because of the adhesion, during chemo your skin is very sensitive to everything. You don't want to pull your eyelid off with the eyelash, lol.  btw im 38, your questions and concerns are exactly the questions I had.  sometimes I may not sound like I have any sense when I respond because I have so much to say and cant't type fast enough, lol.  Also, I didn't lose my eyebrows or eyelashes until the very end of my 5th treatment.  If you wear eyeliner on the top lid and bottom people won't be able to tell that you've lost them. At least that what friends have said to me.  Strangers can't even believe that this is my 2nd round of chemo, that was my goal. Still being young I want to look healthy and like I still care about myself otherwise the cancer is winning!  Don't ever back down even on your worse day.  Usually after the 4th day after chemo I feel 80%.  Just keep in touch with this website through your journey.  Help and support will always be here!  Best of luck!
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2011 at 2:36pm
Donna you are so full of great information!! Thank you so much, I read a lot of what you post to other people and learn by it....keep the knowledge coming!!
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2011 at 9:46pm
Hi Sandra,

Sending lots of positive and caring thoughts to you for your Tuesday appointment.
Hope you get all the information and support you need from your physician.

Although it sounds counterintuitive, most feel better after chemo starts.
The waiting and unknowing is hard.

I like to remember a statement from Dr. Jerome Groopman, MD.
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."
Here's to hope for you that all is and will be well for you.

With caring thoughts and lots of good hopes,

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


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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2011 at 2:22am
Thanks ladies. 
I just got back from the appointment and I think it went well. I was really happy to hear the lump was taken out with clear margins, there was no lymphovascular invasion and it the wounds have healed beautifully.

The MO recommended FEC x 3 followed by Taxol x 3. 
So I am off to do some reading about this combination and decide if I should go for a second opinion - but obviously I can't wait too long, it has been 4 weeks since surgery. MO said she likes to wait 6 weeks before starting chemotherapy.

Great quote Judy Smile
Dx 09/2011 TNBC BRCA 1 & 2 -
T2 2.5cm N1 3/29 nodes.
Lumpectomy & ALND 10/2011
FEC-D 11/11 - 03/12
Radiation finished 05/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2011 at 6:50pm
Hi Sandra,

What great good and positive news in your Nov 8 posting.

I happened to see your post on TNBC Talks Forum on: 5-fluorouracil (5-FU).
Wasn't sure if the members who have been posting on this forum topic would see your post on 5-FU.
Thought they would also like to share the additional good news of your CT and bone scan being all clear.

Copied from your post on 5 Fluorouracil (5-FU) today 4;42:
"Hi folks,
I start my chemotherapy on November 25th. My MO recommended 3 cycles of FEC100 followed by 3 cycles of Taxotere - at 3 week intervals. She also said I'll be given 4 different kinds of anti nausea meds?! I thought that sounded like a lot, but from what I'm hearing here, I may just need it.
Good news is that my CT scan and bone scan came back all clear. And my kidney and liver function tests were excellent, yay. That was such a relief. Vit D levels were very low, though, so am on supplements for that. I need to ask the MO, at my next appointment, what other supplements I can take.
Thanks for all your good advice to date. It has been very helpful. "


I know when I go to post I sometimes have to stop and think which of the various forums (that I had
previously posted on) do I now want to post on.
I appreciate that everyone on the forum is flexible where one posts.
Hope it is OK with you that I referred to your other posting on this forum........just wanted the members on this forum to know the good news about your CT and bone scan.



Have you seen the post by dmwolf of jan 12, 2011     5:40
It's about whether the taxane is given first or last.
You might want to read the entire post / all the replies (it's on the Welome New Members forum).
           (There's 8 pages).
You might want to ask your MD's opinion of the retrospective study........
note: study looked at taxol ( paclitaxel) (a taxane) and you said you will be on
             taxotere ( another taxane)
Post by dmwolf of jan 12, 2011     5:40            
Newbies: you might want to discuss this study with your doctor as you work together to come up with a treatment plan.
Chemotherapy Sequence Affects Early Breast Cancer Outcomes
Elsevier Global Medical News. 2011 Jan 7, B Jancin
SAN ANTONIO (EGMN) — The sequence in which paclitaxel and anthracyclines are given for treatment of early breast cancer makes a big difference in long-term outcomes.

That's the conclusion reached in what is believed to be the largest-ever retrospective study of the clinical impact of the sequencing of taxanes and anthracyclines. The study involved 3,010 early breast cancer patients who were treated during 1994-2009 and entered into the prospective online database at the University of Texas M.D. Anderson Cancer Center, Houston.

The clear winner was paclitaxel, followed by anthracycline-based therapy with 5-fluorouracil, doxorubicin (Adriamycin), and cyclophosphamide or 5-fluorouracil, epirubicin, and cyclophosphamide, Dr. Ricardo H. Alvarez reported at the San Antonio Breast Cancer Symposium.

Starting with paclitaxel rather than an anthracycline-first regimen led to better long-term results in the settings of adjuvant chemotherapy and primary systemic (or neoadjuvant) therapy.

The adjuvant chemotherapy analysis included 1,596 women, three-quarters of whom received paclitaxel followed by anthracyclines. The 5-year relapse-free survival rate with this regimen was 88.8%, compared with 79.5% when anthracyclines were followed by paclitaxel. The 10-year relapse-free survival rates were 81.8% and 73.5%, respectively.

Five-year overall survival was 93.1% with paclitaxel followed by anthracyclines, compared with 83.2% for the reverse. The 10-year overall survival rates were 83.9% and 65.6%, respectively.

In a multivariate analysis that was stratified for potential confounders, including age, clinical stage, hormone receptor status, tumor grade, and era of diagnosis, the anthracyclines-first sequence was associated with a 67% increased risk of relapse (P less than .0001) and a 2.5-fold greater risk of mortality (P = .001), according to Dr. Alvarez, a medical oncologist at M.D. Anderson.

Among 1,414 patients who underwent neoadjuvant therapy, the 5-year relapse-free survival rate was 79.0% with the paclitaxel-first regimen vs. 61.2% with the anthracyclines-first regimen. Ten-year relapse-free survival occurred in 61.7% and 50.5%, respectively, of these patients.

Overall survival was 84.2% and 66.2% at 5 and 10 years, respectively, in patients who received paclitaxel followed by anthracyclines, compared with 71.3% and 53.4% in those who got anthracyclines first.

In a multivariate analysis, the anthracyclines-followed-by-paclitaxel sequence of neoadjuvant chemotherapy was associated with an adjusted 49% higher risk of relapse (P = .01) and a nonsignificant 28% increase in risk of all-cause mortality (P = .17), compared with the paclitaxel-first strategy.

The mechanism that accounts for the increased efficacy of taxane-first regimens for treatment of breast cancer is unclear, according to Dr. Alvarez.

With caring and positive thoughts,

Grateful for today........Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2011 at 7:02pm
Thanks Judy - being new to the forums, I have to stop and think about what I write and where I write it! Of course I don't mind you sharing the post... if I minded anyone reading it, I wouldn't be posting in the first place Smile

I will email my MO and ask her to look at the study, it is interesting. It seems like quite a big difference in outcomes. If it is a matter of switching the order of drugs, I can't see why she would have a problem with it. I will definitely follow it up.

I was very happy with the clear scans. Such a scary time waiting for results. But it's done now and time to clean up any rogue cells. 

I've been referred for genetic testing. There is no family history of cancer in any side - just my cousin who was diagnosed 3 years ago at 37, with BC. But the doctors seem to think it is important I see a genetic counsellor and go from there. 

Thanks for all the info Judy, it has been really encouraging.
Sandra

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2011 at 12:47am
Hi Sandra,

Glad to hear you were referred for see a genetic counselor (check counselor is certified).
This year (according to post previously by Steve) the NCCN ( National Comprehensive Cancer Network
advised BCRA testing for TNBC patients if under 60 years of age. Once you receive all the information
about BCRA testing, you can decide about being tested.

The responses to the article " Chemotherapy Sequence Affects Early Breast Cancer Outcomes " as you
will see from the posts on the other forum are varied.    Some MDs are doing the taxol first.   Some MDs are continuing the taxol as last. Would have really preferred not to have given you information that may not have a black and white answer........however, thought it better to know about this article before you start chemo......so you can discuss it with your MD.    Some places do not changes protocols until there is a
prospective clinical study. The ACT vs T-AC was a retrospective study.

Believe some one posted about the following article but cannot find it right now.
Also, I still have trouble using the hyperlink on the forum......sometimes I get it to work and
other times it fails   (it's me and not the hyperlink).
So I need to print article and not use the hyperlink.
You may want to discuss this article with your MD.
REMEMBER: This is a RESEARCH article.    Not proven by a clinical study.
After the article was in Oncogene, 3/15/2010,   Taxanes (taxol and taxoterel protocols still being use.
Article:
Research May Provide Potential Target For New Therapies To Limit Metastasis Of Primary Breast Cancers
Main Category: Breast Cancer
Also Included In: Biology / Biochemistry
Article Date: 15 Mar 2010 - 2:00 PDT

Researchers at the University of Maryland Marlene and Stewart Greenebaum Cancer Center have discovered that "microtentacles," or extensions of the plasma membrane of breast cancer cells, appear to play a key role in how cancers spread to distant locations in the body. Targeting these microtentacles might prove to be a new way to prevent or slow the growth of these secondary cancers, the scientists say.

They report in an article to be published online March 15, 2010, in the journal Oncogene that a protein called "tau" promotes the formation of these microtentacles on breast tumor cells which break away from primary cancers and circulate in the bloodstream. While twisted remnants of tau protein have been seen in the brain tissue of patients with Alzheimer's disease, this is the first report that tau could play a role in tumor metastasis by changing the shape of cancer cells. These tau-induced microtentacles can help the cells reattach to the walls of small blood vessels to create new pockets of cancer.

"Our study demonstrates that tau promotes the creation of microtentacles in breast tumor cells. These microtentacles increase the ability of circulating breast tumor cells to reattach in the small capillaries of the lung, where they can survive until they can seed new cancers," says the senior author, Stuart S. Martin, Ph.D., a researcher at the University of Maryland Greenebaum Cancer Center and associate professor of physiology at the University of Maryland School of Medicine. Michael A. Matrone, Ph.D., is the study's lead author.

Healthy cells are programmed to die - a process called apoptosis - after they break off of epithelial layers that cover internal organs in the body. They also can be crushed if they are forced through small capillaries. However, cancer cells are able to survive for weeks, months and even years in the body. Once they are trapped in small blood vessels, the cells can squeeze through microscopic gaps in the vessels' lining and spread to organs such as the brain, lung and liver.

"We hope that through our research, we will be able to identify drugs that will target the growth of these microtentacles and help to stop the spread of the original cancer. Drugs that reduce tau expression may hold potential to inhibit tumor metastasis," Dr. Martin says.

He notes that metastatic cancers are the leading cause of death in people with cancer, but methods used to treat primary tumors have limited success in treating metastatic cancer. In breast cancer, metastases can develop years after primary tumors are first discovered.

Tau is present in a subset of chemotherapy-resistant breast cancers and is also associated with poor prognosis, but Dr. Martin adds, "While tau expression has been studied in breast cancers for contributing to chemotherapy resistance, the protein's role in tumor cells circulating in the bloodstream hasn't been investigated. And that's the focus of our research."

In this recent study, the University of Maryland researchers analyzed breast tumor cells from 102 patients and found that 52 percent had tau in their metastatic tumors and 26 percent (27 patients) showed a significant increase in tau as their cancer progressed. Twenty-two of these patients even had tau in metastatic tumors despite having none in their primary tumors.

Dr. Martin says more studies are needed to determine if tau is a clear predictor of metastasis. Given the complex nature of tumors, there most likely are other factors involved in causing cancers to spread, he says.

"Metastasis is a very major concern for people diagnosed with cancer, and the discovery of these microtentacles and the role that tau plays in their formation is a very exciting development that holds great promise for developing new drugs," says E. Albert Reece, M.D., Ph.D., M.B.A., acting president of the University of Maryland, Baltimore, and dean of the University of Maryland School of Medicine.

The University of Maryland, Baltimore, has filed patents on the microtentacle discoveries of Dr. Martin's lab group and is looking to partner with biopharmaceutical companies on new drug development. The researchers identified these cell extensions while they were studying the effects of two drugs that prevent cell division, or mitosis. Most chemotherapy drugs target cell division, aiming to slow or stop tumor growth.

Dr. Martin says his team found that a popular chemotherapy drug, taxol, actually causes cancer cell microtentacles to grow longer and allows tumor cells to reattach faster, which may have important treatment implications for breast cancer patients. Their studies are continuing.

"We think more research is needed into how chemotherapies that slow down cell division affect metastasis. The timing of giving these drugs can be particularly important. If you treat people with taxol before surgery to shrink the primary tumor, levels of circulating tumor cells go up 1,000 to 10,000 fold, potentially increasing metastasis," he adds.

The study being published in Oncogene was funded by grants from the National Cancer Institute, the USA Medical Research and Materiel Command, and the Flight Attendants Medical Research Institute.

Source:
Karen E. Warmkessel
University of Maryland Medical Center


One other thing you might discuss/clarify with your MD: dose dense chemotherapy.
Some chemotherapy is given every 2 weeks (dose dense) and some given every 3 weeks.
Sorry if I missed how frequently your chemo is being done.
Know you said FEC x3 and Taxotere x3.
Your oncologist can explain further about every 2 weeks versus every 3 weeks.

If I have given you to much information, apologies.
I found such an overload of information during treatment time. Yet I wanted to know as much
   as possible.
Please know my intent is to help and not overwhelm.

I love the black and white situations/choices.
Life is not always black and white.

With your chemo planned for Nov 25, you have time to prepare your body and mind for that part
of your treatment plan which is your "insurance" for healthy cells in you. Again, waiting is challenging!

With caring and positive thoughts,

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

                                                        
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2011 at 1:33am
Hi Judy,
thanks for the info and I think I am starting to get confused! I really appreciate and love all the information, but have to admit I do feel a little overwhelmed by it all. But please, by all means, keep it coming. I need to be informed about this disease. I've noticed that here in Australia there is a different approach re drugs and order of treatment. I asked the MO the other day what the advantages of neoadjuvant chemo was - because I had a lumpectomy and axillary clearance first. She said the consensus was to do surgery first because right now, my tumor was operable. She said if it is operable the consensus is to take it out. Why risk it growing? As she said, if we leave it there and find a particular chemo combination doesn't work, we potentially miss the opportunity to remove it. That did make sense to me. So I have to be confident and comfortable with the choices I have made thus far.

I did ask about dose dense, but she said it wasn't necessary. I might try and find some info about dose dense cycles on this particular combination and run it by her again. I am scheduled to do them every 3 weeks at this stage. 

I am all ready to start. Walked 7km's with my dogs today, did some gardening, went to the park with the kids, soaked up some sun... was a good way to spend the day and I'm feeling really well.

Thanks again for all your info and help, Judy.
Sandra
xo

I asked about dose dense, but again she didn't seem to think it was necessary? 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2011 at 2:23am
Hi Sandra,

You are doing everything A++++++.
You are so right about how important it is to be confident and comfortable with the choices you have made thus far.

Hopefully I try to give information that seems important to know.
Then, with similar clinical status and with the same information, different people can come to different decisions with each decision being the best one for that person.........sorry I did not express this in my
prior posts.

I did not realize you had already discussed every 2 week vs q 3 wk chemo with your MD.
If I had realized that, I would not have brought it up again.
Just wanted to be sure you had discussed it.
Again, every one is different and the best decision is the one you make with your MD.
(That very long and wordy article that I had included was RESEARCH info if you wanted to
share with your MD if your MD was wondering what SOME thinking is about the ORDER of
chemo meds.    Again, both order of meds (taxane first and taxane last) are being done at the
major cancer centers in the USA......so whatever you and your MD plan is best for you and backed
up by others.)

Please know that I did not intend to question any of your decisions.

So good to hear about all you do......such healthy activities.....walking your dogs, connecting with
nature in the garden, getting sunshine.....and most important having time with your kids in the park.

With continued positive thoughts,

Grateful for today.................Judy
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SandraB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2011 at 2:49am
Judy, I like the info you post. I think it is very important to stay educated about this disease. I am starting to get muddled, not by anything in particular, but just because there is so much information out there. I find it difficult to sift through it all and absorb it all.

It is definitely interesting to read about these studies and I will mention them to my MO, but at the same time, I also need to trust her judgement and believe she will give the best treatment for my situation. She is, after all, the one with all the clinical training! And I didn't perceive you to be questioning my decisions or treatment. I thought you were trying to be helpful and provide some guidance. You have been where I am set to go and I can only learn from yours and others experiences. 

I try to be healthy. Shame BC is no respecter of healthy choices and lifestyle. But such is life and I am confident I can get through this. 
Sandra
xo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Allmandy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2011 at 7:28am
I'm ready to start my second round of FEC this week and am feeling thoroughly sory for myself. The last two weeks have been great. I was back at school and getting on with the job like I'd never left. After initially being intrigued by my headgear the kids have been great and I actualy feel normal (whatever that is). Unfortunately I have developed another seroma which is dragging me down and I've been told they won't drain it because of the risk of infection and I can't swim because of the risk of infection and although all the hair is still on my head (maybe that not so cold cold cap actually worked!) my eyes are very itchy and I'm wondering if I'm losing my eyelashes first?
The other problem Ihave had the last two days is I just want to cry constantly and this comes on anytime anyone asks how I am but they keep doing it!!! I suppose its the underlying knowledge that despite the fact that I feel so well I will have to subject myself to that feeling rotten all over again on Wednesday afternoon but I providing that I pass the blood test - which seems harder than any mental examination I have ever put myself through as its completely unknown and no matter how much you take care of yourself you have no way of knowing if it is actually doing any good!
I suppose its being robbed of all personal autonomy that I am finding so hard. You are completely dependant on the recommendations of others and you have no certainty that they are getting it right as its all down to statistics and guesswork. Meanwhile life goes on as normal with highland dancing exams and football injuries and two kids fightring over the wii remote
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SandraB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2011 at 3:29pm
Are you doing 3 rounds of FEC100 then Taxotere too? I've heard about the cold caps... but the hospitals here don't seem to encourage their use, for some reason. Not to worry, 'hair' today, gone tomorrow - it will grow back :-) You can't swim? I guess that makes sense, public pools are a breeding ground for infections. Have you been able to keep up other forms of exercise?

I completely agree with the feeling so well and subjecting ourselves to this treatment. It still boggles my mind that something so small, a 2cm lump, could be so deadly as to require such drastic and toxic action. But that's the nature of the disease, isn't it?

And I too am struggling with that loss of autonomy. Our lives, literally, depend on the decisions and judgments of others. How to manage that when we are so used to being the director of our lives? It is definitely frightening to be so reliant on a group of people we barely know, but I have to take comfort in the knowledge that this is bread and butter for them. Although we have a less common variant of the disease, we're not re-inventing breast cancer. 

Ahhh, highland dancing. I remember watching my cousin practice when we were young. My dad was born in Glasgow, moved here to Australia with his family when he was 3yo. I've been there a few times, it's a beautiful place.


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Allmandy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2011 at 4:24pm
6 rounds of FEC then 3 weks of radiotherapy. I was originally going to have 4 rounds of something else with lots of steroids but pleaded insanity (I'm asthmatic and whenever they have put me on oral steriods I have felt like I was having a nervous breakdown!).
The first chemo nurse I saw tried everything to put me off the cold cap even down to suggesting I might getMETs in my scalp but when I asked her the likelihood of that she said she didn't know. My sister works in a path lab in the sunny south of England and she said her consultants had never heard of that one so I think its more to do with the time and effort involved. I have to wear itfor 30 minutes before and then during and 70 mins after. I didn't find it too cold but so far so good, the hair is still here so I'll give it another go this week.
My lump was 6.5 cm when they got it out but as I had such large boobs it remained safely hidden unless I lay down! I had been swimming every day since February when I was told my 4 months of constantly recurring chest infections were due to a depressed immune system and I set out to improve it. Ironic that I have never felt so fit. So as I am paying for the whole 5 star hotel gym experience I have forced myself to go to the land based option but I hate it and canonly keep myself on the trewadmill if the tv programme is worth watching! However the great outdoors is challenging in a Scottish winter so I better put my new swimming costume away and get thetrainers out again
!!
 
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