Need some help!!

twosenuf99 · 01-23-2012, 07:14 PM

Hi ladies
It's been forever since I posted but I do try to get on here and stalk the group everyday.. My thoughts are always with you all in this crazy journey of ours..

I am currently doing 5FU, Epirubicin, and, Cytoxin every 3 weeks. I have one left to go on February 13. I am also in the middle of reconstruction ie: getting expanded 120ccs in each "breast" weekly. By my calculations they will be filled to the max in about 3 weeks.

Originally the Onc told me I was Er-, PR- and Her2+.Then she said I am Er+ and PR+ along with Her2+ but the er and pr are so low she wasn't giving me the Tamoxifen.. Saw her today before my Chemo tx and she now says even though they are extremely low around 2. something she changed her mind and now will give me the Tamoxifen (even though she believes it won't help)with Herceptin when I am done chemo. She also wants to do 6 weeks daily rads. in 3 different places on my chest, subclavicle and underarm area.

My questions or concerns are like most others.. After reading some of the horror stories of Tamoxifen I am not sure what the benefits for me would be compared to the disadvantages.. I also am debating doing rads as after my mastectomy they could not find any disease. She is telling me it is protocol for stage 3c for as aggressive as it was to do it. I am also concerned with the side effects of rads compared to the benefits. I know if I do rads it can come back. If I do not do rads it can come back. She said there are no studies to give her any statistics on my particular cause since after the initial 16 weeks of chemo the 8 tumors and lymph node involvement was gone. Could not even find cancer cells to send to the study I was on.

I am not sure what to do as I feel whatever choice I make it may be a bad one. Please help me with your wisdom and experience..

Also on an easier note has anyone ever had the expanders filled 120ccs a week? My ps will not tell me what is normal. She said it is up to the individual.. Anyone ever expanded to the max (approx 840cc. ) The muscles are not bothering me half as much as the actual expanders digging into me are..

Sorry for the lengthy rant..

Tracy

chemteach · 01-23-2012, 09:09 PM

Hi Tracy. I'm going for my 5th expansion tomorrow. He only adds 75cc to each mound every week. I was a C cup before all this. I haven't worn a bra since August which I really like. I put a C cup bra on last week, and these "mounds" filled the bra nicely. 840cc seems like an awful lot to me, but maybe it's normal for some.
You are doing your research and will make an informed and educated decision regarding the tamoxifen and radiation. I have experience with neither. There are always "what ifs," but you mustn't second guess yourself. I am ER negative and slightly PR positive, so no tamoxifen or hormone inhibitors for me. It was chemo and Herceptin. I get that tomorrow too.
My thoughts are with you. You will make the right decisions.

Jackie07 · 01-24-2012, 03:53 AM

My tumor was only 5% ER positive and my oncologist put me on Tamoxifen. I've seen research abstracts talking about new trials for patients who are ER- to receive Tamoxifen.

Below is a recent abstract on the subject:

Int J Dev Biol. 2011;55(7-9):703-12.
Four decades of discovery in breast cancer research and treatment--an interview with V. Craig Jordan. Interview by Marc Poirot.

Jordan VC.
Source

INSERM UMR 1037, University of Toulouse III, Cancer Research Center of Toulouse, Institut Claudius Regaud, 20 rue du pont Saint Pierre, Toulouse Cedex, France.

Abstract

V. Craig Jordan is a pioneer in the molecular pharmacology and therapeutics of breast cancer. As a teenager, he wanted to develop drugs to treat cancer, but at the time in the 1960s, this was unfashionable. Nevertheless, he saw an opportunity and through his mentors, trained himself to re-invent a failed "morning-after pill" to become tamoxifen, the gold standard for the treatment and prevention of breast cancer. It is estimated that at least a million women worldwide are alive today because of the clinical application of Jordan's laboratory research. Throughout his career, he has always looked at "the good, the bad and the ugly" of tamoxifen. He was the first to raise concerns about the possibility of tamoxifen increasing endometrial cancer. He described selective estrogen receptor modulation (SERM) and he was the first to describe both the bone protective effects and the breast chemopreventive effects of raloxifene. Raloxifene did not increase endometrial cancer and is now used to prevent breast cancer and osteoporosis.The scientific strategy he introduced of using long term therapy for treatment and prevention caused him to study acquired drug resistance to SERMs. He made the paradoxical discovery that physiological estrogen can be used to treat and to prevent breast cancer once exhaustive anti-hormone resistance develops. His philosophy for his four decades of discovery has been to use the conversation between the laboratory and the clinic to improve women's health.

Jackie07 · 01-24-2012, 04:13 AM

J Cell Biochem. 2011 Mar;112(3):761-72. doi: 10.1002/jcb.23004.
Roscovitine, a selective CDK inhibitor, reduces the basal and estrogen-induced phosphorylation of ER-α in human ER-positive breast cancer cells.

Węsierska-Gądek J, Gritsch D, Zulehner N, Komina O, Maurer M.
Source

Cell Cycle Regulation Group, Institute of Cancer Research, Department of Medicine I, Comprehensive Cancer Center, Medical University of Vienna, Vienna, Austria. jozefa.gadek-wesierski@meduniwien.ac.at

Abstract

Roscovitine (ROSC), a selective cyclin-dependent kinase (CDK) inhibitor, arrests human estrogen receptor-α (ER-α) positive MCF-7 breast cancer cells in the G(2) phase of the cell cycle and concomitantly induces apoptosis via a p53-dependent pathway. The effect of ROSC is markedly diminished in MCF-7 cells maintained in the presence of estrogen-mimicking compounds. Therefore, we decided to examine whether ROSC has any effect on the functional status of the ER-α transcription factor. Exposure of MCF-7 cells to ROSC abolished the activating phosphorylation of CDK2 and CDK7 in a concentration and time-dependent manner. This inhibition of site-specific modification of CDK7 at Ser164/170 prevented phosphorylation of RNA polymerase II and reduced basal phosphorylation of ER-α at Ser118 in non-stimulated MCF-7 cells (resulting in its down-regulation). In MCF-7 cells, estrogen induced strong phosphorylation of ER-α at Ser118 but not at Ser104/Ser106. ROSC prevented this estrogen-promoted activating modification of ER-α. Furthermore, we sought to determine whether the activity of ROSC could be enhanced by combining it with an anti-estrogen. Tamoxifen (TAM), a selective estrogen receptor modulator (SERM), affected breast cancer cell lines irrespective of their ER status. In combination with ROSC, however, it had a different impact, enhancing G(1) or G(2) arrest. Our results indicate that ROSC prevents the activating phosphorylation of ER-α and that its mode of action is strongly dependent on the cellular context. Furthermore, our data show that ROSC can be combined with anti-estrogen therapy. The inhibitory effect of TAM on ER-negative cancer cells indicates that SERMs crosstalk with other steroid hormone receptors.

Sheila · 01-24-2012, 08:42 AM

It must be up to the Plastic Surgeons and Oncologists....my sister was NOT allowed to get any fills while going through chemo, and for 3 weeks after completion. Also, none is allowed if undergoing radiation. She begins again tomorrow with 50-75 cc in each side. This will be a weekly thing, or every 2 weeks if she chooses.

sarah · 01-24-2012, 08:54 AM

Hello,
I have a friend who's been on Raloxefene for about 9 years, I don't think you could get her off it. She says it also protects the bones. She's a big reader and up to date on things so you might want to ask about Raloxefene over Tamoxifen.
all the best
Sarah

chrisy · 01-24-2012, 09:05 AM

Do checkout other options to "manage" the ER side, but remember there is more than just a "horror story" on tamoxifen! It has saved many many lives over the years. It was the first targeted therapy...

You definitely want to hit all the targets, there is some evidence that blocking one(her2) can up regulate the other. Cancer is sneaky and will look for a way. Don't leave any windows open!

twosenuf99 · 01-31-2012, 10:19 AM

Thanks everyone. I saw the radiation onc today and she is insisting where I started with the aggressiveness of the cancer I need to do rads. I am still not sure what I will do. My biggest fear is pain and damage to my lung, ribs or chest wall. Not to mention that I may lose the expander that I have been filling. She says all these are rare but unfortunately I am atypical and the stuff that shouldn't happen to me does.. The onc said chemo related nausea was a breeze with the new meds they have to counteract it.. Problem is none of them worked for me. I just learned like many others to cope. As for the Tamoxifen(sp) I have not decided on that either but I will definitely ask about the Raloxefene. I was also told today not to continue filling the left expander until after rads because they will not be able to position the machine properly. So now I worry about filling the right and looking lopsided.. I know it is trivial to worry about the way I look but I guess I am just really done with all of this. So stressed out over what to do, I just want to go to bed and never come out. Thanks again for the advice. I appreciate it.

Rich66 · 01-31-2012, 12:56 PM

The beauty of a daily pill like Tamoxifen is that if side effects creep up, it's easy enough to change course. On patient boards, probably more likely to hear complaints. my mom had far less issues with Tamoxifen than Arimidex. And she was taking the Tamoxifen it with low dose Xeloda and Cytoxan (and anti-inflammatory supplements).

chemteach · 01-31-2012, 09:11 PM

Jackie, thank you for the abstracts on the research about tamoxifen. I will certainly mention that to my onc next time. I really appreciate all of your knowledge in the many areas of breast cancer.
Tracy, I would think that you'll get to continue reconstruction after the radiation. It will work out because you've got to do what is best for yourself. Hang in there. Your decisions will become clearer. Janet

Debbie L. · 01-31-2012, 10:08 PM

Tracy, I have no experience or advice with the expanders but I do have a question about the ERPR. It looks like you had several biopsies, and then surgery? Were all the ER values consistent in those differently-gathered tissues? Or was there only one pathology that reported the ER? If so, was it done a a major (preferably Comprehensive Cancer Center) lab? If there is ANY doubt about this, I suggest that you send (or have the lab send) your tissue for a second pathology opinion at a Comprehensive Cancer Center.

There are two issues here. Of course, you don't want to miss an opportunity to take a drug that can make a big difference to your risk of recurrence. But on the other hand, neither do you want to take a drug that offers you no benefit, and side effects to boot.

Debbie Laxague

KsGal · 02-01-2012, 03:14 AM

I have expanders, and they fill them 100 each time. I think if I got the max you were talking about I would pop! lol. Im not getting fills now while I do chemo, by my own choice. As far as your other questions, if you are in doubt about the tamoxifen or radiation, maybe it would be good to just get a second opinion? And ask lots of questions, gather information. In the end, of course, it is your body and your choice, but I do kind of lean towards if there is anything that can even possibly help you fight this nasty cancer and beat it back, take it.

sarah · 02-01-2012, 07:16 AM

I think you're getting distracted by ifs and maybes. the most important thing is to kill the cancer and you know that. concentrate on that and do what they suggest. if you're not confident with the medical advice you're getting, get another opinion. you must feel confident of the advice and treatment. As someone who had a cancer, called cured, come back, I'm inclined to do more rather than less. for nausea there are good mediations and eat ginger and drink ginger ale. take Raloxefene at night. actually haven't heard of bad side effects from it.
herceptin of course is the most important drug to take when you're HER2+
ask them to fill the breasts evenly so you can stop at any moment and be even and I would suggest keeping them small and easy to monitor.
Look towards the positive not the negative. the treatment is helping you survive and have a life to enjoy. The side effects are just the cost of having that opportunity.
Enjoy your life.
the treatment will end and things will get better.
health and happiness
sarah

tricia keegan · 02-01-2012, 04:01 PM

Just to mention re the Raloxifene, this was tested on ladies who had NOT had bc and was found to be beneficial in preventing it while protecting the bones to a degree but has'nt been tested on anyone with bc as yet and is usually given to those who cant take Tamox or have severe osteoporosis after bc!

I did'nt like the potential serious side effects of tamox so had an ooph and take Arimidex ever since.

Jennt28 · 02-02-2012, 01:39 PM

Tracy, My RO advised the 33 sessions (incl 5 boosters) to all three areas. I looked at the stats and have said yes to breast and axilla ( 1/1 of my nodes was positive) and NO to the supra-clavicular because it looked like there was only a 3% benefit gained by radiating that area but some significant side effects risks.

I won't start rads until after chemo. Currently just done second FEC of three, then 12 weekly Taxols.

Oh, RO has also given the option of 28 sessions using a new technique where they do the boosts at the same time - extra blast in the boost area at each treatment. I'm leaning towards either that option or the third option which is the Canadian shortened protocol (but my RO likes to only give that to elderly women so told me I'd really have to twist her arm for that one).

regards Jennt28