TRIPLE POSITIVE GROUP

TonLee,

You may have already seen my posts about taking metformin and are looking for others, but just in case, I will reply here.

I wanted to take metformin originally because by the time I was 5 years out from treatment w/chemo followed by some tamoxifen, my metabolism was slowing down so much that weight management was becoming next to impossible. Up until dx, I exercised twice a week for half an hour or so and stayed with normal BMI.

With tx I gained 25 pounds, and lost a lot of muscular tissue due to the steroids and the 6 bouts of projectile vomiting despite taking anti-anxiety meds and Zofran (which don't exactly match up with maintaining a daily exercise program). It took me 5 years to lose 20 of the 25 pounds and get back to a normal BMI, and things had changed... I was having to exercise daily for an hour, and for the first time in my life, dieting had no predictable results. I could go on a 700 calorie a day diet for weeks and only lose 2 pounds a month. It just does not work when the metabolism has slowed down so much. If I didn't exercise even for a single day (because I was sick, or traveling or what not), the weight came roaring back. I was seeing the cancer center dietitian and we both understood that. So I got a referral to an endocrinologist from my PCP, and made sure I had all my ducks in line with lab documentation.

Endocrinologists deal with metabolism, such as diabetes. Yet no endocrinologist would book me in because I "did not have any disease process". Finally one did agree to see me. He then repeated the labs and agreed that based on the lab evidence, my diet was exactly what he would prescribe for me. He said I did not have diabetes. He said the only other recommendation he would make would be to increase daily exercise to two full hours a day, 7 days a week. I requested metformin, and explained to him that trials had just begun for cancer patients to see if it helped, because a female physician in Canada had recognized that the the patients she had who happened to have diabetes and also happened to be on metformin seemed to have less problems with breast cancer. He prescribed it for me. I had tried to join a clinical trial for it previously but had been told that I was "too far out from original treatment".

I take a low dose with meals and it has helped with the constipation I was having due to being dried out with the chemo and tamoxifen. It only helps with weight loss if I continue to exercise at least 1 hour per day and maintain a conservative diet.  If I have a day when I cannot exercise, I fast for most of the day. It works extremely well for me, and I am so grateful for it.

Hope that helps,

A.A.

Ashla  At one point I asked her (even though I knew the answer) "How do we know if the chemo will work." She told me there were 40 women out of 100 my age with my diagnosis that didn't need any therapy other than surgery. She said if they knew who there were they would not be giving them chemo.

So the comment "'This is interesting data which suggest that a subset of women with HER2-positive breast cancer may not need chemotherapy to treat their disease,'  Adam Brufsky, MD, PhD, professor of medicine at the University of Pittsburg School of Medicine, told dailyRx News.

'The issue is, at this point, we are not 100 percent sure who these women with HER2-positive breast cancer are.' " doesn't yet sound so different from what my onc told me 2.5 years ago. Interesting but I would really like to see if the numbers are that much different from what we already know about some people not needing chemo… but we can't identify them yet. That would be a very revolutionary question to solve.

I asked my BS about neo adjuvant. He said that was for really big tumors. I was WTF. At the time they thought mine was 7cm (not that 6.5cm with 5.5cm being invasive is all that small). I didn't meet my onc till 2 weeks post surgery. I also got the feeling that they did neo adjuvant if they knew your nodes were invaded but not sure. To be honest I wanted the shit out of me as soon as they could. Also remember I started chemo fall 2010. Things actually changed in a year.

ashla, did they stage you before you started chemo?  What was left when you had the lumpectomy?

Question for all:  I finished chemo 4 months ago; still doing Herceptin every 3 weeks.  My fingernails are very thin and brittle - they break easily.  Is that from chemo (taxol) or Herceptin?  Or both?  Any recommendations for what to use to strengthen them?

Hi ladies! I'm new...I think this is my area....dx with invasive ductal and lobular...HER2 +, ER+/PR +.....am I in the right spot?

lago,

The immensity of the tragedy of adjuvant chemotherapy is clear when we acknowledge that if that 40 out of 100 don't need anything but surgery, then the group that doesn't need chemotherapy but benefits from some combination of surgery +/- radiation, and +/- hormonal therapy is even larger....  making the group that benefits from chemotherapy even smaller yet. And if one adds into that number any as-yet unknown group whose recurrence rate was increased by doing chemotherapy when they would have done better without it, the number who do not benefit from chemotherapy becomes rather high. To that one should add those for whom chemotherapy or the support drugs given with it contributes to heart disease, allergic reactions, etc. When it comes to adjuvant treatment of very small tumors in particular.... how many are they "saving" vs how many are they "losing"?

Dana, Yes you're in the right place.  A lot of good information here.  Thanks for joining us.

ashla, really interesting study.  Good point though Lago – does seem like maybe they could try that in the neoadjuvant context and see if it’s working.  It would be great to be able to avoid chemo.  In retrospect I think the neoadjuvant makes a lot of sense, but I was very anxious having it inside me, esp. since they can’t do the final staging until your surgery.  I was much calmer when it was out.  It must be really reassuring to see the tumors shrink though. 

I also think it’s interesting that the er+ women had a lesser response to it, but I think it makes sense, since the tykerb and herceptin are aimed at the her2+ part.  So the estrogen-fueled parts of the cancer wouldn’t respond as well. 

Dana, welcome and sorry you have to be here.  Lots of really well informed women on this thread!

Alaska, that’s an interesting point.  I do personally know a woman who had a very small her2+ tumor (smaller than 1 cm I think), did a lumpectomy plus radiation, and is now being treated with chemo because her cancer metastacized to her liver.  I think she was on a hormonal as well.  She’s older too, over 60 now, so you would expect her tumor to be less aggressive.  I do hope that eventually they will know who needs it and who doesn’t.  The other thing is that they don’t know how people will react to it.  My chemo experience wasn’t that bad.  Tamox isn’t bothering me much.  My EF is still where it was.  Hopefully all that will continue, and the cancer will stay gone.  I feel comparatively fortunate.  It sounds like you have really been through the wringer.  In your case, maybe the potential benefit wasn’t worth what you’ve been through.  On the other hand, maybe you’d be fighting for your life now if you hadn’t gone through that.  I know we would all love to have a crystal ball!!!

Thanks AA....you are a very valuable source of info Everything about me seems to be different after this past year. Everything.

Welcome Dana.....