TRIPLE POSITIVE GROUP

thank you all for your words of encouragement! The doctor said my period would be coming back it was just a matter of time. Finally it did! I don't think the doctor sees it as a problem or anything

Thanks, Ashla! I was very happy to read that there was no problem with osteonecrosis of the jaw, too. I have been very worried about that as I do believe I have a tooth that may not be able to be saved, and I already had had three shots of prolia, and had refused my next one, as I want to have my tooth evaluated and taken care of. When my onc asked why I didnt want my next scheduled one, he did not disabuse me of my plan to stop it to avoid ONJ, So I hope he gets the message too.

It is important to note for those on Prolia (or Xgeva, which is higher dose of the same drug) that ONJ incidents are generally in those being treated for bone cancer (not breast cancer mets to the bone, but actual bone cancer) and getting much higher doses of the drug. 

tomboy - I have been advised to schedule any dental work for the mid-point between injections, but that is for non-invasive procedures.  If I needed to have something more invasive done I would probably skip one injection.  This drug works relatively slowly so I don't think skipping one injection would have a deleterious effect.  I was advised that it might take up to two years - four injections - to see a change in my density, which was pretty accurate - although the degree of change for the positive was pretty surprising.

Thanks, you guys. I have absolutely no side effects, and after my third shot, My density had improved tremendously. I am glad to hear what you said about prolia too, specialk. Tremendous! I will talk to the dentist, and then do more prolia when I see my endocrinologist, see what she thinks.

Tresjoli2, I get where you're coming from!! My tumor was 3.2cm and even though my one node from the SNB was clear, they did find lymphovascular invasion in the fatty tissue around the node. I had the lumpectomy and now feel completely, totally fine and healthy. The idea of volunteering for poisoning now just drives me batty.

I'm not sure what my FISH score was, I don't really understand the results:

POSITIVE (Dual-probe HER2/CEP17 >= ratio 2.0; with an average HER2 copy number >=4.0 signals/cell).

Either way, it sounds like I'm definitely positive and should do chemo, Herceptin and Tamoxifen, but I REALLY, REALLY don't want to. It's not like you can do it once to test it out and then stop - if you get permanent side effects, that's it.

hi ladies,

I just finished Taxol/herceptin mid April and now am doing just herceptin, every three weeks until January. I had a very small tumor also 7mm, no nodal involvement, clean margins, but very HER2+.

I was treated at UCSF in San Francisco. The Dana Farber report that came out inDec. 2014, was the one that showed how much benefit taxol/herceptin gives for even small tumors. I had triple negative bc back in 1990 when I was in my 30's. I was treated at Cedars Sinai in Los Angeles with CMF. Again a very small tumor, under 1 cm, no nodes but very aggressive. I was a non smoking, non drinking, vegetarian runner and the last person my docs thought would present with cancer. I didn't want to do chemo at the time, but I most likely would not even be writing this had I not. The chemo was not bad, I didn't lose my hair, it didn't put a dent in our sex life, and I worked all through it, My husband and I are screenwriters and I didn't want to tell anyone at the studio what was going on and because I kept my hair no one knew , until I told them years later. At the time they had given me a poor prognosis, as they knew so little about my type of cancer, yet here I am 25 years later!

Anyway, back in Dec when we were planning treatment at UCSF, I also had my pathology etc sent down to my doctors in Los Angeles. Surprisingly my docs in LA thought if I did nothing but take arimidex, I'd have 90+ percent chance of no recurrence. The guys at UCSF felt differently. Even though the tumor was so small, they thought I could definitely use the benefit of just Taxol/herceptin which is considered a "gentler" chemo, followed by herceptin alone would push me into the virtual 99% no further problem zone. I am not a gambler, especially since I've already done this once before. I figured, if I didn't do it, with my luck I'd be one of the 5%, so I said ok to the taxol/herceptin. Both my parents lived into their 90's in great health , and I thought why not give myself a shot at making it that far. Everything is a crap shoot, you could get hit by a bus crossing the street to get to chemo, but at least if anything else happens I can say, well, I did everything possible at the time. No regrets.

I was concerned about losing my hair, but they suggested cold capping. I thought that was bulklshit when I heard about it, but my dr who runs the cancer center at UCSF told me it worked and and wow! I kept my shoulder length hair through 12 wks of taxol. Without it I'd have been bald. If one did not know I was having chemo at that time, it was impossible to tell. Our sex life has continued great through the whole thing, as my doc says, use it or lose it.

Don't get me wrong, taxol is nobodys idea of a picnic, and everyone is different, but there are things to help deal with any side effects. I handled it ok. I realize that everyone can react differently to the same drugs, no one has exactly the same experience I'm just sharing mine.

I took supplements all through chemo, still take them now, I have had no neuropathy problems. A friend of mine who is an dr and had the same treatment at the same time as I did, advised me to do that and it has worked for me.

I'm getting my 3rd herceptin alone treatment this afternoon, as a targeted biologic it only goes after HER2+ proteins, so there are no hair issues, etc. Any heart side effects that they write about are monitored by a MUGA test every three mos, so far I'm doing just fine. I am taking arimidex also as a hormonal since the CMF back in 90 put me into chemopause.

Everyone has to make their own decision, and as someone who really did not want to do any of this I'm now very very glad I did. By the way, taxol in small doses, 1 time a wk for 12 wks is much easier to tolerate. The only thing is it was a pain in the ass to have to go in once a week, but I'd rather have the small dose every week compared to a larger dose once a month. Sort of like baby steps.

Hope this helps, since I've just recently finished thought I'd weigh in here. Also I didn't run during the 30 mos of taxol, I walked a lot, now back to running again.

Such a hard position to be in. Its wonderful to be able to say "my tumor is so small" but what a quandary it has put you in. Well better than having to say, "the tumor is so big I have no choice".

You probably already know that the most difficult part of chemo would be the taxol, Herceptin alone is a breeze.

On the other hand, it would also be reasonable to forego chemo and just be extra vigilant, wait and watch if something happens, hopefully catching early, and do chemo then.

I think how we approach these decisions has a lot to do with our personalities, how much of a risk taker we our when making other decisions in life. neither option is wrong, choose the one that feels right for you. Do you need that extra protection to feel like you can move past this event and not always be looking over your shoulder waiting to see if it comes back or would it upset you more knowing that you've put toxic chemicals into your body, perhaps needlessly. good luck.

That's one of the few times I've read someone say they managed to keep a normal sex life - that is incredibly good to hear. Losing that frightens me more than almost anything else (well, a lot frightens me about this whole thing, but that's a biggie.)

Thanks everyone. I found everyone's thoughts and thought processes so helpful. I decided.today to do the taxol and herceptin. I decided I was one of those people who, if something happened down the road, would hate myself for not doing chemo the first time around. So I signed myself up.

Yeah for decision made! Hope you find, like many of us do, that making the tough decisions is half the battle. It starts to get better once you have a treatment plan in place and feel like you are moving foward. Good luck with chemo.

running cell,

I am on arimidex, and I have heard that drug associated with weight loss in some people. I started it a week ago and lost 4 lbs, I'm small so was not trying, but it's not helping my appetite any

I hope it'll have that effect on me. I haven't gained weight from tamoxifen but I certainly wouldn't mind losing 10 lb

when do they usually start prolia shots? I am finished chemo, but still have herceptin infusions and 5 year pill for my cancer, I already have osteopenia and have fallen and fractured my elbow, ribs, shoulder and orbital bone. The last fall was August of 2014. But had mastectomy January 2015, and started chemo February. 2015 so now that chemo is done, forgot to ask about time frame for prolia!

I'm another one that doesn't have any lasting SE's. In fact, I'm in better shape than I was before this all started. Well, I guess there is the problem right now with low EF from the Herceptin. But I do believe it will go back to normal when I'm done with the Herceptin.

Think all of us here owe a debt of gratitude to Perelman, Lily Tartikoff and Dr Dennis Slamon...

( and likely hundreds of nameless researchers before him)

Revlon...1 million donation to cancer research in honor of Dr Dennis Slamon.

http://www.marketwatch.com/story/revlon-charts-new...