TRIPLE POSITIVE GROUP

Wind girl,

Yeah I wasn't thrilled to be doing this again but appt least now they have stuff for HER2. My mo told me a few years back it was the worst as they wouldn't have been able to do anything for me but now with Herceptin and all the other stuff they have it's a whole other ballgame.

I have enjoyed excellent health for the last 25 yrs since the first bc, and I was healthy before that, don't smoke don't drink, vegetarian, runner everyone was shocked when I got sick the first time. This last time I was a vegan so who the hell knows?? But I feel great and did. 3 mi yesterday so just hoping the arimidex doesn't give me any trouble. So far so good.

oconnor are you sure it's 2X a year. I thought Zometa was 1 infusion a year. Prolia, which is what I get is a shot 2X a year. I've had it twice. So far no SE, non, zero, zilch.

I will Bridget. Was thinking of you the other day but have been very busy with work this past month. Hope I can see you when you come out even if I have to wait with you in the waiting from to see Dr. C

Yaaaay Runningcello good news

Runningcello: Yay, blessed with the curse!

A few months ago I was really hoping mine would never come back. Congrats to you runningcello!!

I had my Muga last Thursday. I've now dropped to 52. My MO didn't want me to get my Herceptin today. I'm not having any signs of heart failure so she's concerned this treatment might put me over the edge and I'll start. She's recommended that I see a cardiologist. She thinks he'll do an echo in his office and be able to tell me if I can start back up or if I'll need to wait a month and get another Muga. I knew this could happen but I'm still shocked and concerned. This will now add extra time to the end which Is a little depressing. I was hoping to be done the end of August.

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.