TRIPLE POSITIVE GROUP

Francis---Thats interesting... We are all different & Surgeons are different... I was told I can get a masecromy after all chemo is over if I want that insurance company will pay for it. Sometimes I think I want to do this to feel safer.

Yes... slowing down is so important in these decisions. I felt like It was such a whirl wind from diagnosis to treatment. I could have waited for the lumpectomy until after chemo but wanted it out.

I saw the surgeon yesterday for a 3 month follow up and asked about masecromy. He said that I can choose this at any point but he doesn't believe it is necessary as my margins were clear & no nodes involved.

So excited that my last chemo is tomorrow. Hip hip hooray!!! Yay!!! Woot woot!! YESSSSsss!!!👍🏼😃🙃

I still have radiation& another year of Herceptin but somehow I'm feeling so relieved. My onc is going to test my heart again & after radiation do another petscan. That makes me feel better to verify no spreading. Wonder how often I can get a petscan without nuking myself too much. lol. 😳

Health 123...It depends on the numbers it is like an algorithm I'm told but I'm not mathy... I believe Herceptin is being used in all stages now for HER2 bc and at some point will probably be used based on blood test risk from all that I'm reading in curent research. Chemo is based on doctor's recommendation and numbers...

I know someone stage 1 that did not have chemo and another that did one had lower Her2 status in the tumor. Talk to yourdoctor... And you can always get a second opinion. 😊

song, I think there are a couple of people on here whose tumors were too small to require it, but I believe they fought for it. Seems like dancetrancer (maybe?) might have been that way. Had I not been triple positive, mine was considered In The gray area. Not big enough for a chemo requirement and not small enough to just say no. My first once pretty much believed that no matter what size, if you were triple positive, you needed herceptin, and chemo came with it for effectiveness, as they hadnt tested it without chemo. He fought insurance companies to get it for the tiny tumor people.

I didn't need Neulasta either. Got close at the end. I should have added with my symptoms on Taxol, I had weekly taxol and not the dose dense every three weeks. I think that makes a difference in recoup time. Just when you feel better, you start over, lol

i had the teeny tiny tumor...although dance tracer does as well I believe. I had a lot of high grade DCIS, but only 1.5mm of IDC. I wanted the herceptin, and chemo was part of the deal. There are a couple (horse girl maybe?)who chose herceptin only.

Kthielen: be sure to ask your MO about the contraindications (evidence based or anecdotal) for cold caps based on the location of your mets. I have pretty significant skull mets, so wanted every drop to penetrate there.

kthielen - so sorry about this, I iced fingers and toes and it worked well for me - I started icing with bags of frozen peas from the first infusion. I also cut my nails short and painted them with dark opaque polish for the day of chemo - there is some thought that light penetration to the nail bed is part of what causes issues. The day after chemo I removed the dark polish and painted on a coat of clear nail hardener. I painted a coat a day for 7 days, then removed it and started over until the next infusion. For the next infusion I started the process over. I used a non-acetone remover, and I had no lines, ridges or discolored areas. I did lose a pinky toenail but it grew back almost immediately and I think it didn't stay cold enough. I had to have my wedding ring fingernail removed well after chemo as it started to lift and would not stop even as it grew out, but it had gotten wet underneath and needed topical meds. I have also read that cold capping works best with chemo agents other than Adriamycin. Wishing you the best as you move forward, please keep us posted and let us know how we can help.

song - here is a link to a thread re small Her2+ tumors and systemic therapy:

https://community.breastcancer.org/forum/80/topics/781897?page=1

Thank you Special K. 😊

With Taxotere... I got finger nail disk lines but nails remained intact so far!!!

Hair fell out but started growling about back 2 weeks ago with one treatment left. Yay!!!

Cold caps research is not long enough... Or cold caps approved . my onc nurse said their are trials.... Some evidence... cold caps for her2 cancer can target cancer to establish pockets in brain... Further info needed.... I decided hair loss with a good hand tied wig was preferential until I have good info. Also insurance doesn't cover this.

Zoziana---

I'm a research fanatic but but try to stick with legitimate sites for info about current treatment & research. Recently the bc support group that I attend has an oncologist that just went to a conference in SF, CA and he brought back a bunch of new info from studies ... That I then started to research.

Beware of sites that do not have large sample sizes & post info. A lot of Her2 research only goes back 10 years... So I'm always looking for stuff.... It's an obsession and part of me feeling empowered. For others this can be anxiety provoking to know the info so perhaps limit your google time & go to only legitimate sites.

My main sites:

Breast cancer.org

University San Francisco

Stanford

Mayo clinic: http://nbcf.org.au/news/research-news/monthly-brea...

American Cancer society- but sometimes out dated info.

Great stuff!

Health23- yes, my IDC was 3mm and textbook says, "no chemo". But I read, read and read and came up with my own plan. I fought to have my MO (went to 3 consultations with different docs) prescribe Taxol/Herceptin. Please read the thread that SpecialK posted. This thread helped me make my decision for treatment and includes the clinical trial in Boston that showed great benefit with Taxol/Herceptin combo and small T1 +++ tumors.

Ktheilen- I cold capped and kept 95% of my hair. Like someone said above, the Taxane family does verywell with cold-capping.

Jerseygirl I remember my 1 year in New Jersey (just outside of Phili). Swore I would never move south again. To damn hot and humid in the summer

Lago your info on Herc/Tykerb helped me so much. We had an appointment with Onco, and we were so much more relaxed, I also did more research and I did see that they did studies that it's supposed to be pretty good. She is not on full dosage of Tykerb yet, but with time. There is so much to learn!

How often do you Ladies do an Echo? Dani had it done before tx started. and being she has no heart issues…

There was some confusion regarding getting Perjeta from Insurance, they did not ok it right away, bcs as far as they are concerned she already tried it (last yr) and it did not work. But really doc should have fought it. But then Tykerb got approved for her asap, so she just started on Herc/Tykerb for now and we'll leave Perjeta for another fight. No chemo at this time. Onco is already concerned enough she is takg some difficult stuff, she has another 2 meds she is already on.

Song it's so interesting that whatever I read the take is that these days, if the tumor could be removed in one scoop, if it's not in more than one spot and if it's in one breast only, then they encourage lumectomy and rads. Some people have very small breasts, and if the tumor removal would be aesthetically unacceptable then MX would be a choice, or it it's a few lesions etc... But in this site, different threads I see many more women are still opting MX. In my daughter Dani's case, she had a lumpectomy then radiation then chemo, she had some positive nodes, and surgeon in a large Cancer center said she did not need a MX. What can I tell you, at the time I was thrilled bcs she was in her mid 20's, it was so hard to digest. But docs keep saying MX is not a necessity. We did go to quite a few opinions, and not one of them recommended it. Again, at the same time I am still surprised that so many women DO have MX. It's not an easy choice.

She did have ooph/hyster when she got dx with MEts, and so many ladies are not being recommended that, although that are so many hormones going through the ovaries....So I don't quite get it. I know it's not ideal, of course there were repercusions, in her case, menopausal in the 20's really? anyway but...

that it is, humid, humid, humid. Sticky, but my orchids love it.

Songbird: I find research empowering, too; thanks for your favorite site info. I asked re: the article because I am in a study through Stanford (not where I am treating but where I went for a consultation opinion) that tracks cancer markers in blood before, during, and after treatment . It's all very early phases, not even a clinical trial. Some new sort of technological breakthrough. Or not. But I decided to do it because it is only blood draws (and I have a port), I live close by, and maybe it will help some folks down the road.

Nolagirl112: Thanks for the side effects summary. I have all of these things and I'm only heading into week #3, but it is always good to know one is not alone and is "in the same club". Isn't that what is so great about this site, aside from its educational purpose? So Happy for you and for May15! I'm slightly envious of all your hair, but I won't begrudge you that: enjoy!

For Mom: I'm glad they approved the Tykerb. From what I have read, that may be very helpful in getting the Herceptin to work. Keeping positive thoughts in your daughter's direction.

And for whoever mentioned the focus/vision haze (I forget to write all this stuff down...), I have noticed that developing in the past few days. Kept thinking my glasses were smudged...but nope. Also a bit of dry eye developing , so using drops.

Rash ladies: Cortisone 2.5% prescription is not helping me with the hand rash, but I have a stronger one I use for occasional eczema flares, so I tried that tonight and we will see if it is better. I will report to nurse tomorrow. So far, no where else, but it has moved from just knuckles to whole top of hand.

Hair loss : Quest. for those who only had /have weekly Taxol/Herceptin, and nothing else: At what day (or after which week) did your hair fall out? Was it gradual thinning and shedding or was it clumps? How long did the process take? I have heard a lot from folks who did AC and others first, but I am curious. I have a hat with hair attached on hand, and chemo scarf/caps , but mentally, I would like to know. And possibly book an appt. with my stylist to do a super short cut . Articles I read (on this site) said Day 15-21, but didn't describe the process or extent as it occurs. I just like to know my facts and have a plan!

#3 tomorrow.

Zoz...I was about 3 weeks in when hair loss started. It was very gradual for me. I actually shaved my head after chemo, because at that point I was scraggly looking. I cut my hair super short about halfway through. My hairdresser did it for free :-)

momallthetime Glad I could help. It always helps to have the info before you meet your doctor. That way you don't get all caught up with the names of stuff and can focus on the plan.

I only had my heart tested before herceptin. I was always asked about shortness of breath etc but never had another test, even after I was done. This does not seem to be the norm though.

Sher0402 my nail issues started in my toes. I saw a podiatrist. I eventually had to get one removed. When it went to my fingernails I saw a dermatologist. To be honest I found my podiatrist more knowledgeable about the issue…but she is a very special doctor. Even my NP says she's the best "doctor" in the city.

Kthielen - I used Penguin cold caps. I think they provide the best fit, and therefore the best chance of success with cold capping. Here is a link to cold capping FAQs, with lots of good information thanks to one of my fellow former cold cappers: https://community.breastcancer.org/forum/6/topics/...

Good luck with all your upcoming treatments - I'm so sorry you have to deal with this. (

zoziana, mine started thinning around day 18 or so, but it was still fairly thick when I went in for my second infusion. About 4-5 days after that, it started going more quickly, so I buzzed it short. I can't remember how long it took to basically all go (though I did have some hair that never fell out. That was some tough hair!)

Regarding echos - I had one every three months.