TRIPLE POSITIVE GROUP

Hi Laura,

I am so sorry that you are having all those troubles. Taxotere is not easy but you have only one left and then it is over. The surgery will not ususally take place right after chemo, I believe there must be at least a month in between, and after a month hou will feel so much better. Now I am new to this myself and only done two chemos but everybody says it gets better. And having surgery after chemo is the only way to see whether your tumor will have response to the drug which is not possible when you first have surgery and later chemo. Is the area where you live in TX affected by the flood too? I am not in US, I live in Sweden, but I saw on the news. I wish you will feel better soon, Cherr

thank you cherry-SW. We are farther north and not really affected but my husbands family is and it's scary. I've decided not to take tne Cymbalta and try other methods. I just hate that my onco just chases everything with another prescription with worse side effects. I have to go back to work soon to keep my health insurance and I need to reduce these SE to do so. Just got to keep the positive ideas in my head :

Met with RO this morning for 3 month check, everything looks great, he doesnt need to see me again! Had 3 month echo done, results in few days. Its been a week since my first herceptin only, really havent noticed anything, no bone pain, nothing. I did have mild headache couple of times, chalked it up to not enough liquids. Understand it may take a while for fatigue to get better. Traveling this weekend to help daughter and SIL celebrate birthdays.

Laura, hang in there, there is no much choice anyway and of what I understood the bone pain after Taxotere does go away. I have been reading this thread from the beginning and your SE are typically Taxotere but it gets better. I hope it will resolve itself for everybody in TX who is affected by this flood, it is very scary I agree, Cherry

Hap - yes, PN is one that sometimes improves with time. Conversely, placebos sometimes make people feel better if they don't realize it's a placebo. But it's still kinda amusing that the placebo resulted in a higher perceived improvement than the actual drug!

I have my first appointment with my oncologist tomorrow. Any advice on what to expect, questions to ask, things to take, etc. would be most welcome!

fleur - take someone with you that can take notes, or ask the doc if you can record with your phone. This is your first consult, correct?

deni - congrats!

eleanora - I would advise an echo at the six month point. I started my anti-hormonal a month after my last chemo, and I did not do rads. Some start during rads, some wait to make sure which thing is causing which side effect. I answered your other question about risk on the thread you started a minute ago.

Congratulations deni1661! Wish you DFS for many many years to com

FleurDeLis49, I had my first appointment with oncologist two weeks ago. I was told to make a list of questions but I understood that before I could pose a question I had to know what I wantedto know. I red my diagnosis and a lot of info about it here on the boards. Everything that you do not understand just write it down. The questions about the tumor for ex, what its characteristics mean and how they influence your future life in terms of cancer never coming back. Then probably why they recommend this treatment rather than the other, what are your options pro and cons, SE vs higher dfs. How you can avoid the long term side effects, what would happen to you body while chemo, rads, Tamoxifen etc. What to eat and not, what can you take to prevent SE. Read about Herceptin and ask your questions. Their answers will be more specific If they know what you want to know. This is what I did but I was dissappointed anyway, that there were no tool to predict my case and no way to do monitoring rather than annual mammograms and ultra sounds. This uncertainty is very hard to accept, that things can happen even though you do everything you are supposed to, the treatments and still cannot be enough. This for me was the hardest part. Good luck,Cherry

hi Melanie, I just figured that out myself. There's a section under treatments for "targeted treatment." I couldn't find it for a bit either. It's separate from chemotherapy.

Hi all, I've been reading lots of posts and trying to catch up after having not been on the boards for awhile. Some times reading really cheers me up and sometimes it really bums me out. I just had round 3 of TCHP yesterday, 3 down, 3 to go. I'm having a really hard time deciding about surgery. My MO tells me even though I am 46, tumor size was 4cm but has shrunk to 2cm, a triple positive, grade3, aggressive tumor -she says I am a candidate for lumpectomy. When I first was diagnosed back in June, I instantly thought get these things off of me I want a mastectomy. But since I had chemo first and have had time to really read and think -I'm as unsure as ever. MO says she thinks (and she understands) people try to cure the cancer with surgery -but it's really the chemo that is going to decide if your cancer is going to come back. And I know recurrence rate is higher for lumpectomy and survival rate is same. I think I'm leaning towards lumpectomy now.. Also because implants scare the heck out of me. If anyone knows of stats that would be helpful in decision making please let me know but I really am starting to think they just don't exist and I just have to be comfortable with my decision.

thanks for letting me ramble on... no need to even answer me, it's just good to put this out there.

Thanks for the reply SPECIAL, I definitely would feel most comfortable having at least the one ECHO post herceptin and will ask for it at my first follow up. !

HI All,

Puma Biotechnology has patient communication material about the newly approved drug called NERLYNX . They are looking for people currently on Herceptin to review this 3 page communication and answer the questions below. However, the document is still confidential, so all who review (including us) need to sign a confidentiality agreement.

If you are interested, please PM us and we'll get you the confidentiality agreement, and the document.

We, and Puma Biotechnology, greatly appreciate your help with this!

Best,

The Mods

Some of the feedback questions that they would be interested in receiving are the following:

1. Is this language simple enough to be understandable? If not, what specifically needs to be simplified?
2. Is there anything we're not explaining fully or clearly enough?
3. Are there any messages missing?
4. Are there any messages that are unnecessary?
5. Are there any messages that raise questions for you?
6. Are the messages in Stage 1 hitting the right tone and providing the right information for women who are just diagnosed/just starting to plan their treatment?
7. Are the messages in Stage 2 hitting the right tone and providing the right information for women who are just finishing their Herceptin therapy?
8. What is the best term to use with care partners when referring to their patients/loved ones?

Thanks for the advice for my consult! I'll let you know how it goes.