TRIPLE POSITIVE GROUP
Comments
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Hi Cherry, I just had number 20 of 25 radiation treatments and my skin is doing really well. It looks only slightly tan. Right after radiation treatment I apply Aquarphor before I get dressed and then I apply it again at night. I take a shower in the morning before radiation because the dr. didn't want anything on my skin 4 hours before radiation.
Special K and Vicky, I echo a lot of others on this board in saying how much your posts mean to me. I do not post a lot but I check in and read up on everyone and you both, along with many others, are so kind to take the time to answer questions and spread some kindness. So thank you both and thank you to everyone who posts and thank you to those who don't post but I know are thinking of everyone.
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coach - I am so very glad that you liked Dr Wright, felt his genuine caring, and got the information you were seeking. I felt somewhat responsible for your trip to see him - like a matchmaker, lol! -and I’m glad he didn’t disappoint! It sounds like you had a thorough discussion and he addressed your concerns in a way that provided that ever elusive peace of mind. He has been a beacon of light during my treatment, I wouldn’t trade him for anything!
red - yay for the last one! I have not had what I would call regular imaging - had a pre and post chemo PET, a post Herceptin PET, and one at the 5 year point. Due to skin healing issues I have not had any of my implants for 3 years so have not had a MRI to check integrity.
Emily - good to “see” you - glad to help!
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SpecialK ...
You are a great matchmaker. If he passes DH's test, he is a keeper doctor.
I pray everyone in this 3+ community can know the peace I feel today.
It gets better and better ladies.
Vicky
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coachvicky, sounds great, it will give you a peace of mind. I am considering a second opinion on the follow-up myself
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emily_mh, thank you. I will look up Aquarphor and will book myself into the radiation preparation test tomorrow
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coachvicky, i LOVED reading your post. you sound so happy. that is great!
if you don't mind my asking, did you have a full hysterectomy or an oopherectomy? Did you have any genetic markers that put you at greater risk, or is this something that the new oncologist recommends for all patients?
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has anyone in this group had TDAP reconstruction (post-lumptectomy). this was just floated to me as an option for the first time. will also post in the reconstruction group.
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Vicky...your post made my day!!! So very happy that you got your peace of mind, and that you found out that everything you have done and gone through was the best choice. I could see you smiling as you typed. I am thrilled for you.
SpecialK...you are indeed Special.
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Hi ladies,
Just introducing myself. Diagnosed in November, Stage IIB, finished 4 treatments of dose-dense AC (every 2 weeks) and just started Taxotere + Pertuzumab + Trastuzumab. I am still shocked by this diagnosis and I am a bit of a train wreck. Went for 2nd opinion today and doc said he would have done weekly Taxol rather than Taxotere. Now I am agonizing about that. Can someone elaborate on Taxol vs Taxotere effectiveness in this neoadjuvant setting for Triple Positive BC? What are the chances of complete pathological response with this regime?
Cheers to all and thanks in advance.
Laughing Gull0 -
Red ....they took everything. My GYN said if you were my wife, I would take it all. I had a robotic hysterectomy. Real easy recovery.
Vicky
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Yes Kiim ... it was wonderful and SpecialK made it so.
Vicky
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welcome LaughingGull. Sorry you must join us, but this is a wonderful group of helpful and knowledgeable women. I am not sure why the MO said that. Both courses of treatment are the standard. I know the weekly Taxol is a bit easier on some. Maybe he felt you were being aggressively treated. My oncologist gave me the choice. I only chose weekly Taxol due to the fact that I have to work full time. The other choice was TCH.
And btw, I think we are all train wrecks at various times. Sending you hugs.
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Hi Laughing Gull!
Yes, most +++ breast cancer patients who are Stage II and beyond choose from AC + Taxol + Herceptin + Perjeta OR Taxotere + Carboplatin + Herceptin + Perjeta. I don't know if your regimen is much different from the first one because you're not getting the Carboplatin. Taxol is supposed to be gentler than Taxotere, but it is associated with peripheral neuropathy (which affected me slightly). Both Taxol and Taxotere can cause gastrointestinal issues (e.g. diarrhea), and both are associated with fatigue. A very very very small number of women who have done Taxotere have suffered from permanent hair loss, so there's that.
I don't know if there are comparative effectiveness studies available because as far as I'm aware, AC + Taxotere + H + P isn't that common. However, my regimen did wipe out all of the active cancer in my breast and compromised node. Good luck!
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hi all,
ihave been on zoladex since august. my hot flushes for the past couple of days are so bad that sometimes i feel like fainting. has anyone experience that?i heard some antidepressant help with the hot flush.. i am already on antidepressant (Remerron) and about to start Arimidex ... thanks
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Hi Kae!
I'm also on Zoladex, but I've never had hot flashes that bad. The number of night sweats has increased since I started in February of 2015. I know that some women take the antidepressant Effexor to address their hot flashes. I'm on Celexa, but mostly to address the mood swings that surfaced a few weeks after I started Aromasin. I don't think Celexa has had much of an impact on the flashes. Good luck!
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thanks Elaine. will ask about Effexor...
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Red, Look under "breast reconstruction" on this site and you should find a subject on TDAP. Forgot to answer your question, I had no markers and did genetic testing. I am 64 ... I really didn't need my girl parts. Also, some women have vaginal bleeding on Arimidex. Was not going to let that happen. I wrote previously that I am too old to shop the tampax aisle at the grocery store.
HapB, post ... ancient!
LaughingGull, welcome. Keep us posted on your progress. Please watch that "shock" feeling and if you need to take something, do so. The train wreck will get back on track and moving forward. Like Kim wrote, these are normal feelings / reactions. This will be in your rear view mirror one day. What helped me was to keep a journal. I wrote on good days and not-so-good days. I also found guidance in a small book by John Piper, "Don't Waste Your Cancer."
Vicky
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Hi ladies,
Thanks Elainethere and Vickycoach for the greetings. And for the book recco. I will try to keep breathing. All in all my second opinion visit yesterday was a complete waste of time. Doctor was 2+ hours late (no apology), nobody had prepared or read my records and they lost the CDs with my scans; "call next week in case when so and so comes back from vacation she can find them". Dr lazily confirmed general approach, based on what I told him rather than what he knew about my cancer cause as I said he couldnt be bothered preparing for the appointment. Then he threw out there that he would have done Taxol rather than Taxotere but it was not clear to me why. Is this normal for second opinions? I am under the impression that since I was not headed for treatment there they could not care less.vin
Need to ask my oncologist about the carboplatin. I thought carboplatin was in my plan for the second round bc I received a letter from my insurance approving it but then I only got Herceptin + Perjeta + Taxotere. Hope it works.
LaughingGull
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Hello all,
I just finished rads and have been using pure aloe that my husband harvests from plants. It's been working pretty well though we'll see, as the SE continue for a few weeks. I am grateful to be alive but very unsure how to proceed. Will be on Arimidex starting in March. Mega anxiety about SE's and about triple positive though extremely grateful for all the targeted drug therapies.
Hugs to everyone today
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Red & Melanie, thanks so much for your kind words and advise.... I am writing everything down to discuss with nurses & doctors on Thursday.
Hi LaughingGull! Welcome... I'm new on here too. So sorry about your 2nd opinion visit... what a horrible experience! Apparently this doc forgot how to show compassion. Take one day at a time and try (it's hard!) to focus on every little positive thing you can each day. I'm about to start Herceptin + Taxol this Thursday, so we can walk this chemo journey together. If you haven't heard of this movie already you should watch it: Living Proof with Harry Connick Jr. It's all about HER2 & the doctor who invented Herceptin. Great movie.
Have a great day to all!
Laurie
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Godswithme,
Weekly Taxol was very doable. Iced my hands and feet throughout and no neuropathy! I am a runner and ran about twice a week during chemo. Kept up with strength training and walked at least 2 miles a day. I believe this really helped minimize SE’s though I did have some pretty sickly days. My biggest complaint was indigestion.
I also kept about 75% of my hair and now the bald patches are growing in. I am grateful.
Best,
Marci
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can someone recommend something for vaginal dryness? thanks
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I second Kae’s question. I know there is a thread on this site about sexuality, but many of the things listed don’t make much difference. Is there the top of the top for lubes?
Vicky, so glad you had a great meeting. I was pretty sure you had done everything you could, but it’s great to know that another specialist agrees.
We should have Perjeta in Canada for earlier stages - not good.
Welcome, new ladies. I still dance with anxiety and some grief and shock and startle easily. But yes, many days I do achieve a feeling of balance and normalcy (1 year, 7 months after dx). There is no standard timeline, but it’s sooo helpful to have others show us and assure us.
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Thanks PosseyGirl!
To you and Kae,
My Gyn recommended and my MO approved DHEA 6.5mg/ml vaginal cream. It has to be compounded.
Vicky
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coach vicky,
did you ask about nerlynx on your appointmentwith Special K’s MO?
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Kae,
I did not ask. It really won't improve my odds. My non recurrence is 94.6. I am lucky.
Vicky
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coach,
how did you come up with your non recurrence figures
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Special k you made me feel brave. I have three pictures to share. The first is at the end of chemo just before I shaved my scraggly head, the second is one year out, and the last pic is from last week.
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FINALLY - I see that someone has hot flashes like mine. It isn't just a hot, sweaty feeling. I also get out of breath, my heart pounds and I feel weak and dizzy. Sometimes close to fainting. I have to elevate my lower body and get my head lower than my heart. I know what's happening but it scares the s;:&$t out of anyone around me
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tres - oh yay! Look at you! You look pretty good in that end of chemo shot girl! Your hair looks great and so does your skin, you look healthy and happy - awesome! Love it!
Laughinggull - here is my take on the chemo regimens you have discussed. Generally, chemo for stages II and III Her2+ is either AC-TH(P)(adriamycin, cytoxan, taxol) with Herceptin/Perjeta given with the taxane - or - TCH(P) (taxotere, carboplatin) with Herceptin and Perjeta. Not all stage II/III get Perjeta, it is dependent on where they live in the world, and their individual clinical criteria. For stage I folks and some stage IIa, TH (taxol, Herceptin) is available as an option. The TAC (taxotere, adriamycin, cytoxan) regimen is not used nearly as frequently. I can probably count on one hand the number of people here on BCO I have seen use it. I assume the H and P would be given with the taxotere, and the AC done dose dense first since H/P aren’t given with the AC portion. Combining adriamycin and taxotere in the same regimen is using two very big guns, taxotere is more potent than taxol, this would be why the other oncologist mentioned using taxol instead as it is more the norm. In your shoes, I would ask your initial MO the rationale for using these two strong agents for your individual case.
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