TRIPLE POSITIVE GROUP
Comments
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Annemarie, good luck on your tests today. I'll keep my fingers crossed for b9 results. The worst part was waiting for all the results of the tests. I felt much better when I received my treatment plan and got started.
Linda, I'm jealous. You're halfway through. I still have 3 more Taxols to go. Then it's off to every three weeks for the Herceptin.
I'm now starting to feel a little neuropathy in my fingers and toes. No tingling but they feel a little numb sometimes. Actually, my fingers don't really feel numb but they are really really dry. The skin on both corners (top of nail) of my nails crack and then hurt.
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hi ladies
I will be going to my 5th infusion of TCHP this Wednesday and just had my pre chemo visit with my MO. My tumor has shrunk but has not disappeared based on exam (no scans done). My MO asked me to see my BS and that he wanted to see his thoughts on possibly just doing the 5 infusions and not complete the 6th. My appointment with the BS is not until the 18th so now I have two weeks of anxiously waiting.
I did tell my MO I thought the main reason of my chemo was to get the stray cells and doing it neo had the additional benefit of reducing the tumor and possibly allowing me to get a lumpectomy. Meaning I thought you had to do the six infusions as standard of care is that you need six to get rid of the stray cells (while of course there is no guarantee). He said I was doing well and wanted to get the BS opinion (they know each other, same hospital).
Anyway, have any of you personally experienced this or heard of it? He said I would most likely end up getting the sixth, and while I would love to end it at five I feel like I may always be scared that I did not get the standard dose as everyone else. What do you think? Thanks!
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windgirl maybe because they have been having such success with Perjeta that maybe 5 is OK. There are plenty that had to stop early. Many times it's 6 and not 5 because the study was 6 tx. They may not know if 5 is enough. Hey 5 might be enough for you…and there is also a possibility that you didn't have any strays. It's not a perfect science.
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Windgirl, I am close in treatment to you. I just had my 5th round last Thursday. I personally want all of my rounds because I want the Perjeta that I won't get after the 6th round. I too have some neuropathy like you so they lowered my Taxotere dose for round 5. I work with my hands, and the MO didn't want me to have lasting effects that would limit by ability to work. My tumor is 8.4 cm (on my left) on the MRI and US (not sure how much is DCIS and how much is invasive until surgery), but I am having a mastectomy even if the tumor would be small enough for a lumpectomy. I am meeting with the radiation oncologist to discuss radiation and reconstruction options and how they could effect each other. I already have the PS's opinion, but I want the the radiation oncologists opinion too before I commit to my surgery.
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windgirl - I was scheduled for 4 TCH and just before the 4th my onco decided that I should do 6 rounds. When I went for the 5th round, I saw a different much younger doctor who determined that it made no sense for me to have 2 more infusions for .6 cm tumors, no node involvement, my labs were starting to go downhill, my eyes were streaming (and so was the other end), my feet were burned......
At this point I'm midway through 7 weeks of full breast rads and wondering what my onco is going to say when I see him in December.
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Great news today ladies, all lumps tested were B9
Joy Joy thank you all for the well wishes, it makes me feel so positive and supported, exactly what I needed to help get me through this. I love they do the tests and have the results within an hour. Echo Cardiogram good, tomorrow EKG, Wednesday get the treatment regiment and hopefully I can get ported up on Thursday and on my way to wellness Friday. I'm 4 weeks out from dbl mast, healed up fast, vitamin E oil helped!0 -
All B9, thank you for the well wishes. Hoping to get ported up Thursday and start treatment Friday
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Happy dance for you Annemarie!
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Annmarie, fantastic news!
Linda, congrats on being halfway done with herceptin, how are you feeling?
lago, everyone else, hello!
And, FluffQ- thanks for that amazing DIEP link, that was so cool! I watched most, definately(how the f DO you spell that word!!!) had to avert my eyes several times, and--- the freakiest thing to me was when, before the finished her up, it showed the peeled back skin with the belly button floating down in there, standing up, surrounded by tissue and muscle...EWWWW!!! Good luck to meeting Pbrain's oncologist.
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Yippee AnneMarie!
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thank you so much for the responses. My tumor was 3.7 cm, and while the scans did not show tumor in lymph nodes, I did not have an snl prior to chemo. So in short I would imagine I should be getting the scheduled six. If the surgeon and MO agree the 5 (very low possibility) I would probably get a second MO opinion.
Also I think seeing the ultimate response is important for prognosis, although I've read today that getting a Pcr is not as relevant for triple positives in terms of long term survival compared to more aggressive cancers such as TN.
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B9 Yay Annmarie
Hi Kathec
Windgirl I had chemo after surgery. We'll never know if I got PRC or not. I'm over 4 years out. We have hormone therapy after chemo so that's probably why it isn't such a good predictor for us.
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Good news, Anne Marie!
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Great news Annemarie - so happy for you!!
Thanks Kathec - I am feeling pretty good. Just mild SE's from the herceptin - worst being the runny nose. My liver enzymes still high but I don't have any symptoms associated with that and not jaundice at all, and all tests for mets have been negative - so no one else seems worried about this. I am going to try to get herceptin without the preservative and see if that makes a difference.
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Annemarie, that's great news!
Good luck with everything during the week :-)
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Clear new evidence for mind- body connection breast cancer. Namaste:)
For the first time, researchers have shown that practising mindfulness meditation or being involved in a support group has a positive physical impact at the cellular level in breast cancer survivors.
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Windgirl,
While pCR is considered a great prognostic factor for everyone, it is indeed considered a more -- "important" if you will -- indicator for Her2+/HR- and Triple negative. From what I've researched, this is primarily because hormone positive women who do not achieve a pCR still have years of adjuvant therapy in hormone blockers and suppressors. This additional therapy is really what keeps the recurrence rates low for all HR+. Furthermore, in terms of being triple positive, feel good knowing have the very most treatment options available to you, including all the anti-Her2 agents and the hormone therapies. So again, achieving a pCR is great and IS a good prognostic indicator for triple positive. However, what is likely more important down the pipeline is your use of hormone therapy.
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hi ben50,
Thanks, what you wrote is consistent with what I read online as well and it makes sense. I hope your wife is doing well. I had read your posts about her chemo progress when I started my chemo and they have helped me. I, just like her got lines on my nails for each chemo I got (that appeared after the second infusion), and think of her every time I see them
hope her nails stayed on. I've also been very impressed with your interest in this. Take care.0 -
I started hormone therapy today, anastrozole, with mixed emotion. Happy to be at the next phase of treatment but worried about SEs. Guess time will tell how well I'll tolerate it. Any advice appreciated.
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Debiann....look up the Arimidex thread. It's a good one. I've been on it for six months.
Ben...I might have misread your post, but if your are estrogen hormone positive, I think you generally get estrogen suppressors whether you have a PCR or not. My tumor was fully removed upon biopsy, with close, clear margins. If I had done nothing else, they still would have had me on tamoxifen or arimidex to block the estrogen levels. Sorry if I read it wrong, I was having a hard time getting my iPad to back up.
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I had a discussion with my MO today about hormone therapy. She wants me to start the beginning of December. First, she is going to do the adjuvant online to determine my exact recurrence rate. My last MO did not do that. He just said it was low. She wants me to take Tamoxifen. One, because I'm premenopausal and she's concerned about bone and heart issues at my age. Second, she said she felt that all the chemo I did (ACTPH) was the biggest factor for me. If I hadn't done chemo, she would have recommended an AI because the recurrence rate was slightly lower than Tamoxifen. Her plan would be to check my hormone levels every 6 months to determine when I hit menopause and then switch. She also didn't recommend OS. She said there aren't any studies (until Dec) that show OS is better. She thinks chemo is doing that job right now in keeping my estrogen levels down. If the SOFT and TEXT trials come out saying OS is recommended then we would do that. Basically the conversation ended with us waiting to see what adjuvant came up with. Of course the results won't include the Perjeta because it's too new. I told her I was strongly leaning towards OS plus AI because of recurrence rates. I'm so confused! I feel like this decision is so much harder than my surgery and chemo decisions.
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Mommato3 I was stage IIB also no nodes (but a little larger tumor than yours) and my MO says my risk of recurrence is high. I was perimeno and 49 at diagnosis. You want this this ESD.
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Hey Debiann - I am on arimidex and have been since about the middle of September and so far I haven't noticed any side effects. My hot flashes haven't gone away LOL - but I don't think they have increased. I have aches and pains but had those before the pill also - so far so good - I know that might change but maybe we will be lucky and not really have SE's from it. Here is the thread for it if you want to get some advice from others taking this med.
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Ashla,
Thanks for posting that link! The concept of mindfulness meditation and staying in the present has been the single most effective practice in helping me move on from this BC diagnosis.
I find it very helpful and healing listening to YouTube videos of Thich Nhat Hahn and would love to someday visit Plum Village or Deerpark.
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I am new to this so really don't know where to start. Had my lumpectomy and sentinel node biopsy a week ago and will meet with BS and MO next week for my results and treatment plan.
I am wondering what made you ladies decide to have mastectomy verses lumpectomy/radiation.
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Ella117
I am so pleased that the article was helpful. I strongly believe in the physical and psychological benefits of meditation and yoga but the cellular level is a surprise .
Am relatively new to both having started during treatment but believe they have been invaluable in my recovery.
Struggle mightily with mindfulness but will continue . Live very near Blue Cliff monastery:)
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Starting to see some long term ( easy to forget that. Herceptin has only been widely available for 8 years) results of Herceptin and it's looking really good in this article!!!!
Trastuzumab shows benefit years after treatment for HER2+ breast cancer
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Tig Notaro .... Laugh or cry video ... I hope no one is offended...Please tell me and I will remove it. I believe laughter in the face if adversity is good medicine:)
http://m.youtube.com/watch?v=SW3i9cU96OU0 -
Ashla - I LOVE it!!!
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Dang it is gone
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