TRIPLE POSITIVE GROUP
Comments
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TTfan, keep me posted - I hope it works for you
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Yay Special K, hoping all continues to go well!
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Today I am cancer free for 4 years !!!
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ang7894
Yippee! What a nice way to start this day! Keep em coming...
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With all the discussions we've had regarding hormonal therapies, i don't think we've ever asked this question.
Is there anyone in this forum or known to members of this forum who didn't have any serious side effects from their anti estrogen therapies? Anyone sail through the 5/10 years?
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TTfan I still have some (left foot) but it did get better after 4 years! my left heel used to be numb all the time. Now it only happens a bit in certain weather changes. Most of the time I never notice. I was told after 2 years if it didn't get better it wouldn't but mine did. Later my NP confirmed it can happen but she didn't want to get my hopes up.
SpecialK I can't believe you are still going through this. Really hope this is the final stretch for you.
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Sammy3,
I am responding to,your older post about chemo recipes for triple positive. I had a large tumor, was grade 3 but stage 2A like you. I only received Taxotere with HP. Often worried as I found so few like me, but surgeon and MO agreed this was good for me. Hope so
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SpecialK,
Glad surgery went well. Keep us posted
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I am doing well, just trying to stay quiet and hope that my drains are at 30ml on Monday, so I can lose them! I don't have much pain, not enough to take any meds. We are all cautiously optimistic that this can work - it is my last try.
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SpecialK, you are such an inspiration to so many out here! Praying your drains come out and you are able to breathe deep and know that you are loved and cared for!
Warrior On!
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jersey - thanks! I am doing well!
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My final round of chemo is 12/28. Can I skip the neulasta or will the doc really push to have it still?
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Yay, SpecialK!!
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twiggy - I would imagine you could skip the Neulasta if your WBC are looking decent. I have seen some MOs elect not to administer the last injection if the counts indicate it can be skipped - to minimize the SE
Kate - thanks
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Congrat Special K!! Wow, I don't feel so bad that I had to have 3 different implant surgeries. My final ones still shifted, but since the implants are round it is not as noticeable..... My nipple reconstruction worked....apparently they fail more often than succeed...and have to be redone. Next up, nipple tattoo's...scheduled for Feb.
I truly hope the rest of your reconstruction goes smoothly!!!
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Hey July 2014 chemo board buddy!
Wow! Three different implant surgeries -- OY. But, you're right -- Special K's recon has truly been a marathon not a sprint. Hope it looks awesome, Special K, when it's finished.
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Twiggy I don't believe I got a nuelasta after my last chemo. Wish I had. Got serious case of shingles 2-3 months after my last chemo.
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It probably won't look awesome, but I appreciate the thought! So much has happened to the left side it is unlikely to look good, but anything is an improvement on having nothing there aall.
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Oh geez - need advice. I started chemo last week, strictly due to my her2+ status. Then today in the mail, my original oncology office (I switched) sent me a paper copy of my oncotype results. OMG it says I am Her2 -. My oncotype result is 13. ER score is 9.8 positive. PR score is 8.4 positive, and Her2 score is 10.3 negative. What on earth do I do now?!?! I really don't want to keep doing chemo if I don't have to! My Her2 score was originally done by IHC and was equivovcal (2+). Then the FISH test they said was positive (2.0). What do I do? I am calling the doctor's offices in the morning (new and old) as it is 5p here and basically phone line is answered until 4:30 (of course)!
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Sammy When I was getting my port removed in pre-op that asked me about my hypertension! What I don't have hypertension. There was a stress test in my chart that I never did. Ended up it was an 80+ YO man with the same last name as mine!
If FISH test says you are positive you are positive. Sounds like there is some kind of mess up. You want to be sure. Yes call both offices. I would be pissed. Even if you aren't HER2- it sounds like like someone is mixing up your results with someone else's.0 -
Sammy - I agree with Lago - you need to be sure nothing was mixed up, but if the results are all really yours, FISH trumps the initial test. It is SO frustrating when they do this - convey confusing info when you can't contact anyone to clarify. We have enough real stuff to worry about without having to stress over poor information!
Lago - I am encouraged about your eventual improvement in neuropathy!!! I know there are no guarantees, but it helps to know it did happen to someone! Thanks for sharing.
Ang - yayyy! Love the survivor stories!
Re people with no AI side effects - there are actually quite a few. Sula on this thread has had none so far, at least as of last time I talked with her. There is a thread for older women I looked at, and there were many on AIs with no issues. I'm guessing those of us who were pre-menopausal or on HRT at diagnosis and thus went from 60 mph to zero abruptly have more trouble.
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I'm premenopausal and take Zoladex to suppress ovulation. I haven't really had a difficult time with Aromasin. It made me moody, but Celexa took care of that. In a few years, though, who knows?
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TTfan I was surprised too. As I'm sitting keystroking this message I realize that I currently don't feel any neuropathy in my heel. Granted there are times when I get a little discomfort due to weather but right now it's 100% fine.
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Hi Sammy3. I was originally dx as HER2- after the original biopsy. Then a couple of weeks later after they had done the pathology on the full tumour following my Mastectomy the HER2 result was changed to positive. I asked the surgeon/onc how this could be.
My Onc said that if the first result is equivovcal then they sometimes re-test (as in my case). She also said I was lucky they did re-test because they don't always bother. Another friend of mine was HER2+ in one lump and negative in the lump nearby. Not sure how they discovered yours or whether you had more than one biopsy done. But if the HER2+ is the correct result you really don't want to be giving up the Herceptin.
Double check with your oncologist to find out why the difference in results and where the second results came from.
Sorry this post doesn't really help you much. But just trying to let you know that changes in pathology results isn't uncommon. Another change that I noticed in my 2nd pathology was that originally I was diagnosed with lobular cancer that was then changed to ductal.
But please ask them why. Medical and clerical mistakes happen and you need to know what you are dealing with.
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TTfan,
Yep still doing fine on the arimidex. My docs think because I was thrown into chemopause 25 years ago back in my 30's nothing much would change and so nothing has....so far.
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I finished Taxol last January and herceptin/perjeta in October. I can't feel the bottoms of my feet and have numbness in my fingertips. I keep hoping it will improve but so far nothing. I tried alpha lipoic acid, magnesium, L-Glutamate but no changes. Right now I'm facing a hip replacement in mid February so my focus is there but sure hope the neuropaty will eventually improve along with the pains and tightness in my poor radiated, lumpectomy, axillary lymph node dissectioned breast. Just grateful that at age 72, I made it through treatment. Love, Jean
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Thanks for the replies about my Her2 status. I don't know - still waiting to call. However, basically I have had 3 tests on it - 3 different results (IHC = equivocal, Fish = positive, oncotype = negative). I am not convinced you guys. I have honestly had this gut feeling that I am not her2 positive. I will let you know what I find out.
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Hi everyone! I don't post much here...mostly just lurk and post a bit on the Starting Chemo in October 2015 board...but I thought this info below was worth posting.
I just met with my MO (waiting for my 4th of 6 chemo treatments right now), and based on new research that has come out about the effectiveness of carboplatin on HER2+ cancers, she is stopping my carboplatin effective today for my last 3 treatments. It is the likely cause of my tinnitus and hearing loss (minimal but concerning). She said that given carboplatin's high toxicity and side effects and the new research, they are recommending dropping carboplatin for HER2+ patients. For all of you HER2+ ladies out there taking carboplatin, it might be worth a conversation with your MO.
Just thought that might be interest to some of you. Good luck to everyone!
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My friend kayb has a post with a survey gathering data, approved by the mods. Here it is:
https://community.breastcancer.org/forum/73/topics/838506?page=1#post_4581053
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DurhamGirl..
Thanks for sharing. Very interesting.Change comes very slowly in medicine....
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