HER2 Positive-anyone 10 years out?
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Brooklyn...good luck. I had a recurrence in my chest nodes (anterior mediastinal and hilar) 9 years after my dx of Stage 4 MBC de novo. I kind of expected it.
Where is your recurrence and what kind of chemo are you on? Kadcyla worked pretty well for me.
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Hi Pipandor,
A decade ago when I was first diagnosed I got six rounds of taxol, carbo and herceptin, spaced three weeks apart, and I continued on the herceptin for a year. (They tried me on taxotere but I had a severe allergic reaction to it, so we switched to taxol). Now, I'm getting weekly low-dose taxol with herceptin every three weeks for a total of 12 taxol treatments. Then I will continue on herceptin for a year. I'm waiting on results of a suspicious lymph node biopsy. If it's positive, I will go on Perjeta as well. I should mention that the first time around I avoided radiation by getting a mastectomy. So a major protection was not in place.
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Thank you Brooklyn. My first treatment was 12 weekly taxol with herceptin followed by herceptin for a year. I was told it was easier than the 3 week regimen, and it wasn't as bad as I expected. Hope you'll find the same, and that those nasty cells will get solidly knocked back into oblivion.
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Brooklyn-I hope you get better soon. You said you had no radiation and perhaps that was the reason for recurrence. But even today if you have no lymph node involvement and you get mastectomy, docs do not recommend radiation. Given that this was my case my surgeon and radiotherapist both did not recommend radiation. However reading your post I got worried that it is not wise skip radiation.
Anyone else skipped radiationdue to negative nodes and mastery
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My RO said that from his experience, radiation should be done even if someone gets a mastectomy. Of course he is an ROso that's expected for him to push the benefits of radiation. I have a friend who has had bilateral mastectomies and is getting radiation.
I think sometimes it's just the luck of the draw. Unfortunately. I will say that I would not be surprised to get a recurrence. Even after chemo, Herceptin and radiation. :
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Thanks Margun -- it's possible. My oncologist estimates radiation would have improved my odds 20 percent, so I guess I'll never know....but this time around, with the recurrence, there's no question I'm getting radiation on my mastectomy site. I will probably ask them to remove my implant as well.
I hope I'm not scaring anyone too much with my story. My oncologist seems to think the most important reason I got a recurrence was that the surgeon left some tissue behind. Interestingly, I've always remembered feeling uncomfortable knowing that the surgeon was operating on me early in the morning after flying back from the San Antonio breast cancer conference the night before. She would have been jet lagged for sure. The surgery didn't seem to go well. She couldn't find my sentinel node, and went digging around behind my chest wall looking for it, then removed 9 healthy nodes. As a result, I got lymphedema. And now I'm hearing she left tissue behind. Sometimes a person just gets unlucky!
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Thought I would pop in here too while I am making my way around due to my own BC dx.
My mom was 67 when she was diagnosed with right IDC, ER/PR+ HER2+. I cant remember lymph nodes other than she had alot of them removed. .She did right mx, chemo, radiation, and arimedex I think for 5 years.
That was 13 years ago and she is still here with no reoccurrence. She passed the 10 year mark and is still driving me crazy!!
She has lymphedema and we have had many bouts of lymphagitis but we have a way of managing it.
I am now fighting my own battle with the triple positive but I have a great motivation sitting right by my side. If she can do it so can I.
Oh, side note...I was on this forum way back then too and it was just as big of a help then as it is today.
Power on ladies!!!
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Sending you good thoughts rlmessy! Glad your mom is right by your side driving you crazy!!! That's what mom's do.
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Hey Brooklyn - you got this....Sending lots of hugs.
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Rimessy - you are blessed to still have your mom around to give you hope and courage and of course agita. Hugs
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Hello HER2+ team
It is possible to get treated for Her2+, recover and have no recurrence over the years.
I discovered a grade 3 HER2+ lump on Halloween 2011 just over 8 years ago. No recurrence. No spread. I had the whole caboodle of treatment upfront, early (see signature) and voila - cracking on. Not easy but doable.
Hope this offers hope.
Alice
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I went for 6 years while only on Heceptin before I had a recurrence in my chest nodes. But I am NED again.
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Alicethecat2 and Denny129, this is so, so reassuring. Thank you for posting. I was 10 years out in June.
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Hi,
I'm going on 12 years out in April 2020. I was triple positive, stage 1, started H in fall of '08 following right mast. I did a year of Herceptin but developed the heart side effect in March and my treatment was paused a couple months to let my heart strengthen. My ejection fraction dropped to around 42 but great news - I got almost all my original function back in the next 7 years. I finished in the fall of 2009. I did the full five years of Tamoxifen and because I was only 42 and not fully menopausal (even though chemo - T/C - stopped my periods) we waited about two years for my estrogen to drop. I went on Arimidex and have been on it since. Because I moved to a small town I lost my amazing oncologist and am now trying to figure out what the latest guidelines are for staying on it. My oncotype was sky high so my case was a little complicated. Hope that helps!
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Denny, Cowgirl and mButterfly
Thank you so much for posting.
I do hope more ladies who are surving will join us and post from time to time.
I remember how scared I was when diagnosed and it was the positive success stories that gave me hope and kept me going.
Alice
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I love hearing positive stories. It gives me freedom from constant worry, it is awful to live always thinking that something bad is lurking around the corner.
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Alice...I have been on this forum since 2002! I will be posting this Dec 16 since it will be the beginning of my 18th year since dx!
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hello sisters- initial DX was Oct 20, 2003. 16 years out! What doesn’t kill you makes you stronger. Her 2 positive, hormone negative, stage IIA, 2 nodes positive for micro-Mets out of 12. Mastectomy followed by chemo followed by a year of Herceptin at 3 week intervals. Got herceptin early “off-study” through connection with Dr Stephen Tucker of UCLA. No recurrence. Although I did have a Meningioma partially resected earlier this year, followed by radiation in Sept. At age 67,still working full time and going strong. Rock on!
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Hi Ladies!
Good to see you Soccer mom.
I'll just add my story, just shy of 15 years NED from a Nasty stage IIIC IDC, Her2 pos , BC, 12 out of 14 nodes pos, axillary and sentinel nodes completely engulfed in tumor AND extraencapsulated, Ducts, lobes infiltrated, Pagets of Nipple, AND no clear margins after last surgery.
Livin large every day in profound gratitude
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lkc
that is so reassuring! Thank you so much for posting!
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Just accomplished my 10 years without recurrence. Am grateful and blessed for every single day. I have been able to experience the wedding of one daughter who was just 13 when I was diagnosed and have been able to watch my other daughter become a lovely young lady who was only 9 at the time. I suffer with quite a few complications from lymphedema and treatment effects, but I wake up every morning and relish in the new day. As you can see by my signature, I was in a scary place back then but I had Herceptin(2.5 years) and participated in a vaccine trial. With all the effective Her2+ medications now developed, Hope is abound!! Blessings and caring thoughts to all of us, old and new.
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So encouraging reading these posts! Thanks so much for sharing.
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I know this reply is a bit late, but I skipped rads after deciding to do bilateral dmx. My onco said there’s no need for it.
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I will be 10 yrs out this Sept. Received Herceptin every 3 weeks for life, but was just switched to Kanjinti, a biosimilar to Herceptine that is supposed to be the same as Herceptin, but 15% cheaper. Have had 2 doses now...side effects seem to be worse on Kanjinti...neuropathy has gotten worse, and the aches in my joints is almost unbearable at times. I have let my onc know that I want back on the Herceptin. Has anyone else been experiencing this? TIA
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Nedsurvivor10 - I hope things work out better for you. I have not heard anything about this med, but I am sure that someone here may know. I wonder sometimes if it makes a difference how fast they have it coming in to you. ??
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NEDSurvivor, I think Misty is on to something that would be worth trying: having the nurses slow down the IV. I know even with Herceptin, some women have reported having trouble over a thirty minute administration, but when they ask that it be slowed down (more like 90 minutes), it makes a huge difference for them. You might not get a lot of responses to the question here about whether anyone else has had your experience because it's a little off the beaten path. I'd try posting on an active thread like this: Triple Positive Thread. There are far more hormone positive ladies than there are us hormone negative ladies, so there's much more traffic.
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Hi
Anyone here who also had TCH as neo adjuvant chemo and is now NED for quite some time/years? I really need some encouragement for my mom. Thank you!0 -
I’m here to post a positive encouragement to anyone who finds herself in a bad spot. Two years ago This month I Finished radiation treatment. I just visited my oncologist and got that all clear for another 6 months.
For reference, I started neo Adjudavant treatment with TCHP in December, bilateral mastectomy in April, pcr (yeah!), then finished a year on Herceptin and Perjeta. It took the better part of a year before I felt myself again, For my hair and nails and skin to look decent.
Now days go by when I don’t think about it.
Good luck to all Of you
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I had TCPH before surgery to shrink the tumor. The tumor was completely gone before the surgery.
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How common is having joint and muscle pain when in letrozole. It’s my 9 th month on it and it seems my joint and muscle pain got worse in particular on my right hand and fingers, I guess because I am right handed? It is going to get worse or the same or better? I know a lady who is on letrozole for over 3 years. She told me she had and still has zero side effects. So I guess it is just some people will have se. Is anyone changed letrozole with something else and what was the results? I have also a friend with no agressive hormone positive her2- cancer (mine is triple positive grade 3). She was suggested to take pills but then her doc told her that it Is not absolutely necessary to take it because, in her case, it will give only 2 percent improvement. So she decided do not take it. How much improvement must be achieved so taking these pills are worthy?
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