TRIPLE POSITIVE GROUP
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@fujijinxi I was 44 at diagnosis and Stage 2. My Oncologist didn't think I needed Nerlynx especially after Kadcyla because there's no study on Nerlynx with Kadcyla only Herceptin. I told him I wanted to try it and, here I am 1 year later and all done.
I had a very easy time on Nerlynx, a few rough moments but, nothing like TCHP. I
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It's wonderful to see so many new therapies! 10 years ago when I was going through treatment, I was on the Affinity study for Perjeta and they still won't tell me if I received it or the placebo with my Herceptin. I don't think going through this gets easier BUT it's sooo wonderful you have that many more tools available to ensure you will keep this +++ at bay.
However, I am wondering if any other longtimers out are taking any additional preventive treatments apart from the hormonal therapy. Are there any protocols for taking one of these drugs like Nerlynx years after active treatment ended? I am scheduled to end my hormonal therapy next February - it will have been about 11 years on hormonal therapy (with a 6 month break between tamoxifen and arimidex during year 9.). I'm hoping I will really get to end the hormonal therapy next year - it hasn't been bad and i can't tell what's age and what's the drug but I am counting the months. Still I'm wondering if there's something else I should do.
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momwriter, I’m on my 6th year of anastrozole and have the same questions that you do. I see my oncologists next week and will post back if I learn anything.
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Yay, I've got osteoporosis at 35.
Had my first DEXA scan today after a year on OS/AI and just saw the results in the portal. I wish I was surprised. I'm not at all. I am beating myself up, because I know I did this to myself by being totally careless with bone health activities. I've always been very thin (not anorexic, but maybe some disordered eating) and spent my 20s eating junk and caffeine and being sedentary. I love soda. I was going to do better "soon" because I had a long time until menopause. Then came BC and that clock suddenly stopped. And here we are. I'm also highly annoyed with myself for not pushing harder for a baseline DEXA months ago but I was procrastinating confirmation of what I already suspected.
My MO is going to be surprised and concerned and probably send me off to endocrinology or something. I think she thought I was being overanxious or something when she gave me the referral, so I told you so? Coming off OS/AI scares me more than osteoporosis so I'm hoping there's something else we can do. She mentioned Zometa.
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gamzu,
OS + AI gave me osteoporosis, too, at age 49. At first, my MO had me on a bisphosphonate (Fosamax) but once we got the insurance figured out, I've been on Prolia. So far, I have "graduated" from osteoporosis to osteopenia, which is good news. Looking forward to getting a dexa scan this Fall to see whether I've made more progress…
Your MO will prescribe SOMETHING. Hope it's tolerated well by you and does the trick!
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Suburbs,
I hope you have a good visit with your MO and I look forward to hearing what she has to say.
Gam and Elaine, I'm sorry about the osteoporosis- but I'm glad to hear there can be a reversal. .I still have to get a baseline but you make me think I should.
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Hi - just getting back on here and glad to find this group again. Thought I might be able to move through the aftermath of breast cancer solo but finding out I miss the support of groups like this. Had a bit of a scare and needed to get checked out today, all was well but it just brought home that it is better to find a tribe than to walk alone. Looking forward to getting reconnected!
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Hello.
It has been a while since I posted.
I am starting year seven of Aromasin. I finished five years of Prolia in July 2022.
My bone density was good. In March, I had an L1 compression fracture. I rested and wore a back brace. I now have 2 more fractures.
Has anyone had Vertebroplasty (cement injected into a fracture)? If so, were you pleased with the results?
Thanks, CoachVicky
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hi Momwriter, so glad to meet you. my Dx is very similar to yours. can you share why you do Axillary lymph node dissection on right side?
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Turns out one way to get MO's attention is to message the office through the portal asking about my DEXA scan with a mild accusation that I don't feel like they are always looking at results from other doctors in a timely manner, especially now that I'm through chemo. The phone rang during lunch and my brain processed hearing, "This is Dr. MO's office/NP," and took a few seconds to catch on that this wasn't what was said, it was Dr. MO herself on the other end.
Her recommendation is to switch from OS + AI to OS + tamoxifen. The other option is that we stick on OS + AI and add Zometa, which was my instinctive preference. Essentially, she thinks my recurrence risk is low enough that it's preferable to go to the slightly less effective tamoxifen to try to recover some bone density because of my age. Also because most of her patients apparently don't like Zometa. But then she also said my priorities and fears seem different, and that Zometa is shown to lower risk of bone mets, and what do I want to do? We decided to stay the course for now, discuss it further at my appointment in July, and start Zometa that day if I still feel the same way. If it sucks horribly or I change my mind, we'll switch to tamoxifen. Either way, rescan in a year. In the meantime, I need to try the diet/exercise/calcium/vitamin D routine. She offered to start Zometa sooner, but does not feel the situation is urgent or that I'm at severe risk of fractures right now, and I want more time to think and research. Obviously we need to do something about it, but it's nowhere near as time-sensitive as BC.
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HI Fulijinxi,
Oops- it was on my left side- I never had one on my right- I'll check my profile! I had the ALND because they found those 3 micromets during the sentinel node biopsy. If it had been two, I probably wouldn't have had it- just radiation. It was considered a "gray" area, meaning it wasn't clear what to do. And remember this was in 2012. I did not want that surgery, but I wanted to get rid of the cancer and mine was very aggressive- not just the her2, but the whole tumor was a bunch of nastiness (micropappilary, mucinous, LVI) j),. They did the ALND surgery and didn't find anything else. I was relieved of course, but a little regretful for having had the surgery but it wasn't really a choice. . I only had a handful of lymph nodes, ,maybe 7 total, it turns out- weird. Because they didn't find anything and removed the axilla, radiation in the axilla was also gray area and I chose not to.
I can't see your diagnosis- so I'm not sure what your situation is.
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Do your remember what's your er and pr %? My are
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Mine PR ER were very high- like 95 or 99. I don't have the values in front of me.
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Hi All, im having to make some difficult decisions that im struggling to make.
I had residual disease and positive nodes after neoadjuvant tchp. Eeeek!!
I've been offered Kadcyla... or a possible place in a trial looking at Enhertu v Kadcyla for high risk residual disease. Have any of you considered this trial?? Or been in a similar position.
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innedofhope,
My next door neighbor had her HER2+ BC come back and she did Kadcyla. But, after Kadcyla, her cancer has come back in her lungs, and she has tried Enhertu. In her experience, Kadcyla was much more tolerable than Enhertu. In fact, she had to stop the Enhertu because she could barely function while she was on it. (She has pre-existing heart issues — long story.)
Personally, I would save Enhertu for later — it's got far more side effects than Kadcyla. Good luck!
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Innedofhope - From my Triple Positive Facebook group, it seems that Enhertu has more side effects but, it might also be more effective, not sure guess that's the point of the trial.
I did 14 cycles of Kadcyla and it was pretty easy on me but, I do know that others struggled. The Kadcyla page here isn't very active but the Kadcyla Facebook group has lots of post and there might even be people in this trial.
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I just had Kadcyla infusion #12 today. My biggest side effect is constipation, but it's mild enough that stool softeners do the trick. I have some mild nausea and fatigue usually days 4-6, but again it's not too bad. I had THP and did not get pCR. When I started Kadcyla last October, Enhertu was still strictly for Stage IV. I know it's moving into the early stage space, but it wasn't an option for me. Kadcyla is a very tolerable drug.
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Thank you all for your experiences. Im finding the decision so hard. I have a 1 and 3 year old. So I need to be able to function to look after them for the 14 sessions, but I also need to try and ensure I make the right decision to give my best chance of being here as long as possible! I was stage 3A with lymphnodes and breast with residual disease and im struggling to make such a big decision when im feeling so stressed. It doesnt seem there are many out there with lots of residual after neoadjuvant
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Hi all, thought this Research News we just posted might be of interest to you:
May 18, 2023
Chemotherapy — instead of hormonal therapy — plus two anti-HER2 medicines before surgery offered better pCR rates. Read more…
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Hello all, it is great to see familiar names (Hi Coach!) and this new format. I’m still chugging away with the Anastozole at five years out. My bones are fragile with another Dexa scan next week, hopefully won’t need another round of Zometa.
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My Oncologist wants me to switch to AI in October, I'm kind of dreading it.
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Had my first Zometa on Tuesday, and the flu-like symptoms were as advertised for about 3 days. My stomach still isn't completely happy, But it could also have been worse, and apparently subsequent infusions will be better.
I've also started noticing that my monthly Zoladex shots seem to coincide with a bunch of little red dots under the skin appearing down both legs immediately after, and some easy bruising. They fade by the time of the next shot though are sometimes provoked again by heat. I had noticed these incidentally awhile ago but thought I was imagining things, but it's gotten more noticeable and I'm finally realizing the timing. Has anyone else had this? Google is failing me. It looks like maybe petechiae, but this doesn't seem to be a known side effect. They aren't bothering me but I guess I'll send a message to the MO as "wait and see" has not turned out well one single time for me on any skin-related thing in the last 2 years.
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Hi triple positive friends, question for those who were thrown into menopause by chemo and later went on tamoxifin: what were your experiences with the SEs? I know every body is different so I'll take that into consideration. Were the SE from starting tamoxifin that noticable or had you already had them from being thrown into menopause? I am "hoping" I'm already experiencing the worst of the possible SEs since chemo sent me into menopause: hot flashes, aches, moodiness.
I start tamoxifin this month and am anxious about dealing with more extreme SE than I already have from chemo menopause and the continued HP. I have enrolled in a fitness program that starts next month for cancer survivors since I've read exercise helps with the SEs. Thanks for any experience you have to share!
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I don't really get moody with menopause/Tamoxifen no joint pain either. Mostly it's occasional hot flashes. I've been on Tamoxifen for 3 years now, my Oncologist wants to move me to an AI in October and I'm dreading it.
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Hi Greenbean,
I was 47 at dx and went into menopause from the chemo. I started tamoxifen after chemo and radiation. I didn't feel many side effects from tamoxifen and it was hard to tell what was tamoxifen and what was the menopause. I was on it 8 years and only towards the end in the last year did I feel weird symptoms like some type of tingling. But mostly during the time my main symptoms were occasional hot flashes (that for me were actually very dry and were often caused by hot environments) and secondly muscle cramps which were prevented by taking magnesium supplements.
I took a 6 month break after 8 years then switched to arimadex which I was petrified about. But actually it has not been bad for the 1.5 years I've been on it.. I do need a dexa- but I find that when I do regular exercise including yoga I feel good. I've had a couple of aches from running but it seems non-cancer friends get the same thing. The plan is for me to stop after 2 years, so soon, but we will see what the MO says at the next appointment. I'd like to stop but on the other hand, it is nice to feel I'm doing something to protect myself.
Good luck!
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Hello All - hope we’re all doing well! Just a question. Anyone here deal with LVEF decline while on Herceptin? Mine have all been 65-70% at every echo until July’s which was 60%, taken on a different machine that was apparently more advanced. Oncology team aren’t concerned but they want the results of the next one before giving me my next round. I have 5 left. Is it possible that something else could have affected that lower result?
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I was told time of day, machine. Technician even the person reading it could all impact the reading.
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Thanks morrigan2575. Makes me feel better. I didn't know if LVEF was something that could fluctuate in a similar way to blood pressure, though it makes sense.
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I couldn't find anything about my breast mri question in a quick search so I thought I would try here in triple positive group. I was diagnose triple positive in 2017 and after treatment I did the usual ultrasound/mamo and breast mri rotation every 6 months. Here it is 2024 and no one is really giving me any info on when to stop receiving these breast mri's. I just had an appt with my oncologist and she said talk to surgeon, so I have an appt. set up. I can't find anygthing online - there doesn't seem to be any studies on how long to get mri's after treatment? Just wondering if anyone else here is still getting them? I don't mind getting them, I like the comfort of the results but I am worried about so much contrast in my system.
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