HERCEPTIN and/or PERJETA Threads
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@olma61 That research is very interesting. After my first BC diagnosis 16 years ago, I underwent radiation treatment. Approximately 2 years later I noticed a small dark spot on the radiated side of my chest. I went to my plastic surgeon to have it removed. He wasn’t concerned about that spot but wanted to remove a mole. I insisted he remove both. The mole he wanted to remove turned out to be fine; the spot I insisted he remove was pre-pre-cancerous. (I don’t recall exactly what the term was for it). Anyway, glad I insisted he remove it. Always go with your instincts.
Hugs, Pam 💗1 -
Dear Olma, thanks for the study. If these connections are known, it really is important to look very carefully into each patient's disease path and select those who can avoid radiation. For my wife, I'd say, radiation was pretty brutal. She felt good but skin wounds were crazy. Sadly, when it is stage IV, we grab any straw in the water to be able to hold on and not drown… so, when Sandra was offered radiation, we did not think too much… Saulius
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you hit the nail on the head, Saulius. I considered myself fortunate to even be offered the chance to radiate that last lesion that remained active. Had I not done it, who knows what may have happened….we can imagine.
So I am just grateful my onc saw my back and caught this early for me. 🙏🏼
Note, I also did not have the newer forms of rads that are more targeted, I had to go with EBRT due to insurance issues - maybe there is a difference in risk with the more precise, newer techniques? Not sure if this is researched or not.
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My quarterly scan was last week, all clear! My next Signatera test is scheduled for the end of this month. Will update!
Dermatologist skin check is all clear too.
After 8 years of having my fibroid ridden uterus mentioned on scans, I have finally seen a gynecologist and waiting for my ultra sound results. Not too worried because all indications are that they are benign, just annoying. 😜
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@olma61, Great news all around!!
Clear scans are always something to celebrate—congratulations! 🎉 And it's great to hear the dermatologist check came back clear as well.Good for you for finally addressing the fibroid situation after 8 years of it showing up on scans. It sounds like you're being proactive and hopefully you'll get some answers and relief from the annoyance. Fingers crossed the ultrasound confirms what your doctors suspect.
Thanks for updating the community—these positive check-ins are encouraging for everyone here. Wishing you continued clear results on your Signatera test later this month!
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@olma61 Great to hear your scans are clear! You are my inspiration. Have a wonderful weekend!
Hugs, Pam 💗1 -
Olma, congratulations, keep marching on!:) Saulius
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Thanks, everyone! It will be super interesting to see the final results of the FREE-HER and STOP-HER2 studies in a couple of years…hopefully will bring good news and more precise treatment options for a group of us with HER2+ MBC.
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Here’s a question for anyone with HER2+ MBC who is on Herceptin and Perjeta: have any of you had to stop treatment temporarily due to a low LVEF rate? And, if so, for how many weeks? Did things go back to normal without needing to repeat this process?
I’m just curious, because my LVEF rate has been slowly declining. Not to the point where I need to stop it, but wondering what others have been through. Also, at how many months or years into treatment did this happen to you? I’d appreciate any input. That would give me a point of reference. Thanks so much everyone. Have a great weekend!
Hugs, Pam 💗0 -
Dear Pam, my wife is on HP already for 8 years (but her LVEF is still alright. Hope it stays so… Hugs, Saulius
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@bsandra Saulius, so glad to hear that your wife is so well on this treatment!
Hugs, Pam 💗
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Well, my last signatera test for 2025 is….NEGATIVE!
And all the gynecological testing shows nothing concerning, what is there is benign.
Now I can relax and enjoy my holidays. I've got no medical appts til December (😣) but one is dental and one is dermo….so not so bad. Back to oncology in January.
Hope all of you are doing well here ♥️
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@olma61 Congrats on your negative Signatera test. So happy for you! Enjoy some time away from MBC tests and appointments.
Hugs, Pam 💗1 -
Thank you so much, Pam. I'm glad for you as well ♥️
Just found out I am on every six months scanning now! Woo-hoo 😁
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here’s my Q1 2026 update:
Yesterday completed exactly one year I’ve been off Herceptin and Perjeta.
My signatera this month is negative.
No scan this quarter, next one’s April.
Hope all who read this are doing okay.1 -
@olma61 So great to hear that your Signatera test was negative again! 🎉
And congrats on your one year anniversary of no HP! Truly happy for you.
I have my quarterly PET/CT tomorrow. 🤞
Then Tuesday is my ECHO, Signatera draw and HP infusion.
I’ve been feeling really great except I have developed severe sciatica in my left leg. Had a herniated disc four years ago and had horrible sciatica on the same side. Not sure if this is a disc issue, since my back itself is feeling fine. However, could be piriformis syndrome due to the AI that causes muscle aches and tightness. Just started on a muscle relaxant a few days ago, which really hasn’t kicked in much yet, other than making me feel yucky. I do start PT next week so hopefully that will help.
Hope everyone is doing excellent! Have a great Sunday.Hugs, Pam 💗
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Just wanted to let everyone know that my PET scan last week was clean and my Signatera test was negative. Feeling great about those results.
Now working on the sciatica and muscle aches. Thinking of switching back to Anastrozole, which I was on for a year before switching to Exemestane. Anastrozole made me feel really yucky, but only mildly achy, yet also gave me severe heartburn. Switching to Exemestane was great for the first 3 months, then the aching muscles and sciatica started. For some reason, I felt fine in December, but then January ramped up to extreme sciatica and muscle aches. Still dealing with it. PT has helped minutely.
Has anyone else switched back-and-forth on AIs? I’m wondering if switching every six months might actually keep side effects at bay. Any input would be much appreciated. Have a great weekend!Hugs, Pam 💗
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@livinglifenow I am so sorry you’re experiencing pain, I hope a change in hormone therapy may do the trick.
I never took any other AI, just the anastrozole for 6 years. I went straight to Fareston because I had read good things about it and it really is treating me well. I had horrible leg cramps almost every night with anastrazole, and since going on Fareston and no HP, I am the most side effect free I’ve been since getting diagnosed with BC. Look into Fareston maybe and see if the you and your doc think it might be for you. ««I just realized I sound a little like a drug commercial - “Talk to your doctor and see if XXX might be for you”.
@bsandra Oh, you flatter me 😄but seriously I hope we do get some good information from the studies of HER2+ outcomes. The study I am on is very small but my doctor revealed to me that other day that since October 2024 only one subject on this study has had a positive Signatera and even with that, her imaging did not yet show progression. Again, it’s a tiny study but still we cling to all tidbits of good news, right? Take care and best regards to your lovely family.
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@olma61 Thank you for your concern. Not only do I have the sciatica, but also joint and muscle aches and mild fatigue that seems to be getting worse. I do believe the sciatica is due to the muscles tightening up, since it's not acting anything like the sciatica I had 4 years ago when I had a large extruded disc. That was much more painful but slowly went away after many months of exercises, etc. This time around, nothing seems to be helping.
I really am concerned that it might be the Exemestane that I am on. I don't know if going back to Anastrozole will help. I did check out Fareston on my Medicare Part D list: $631/month. A bit out of my reach. I wonder if one can get it directly from the company or other discount programs. Sounds like it works more like Tamoxifen (which I was on for 5 years the first go-round). Had some issues on Tamozifen, but nothing like this. There are days I can hardly walk.
So glad you are doing so well on your trial and no HP. That is so awesome.
Hugs, Pam 💗
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Hi everyone, I’ve been following and reading this thread for sometime. Thank you all for sharing your experiences!
@olma61 congratulations! That is amazing news!
I’ve been on Herceptin/Perjeta only since December 2023. My baseline echocardiogram in August 2023 (before starting any treatment) showed an LVEF of 63%. Since then, I’ve had MUGA scans every 3–4 months with results of 64, 60, 69, 64, and then 54 in October 2025. My most recent test, in January, was another echocardiogram, which showed an LVEF of 53%, which is still within the normal range. I don’t feel short of breath or anything that would suggest something is wrong. My MO is referring me to a cardiologist, but said that my heart looks completely normal structurally and that the only issue is the slightly lower ejection fraction. I don’t get the sense it’s cardio toxicity from the Herceptin as it didn’t happened within the first few months but it is concerning to me. Just curious if anyone else has experienced something similar? Was it a watch and see situation or did they recommend medication to help protect your heart? Thank you.
Thinking of you all.
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@harrow That is curious that your MO is sending you to a cardiologist. I also have ECHOs done every 3 months. They always report a range for the LVEF. Example: 65%-70% or 55%-60%. Never an exact number. They also fluctuate from higher to lower and back up again. Could have to do with how much exercise we’ve had, etc. Let us know if you find an answer for why your oncologist is sending you to a cardiologist. I’m curious to know why. Best of luck.
Hugs, Pam 💗
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@livinglifenow I think my MO is maybe just being cautious and proactive by referring me to a cardiologist? But I don’t know that for sure. She just said it’s still in the normal range but on the low end. All my echos and MUGAs give an exact number…
Some reading I’ve done supports what you mentioned, that it can fluctuate based on a number of factors, including exercise and hydration. I have another echo scheduled in April so I am going to hydrate like crazy in the days leading up to it. I have also started strength training 3 days a week since the last echo. Maybe that will help as well. I’m feeling very nervous about it. It just feels like one more thing…I’m feeling sorry for myself today.
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@harrow I know it’s not easy, but please try to relax about it. I often wonder how many normal people, who aren’t being checked every three months for their LVEF, would have the same numbers as we do. They’re just never being checked.
And, I agree with you that hydration can be key. I have my herceptin / perjeta infusions today. I try to drink a lot of water before they do the labs. But, not too much. Once I drank too much water and my sodium levels were low. It’s always something!It sounds like you have a great plan to keep your heart in shape. I’ll be cheering you on!
Hugs, Pam 💗0 -
Quick update on my February 17 appointment: I saw the oncology nurse and we discussed my sciatica pain and other muscle/joint pain. She switched me from cyclobenzaprine, a muscle relaxant, to a different muscle relaxant called Tizanidine. I’ve been taking that for a week now, following a week on cyclobenzaprine, along with tramadol midday for the pain; the pain is only minimally reduced.
I called today to explain this and was told it would be OK to take a two week break from exemestane to see if that relieves any of the issues. Something’s got to give. If, indeed, Exemestane is the cause, I may go on tamoxifen. (Or maybe Fareston, which we didn’t discuss at the appointment). At least that will be better for my bones and such. Will keep you all posted.
Hugs, Pam 💗
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@livinglifenow thank you for the reassuring words. Your comment about wondering how many people are walking around with a low, normal LVEF and don’t even know it really resonated with me.
I’m sorry to hear the switch to a different muscle relaxer didn’t provide more relief for you. Did you decide to take the two week break from Exemestane? Sciatica pain is very painful. I’m sorry you’re suffering with the muscle and joint pain. I hope you can find some relief. Sending positive thoughts your way!
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@harrow Thanks for your positive thoughts. I have indeed stopped the exemestane. Not feeling any different yet, but it’s only been 2 days. Hopefully I will start to feel less joint and muscle pain soon.
Today was the first time I’ve walked outside in weeks. It felt great to get some fresh air.
Keep me posted on your cardiologist visit. I am interested in hearing what he/she has to say, especially if I am ever in the same situation.
Hugs, Pam 💗0 -
Good afternoon, all! I have now been off the exemestane for six days. Feeling a gradual lessening in the amount of pain.
Additionally, I had an MRI of my lumbar spine this morning. Showed nothing of significance that would be causing these issues. The belief is that AIMSS (Aromatase Inhibitor-induced Musculatskeletal Syndrome) has caused the ache and inflammation in my sacrum, which in turn is tightening the piriformis muscle, which is pressing on the sciatic nerve. None of the muscle relaxants nor pain medications helped much. It wasn’t until I stopped my AI that the pain and sciatica symptoms are beginning to subside.
I see my MO next week so will discuss switching to Tamoxifen, since any other AI is likely to cause the same problem. Hope to continue improving.
Best to everyone!Hugs, Pam 💗
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@livinglifenow I’m glad to hear that the pain is subsiding somewhat. Hopefully it continues! And now with the MRI results, you have more information to help support the request to switch to Tamoxifen. Please keep us posted on how things are going for you.
Keeping you all in my thoughts.
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@harrow Thanks for the words of encouragement. It’s so nice having this wonderful community of likeminded people to share and support.
Hugs, Pam 💗0
