HERCEPTIN and/or PERJETA Threads
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@harrow I have now switched over to tamoxifen. I am feeling so much better. My muscles actually feel like they are getting stronger instead of shriveling up. I have way more energy and can move normally again. What a change. So interesting that these medications affect all of us so differently.
On another positive note: Just had another Signatera test that came back negative! Looking forward to lots of golfing, camping, and eating out this year.
Hope all of you are doing well.
Hugs, Pam 💗
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@livinglifenow what a great post to read today! I’m really happy to hear that the change in meds is so positive for you. What a relief, mentally and physically, that must be!
And congratulations on the negative Signatera test! I’m sure it feels like you can breathe again, at least until the next one. That’s how I always feel anyways.
Nothing new going on with me. Waiting on the cardiologist appointment in a couple of weeks and we’ll see what they say. I have another echo shortly after that appointment so hopefully my numbers go back up or at least stay stable. Then I imagine it’ll just be a watch and see.
Hello to everyone else! Thinking of you all.
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@harrow Thanks for the encouraging response. It does feel good to “breathe” for a bit.
Hope your appointment with your cardiologist goes well and ECHO checks out OK. Just one more test we need to endure every three months. 😏Keep fighting the fight!
Hugs, Pam 💗0 -
Hello everyone! I've been on HP for 10 years now with no progression, so my onc offerered me the Guardant Reveal test, and it came back NEGATIVE! I've been getting the Phesgo shot, but I'm thinking maybe I can do just the Hylecta (Herceptin) shot. Anybody have experience with Hylecta? For those of you who dropped Perjeta, did you find yourself feeling fewer side effects?
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@dghoff Congrats on 10 years. That is awesome! I can’t comment on the Hylecta, but was wondering if you are on anything for your ER+/PR+ status—anastrozole, exemestane, tamoxifen? I don’t see anything in your signature regarding that.
Just curious because I had a lot of trouble with AIs, so recently switched to tamoxifen. Strangely, HP protocol doesn’t seem to bother me much at all.
Keep us posted on what treatment change you make. Thanks! 😊
Hugs, Pam 💗0 -
@livinglifenow I didn't realize I hadn't included my Letrazole on my signature, so I added that. Thanks for noticing! Yes, I've been an Letrazole since 2016 as well and I know it does affect me some. I don't have a terrible time with any of the drugs, but I'm not totally free of effects. I have lots of muscle cramping, and I definitely get itchy arms sometimes from the Perjeta, and neuropathy in my feet and fingers. I will definitely post once I talk to my Dr about plans for adjusting treatment. I'm still a little gobsmacked that this is even an option for me. Ten years ago, I was hoping I'd get a good 5 years, but here I am 10 years later and I'm thinking about scaling back treatment. We've come a long way!
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@dghoff Thanks for the update. Yes, it is amazing that we have so many options. Glad to see you have done so well for so long!
Hugs, Pam 💗1 -
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@livinglifenow how are you feeling these days? Still feeling better? I hope you’re continuing to improve and feel more like yourself.
@dghoff congratulations on 10 years! That is amazing! I hope I am as fortunate. Keep it going! Please let us know what you decide about treatment. I also cannot comment on just Herceptin, but I think there is someone on the de novo thread that is on it. Maybe @denny123? I can’t quite recall now.
I did see the cardiologist and he behaved like he was unsure why I was there. He said he doesn’t like to say no to oncologists, so he agreed to see me. He felt confident it was just the margin of error that comes with echos. I had another echo the following week and haven’t heard anything yet. The results are posted in my online chart but I don’t like to look myself. I prefer to wait. I feel like it’s jinxing it or something. So I will continue to wait to get the results…
I hope everyone is doing ok. Thinking of you all!
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@harrow Thanks for the update. Interesting cardiologist visit. I do think that MOs often send us off to other specialists if there is any little thing in question. I once mentioned one of my knuckles was feeling a bit stiff and swollen. So a special blood test was ordered to check for rheumatoid arthritis. Didn’t have it! 😳
Hoping your recent ECHO is fine. I, too, get a bit anxious when opening results in the portal. Sometimes I open them right away, and sometimes I wait till the day before I see my MO. That way I can upload the document to an AI platform and ask for clarification and interpretation. Most of the time I’m extremely reassured. Also, I can ask the AI platform to generate questions I might ask my MO regarding the results. It makes me feel empowered and intelligent. 😁
Wishing you the best!
Hugs, Pam 💗0 -
@denny123 Congratulations on such longevity with herceptin. I was wondering if you ever took a break and, if so, how many times and for how long? Thanks!
Pam 💗
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@livinglifenow Thanks! The only break that I took from Herceptin was when it stopped working and I presented with 2 chest nodes. So I went onto Kadcyla, which worked at first. When it got rid of the nodes, I went back on only Herceptin. But the nodes came back and that time I went on a clinical trial which did get rid of the nodes.
A Guardant 360 liquid biopsy showed that my Her2+++ had turned into Her2-. So that is why Kadcyla stopped working.
I have been on Herceptin and Xeloda ever since….for over 8 years.
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@denny123 Thanks for the information. It just seems unusual that you would be on Herceptin for HER2-. But, as I was told, all breast cancer cells have pretty much every type in them. They just find the dominant characteristics and treat for that. Who knew?
Glad you are doing so well for so long!
Hugs, Pam 💗0 -
@livinglifenow I agree and have asked about it several times. But apparently, a lot of Her2- patients are on Herceptin now.
So…if it isn't broken….
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Hi, all just checking in with an update - CT scan in March showed I’m still NED, Signatera in April still negative. In August, it will be 9 years living with HER2+ MBC. It’s now 18 months I’ve been on Fareston anti-estrogen therapy only.
@dghoff Great news!!! I had gone from IV H&P to Hylecta before PHESGO came out, just so I could stop getting IVs. I was fine, and still had NED scans, but I did not notice any reduction in side effects. Herceptin was still making me slightly itchy here and there, and intermittent slight diarrhea was still a thing.
@harrow I don’t have any experience with my LVEF going low, but there certainly are fluctuations in those numbers.
I hope everyone stays well and treatment keeps treating us all kindly.4
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