HERCEPTIN and/or PERJETA Threads
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Andi , hugs.
It was sad to hear about your progression and is sad to hear the next line failed miserably. Looks like present medication is working- wishing for it to be so and for a long time and for a new normal being perceived similar to the old one when you were on here. Of course you miss this thread , it represented normal life after MBC diagnosis. After being thrown in the roaring cold deadly sea by this diagnosis some of us happen to find ourselves in a cosy warm harbour of an easy treatment stable for a while and have normal life. Being torn from there and thrown back to state death in the face again would hurt to day the least .. Thank you for coming back and updating, I miss your reports on your normal good life on H&P and I wish and hope you will find something similar. Hugs again.
I think mara stayed on H&P with brain metastasis as well.
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Yes, Andi,we are rooting for you! Glad you seem to be responding to the new regimen and hope the SEs do in fact “get easier” and you can feel more comfortable.
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ladies, can you tell me from your experience when is diarrhoea at it's worse in the cycle - at the end of week 2 I got a bad one for a few days and I do not know whether to attribute it to h&p or some other reason. Have been on it for a year and a half , was not an issue mostly.
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Hi another one
I have been on H&P for 11 months and I get the odd random bout. It doesn’t seem to have any particular timing. I must admit this last week I have felt like I am starting to develop indigestion. Like the whole GI tract is not happy. Otherwise the side effects are quite minimal for me, so far.
Good luck to you.
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thank you helenlouise
Yes exactly as you are saying- an odd random bout. I guess I know my answer now on the origins of it.
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yes I would say my problems with the big D have been pretty random. Some terrible bouts and then normal and sometimes constipated. I believe my last bad bout was December 2019, but I had been out of the country too so strange food and water may have contributed to being sick when I got home.
In the beginning of treatment I would feel the gastric effects almost immediately after treatment.
Lately I am on a pretty even keel. Thankfully
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I am having the Herceptin/Perjeta infusions regularly now and the oncologist said it will continue indefinitely for as long as it works. For those of you experiencing the big “D", having chia a couple times throughout the day and before I go to bed has been helpful for me. It's a miserable side effect. I hope those of you experiencing it get relief from it soon.
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Cross posting with COVID vaccine thread.
I just had the Astra Zeneca jab (in Sydney, Australia) and the dr told me it wouldn't work as well for me because I'm on immunotherapy (Herceptin Perjeta). I was surprised by this but went ahead anyway. Has anyone else on this been told that? Or that you had to get it at a certain time in the 3 weekly cycle?0 -
You know, I wondered about this myself. But I was worried it might work the other way, ie, the vax would interfere with Herceptin’s action. I asked my MO and she said no problem, get the vaccine. I’m signed up to get Moderna next week. I still have qualms about it, though
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Just got message back from breast care nurse, I have to skip the next infusion of Herceptin Perjeta, no explanation given.Glad I asked, I was due on Thursday.
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Dear BellaTassie15, I don't know where MOs get that info from but when you are on HP, you are not imuno-compromised (low WBS) in most cases, SO VACCINES ARE EFFECTIVE IN YOU! With chemo that would be a different thing, although still not well known. Saulius
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I know some of you have been getting Hylecta, the Herceptin injection, but I'm wondering if anyone is getting Phesgo, the injectable form of Herceptin and Perjeta. My oncology nurse asked me if it was something I might be interested in as they have another patient who was just prescribed it. It seems like it might be nice to save the time, but I'm wondering how stinging the shot is since it takes 5 minutes to administer. Also wondering what, if any, other side effects you might experience. I'm going to talk to my oncologist about it, but wondered if anybody else has experience with it. I hate shots, but I have to get an IV every time I go for infusion so it's not like I'm not already getting poked (I don't have a port anymore).
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My onc tried to get me Phesgo but it didn’t get approved. I do get Hylecta and that also gets injected slowly. I don’t find it too painful, no burning, just the needle itself hurts a little.
It does seem like some minor side effects came back when I switched. Watery eyes, blood inside my nose. Nothing major, though.
Still getting Perjeta infusions plus the Hylecta
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Thanks! I'll have to see what insurance will do. If I could only get one as a shot, I'm thinking I'd just as soon stay with the IV form for both since I'd have to get the IV anyway, and it would only take an extra 25 minutes.
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DGHoff- have you made the switch to Phesgo? My oncologist just asked me today if I would like to switch and I’ve decided to give it a try provided insurance approves it. Infusion today, so not sure if it will be approved in 3 weeks for my next scheduled treatment I’ll definitely update with my experience when I get it.
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I just got word that I’ll be starting PHESGO next appointment and after 3 years and 7 months of infusions, I just feel a little bit more free!
Next on my wishlist - get the FDA to allow patients to self administer at home and be able to visit the oncologist less often. Or convincing some drug company to get these drugs into an oral form.
But for now - I will celebrate leaving the IV pole behind with much less time sitting in the doctors office
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Olma, this is great! Also the "NED" news from another thread. Please, update us constantly on your Phesgo experience. I have a feeling it is also coming to LT soon... Saulius
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as a canadian these drugs are not approved yet (I am wishing soon) so I am still stuck on the IV pole 3.5 years now. I hit my 4th year this Nov and NEAD. I wish we can get the shot here in canada so I can sign up and leave the port and Iv's behind me ( except for Zometa
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Wife is still on THP (five rounds completed). It seems bone mets are progressing and potential lung nodules found at month 2 scans. Does anyone know if THP / HP not effective for bone mets.
She had radiation for bone mets. We are due for another set of scans in early July.
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hi there, sorry you’ve had to join us but welcome. Bone mets can respond to THP treatment, I have bone mets myself and they did respond.
But, we are all different.
Two months is not that long on treatment. If your wife’s oncologist is not eventually seeing a response with THP, they will try something else. Next drug for HER2+ is usually Kadcyla.
Take care, I wish you the best
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Thanks Olma. She has scans in late June, hoping to stay on HP combination for as long as we can.
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Hi everyone - I have been 6 years NED on H&P. I just discontinued Perjeta. Has anyone else in remission discontinued H and/or P? There is talk of some oncs at Dana Farber setting up a clinical trial.
sj
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I heard about that trial and I’m so interested in what the results would be. I hope they go ahead with it.
Not yet ready to change my regimen, I thought I was starting PHESGO which would be more convenient but I didn’t yet get the insurance approval.
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I've been on just Herceptin for the past 6 years. Perjeta was dropped after 2 years because of side effects.
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I'm stage IV so no dropping anything for me as long as it's working.
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Hawkeye - How long it took you to become NED?
Thanks
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Hello everyone, Soooo after being on H & P over 5 years now and my last few years of scans being N.E.A.D, I talked to my doctor about going off H&P-, he agreed (he said I am a Zebra among horses and since there is no data out there he really left the decision up to me-we have been tossing the idea around the last year) - I am now two cycles out of not having my infusion (still on dailey arimedex though) and starting to get cold feet and have second thoughts. I have a PET scan next week, and then will meet with my doctor. IF the scan is clean- IS it too late for me to change my mind? AM I crazy to want to go back on it? My daughter and another good friend had melt downs when I told them what I was doing. (My daughter reminding me, that I once said that if my cancer came back a third time, I just didn't know if I could go through the hard stuff again (taxotere, carboplatin, and the red devil the first time around)- of course that was said when I was at my lowest...and of course I would fight again if the need be BUT... . I just have been so tired and feeling so bone achy that I thought going off the H&P- I might start to feel stronger (not yet) the itching might stop (it hasn't), the muscle cramps (nope) and my eyebrows might grow back and hair thicken up (A girl can dream). The only positive has been that my b/m's are not as explosive (sorry T.M.I) . I skipped one cycle years ago when I was sick, and then had to do the slow drip when I got back on it- and I am okay with that . YIKES, I don't know what to do. I never thought my cancer would come back the first time (stage 3, double masectomy) but it did (I was on tamoxafin - and after stopping it at the 5 year mark, cancer came back 6 months later.) I don't know what to do, it is a good problem to have I suppose, but I am scared -cancer sucks. Any insights from you my friends will be treasured.
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I was N.E.D within a year of treatment, everyone was flabbergasted by the results. The cancer had spread to the scapula in my back, and was in 9 lymph nodes under my right arm- (I had felt a golf size lump under my arm, which sent me back to the doctor.) I started treatment immediately -
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hey cgull- just a thought about having to go back on chemo - if you had to, it's possible you could just do taxol, H&P which is gonna be a bit easier on you than the carboplatin, red devil, Taxotere or even Taxotere alone.
I was Stage 4 from the start and the initial Taxol, H/P got me to NED. And the MO told me I could do Taxol again if ever needed.
I feel like most of my side effects come from the Arimidex -since I wasn't on it for the first six months I could pretty much tell which side effects were “new" and seemed related to Arimidex. But it's the H&P that has me tied to the cancer center and getting stuck every three weeks. Would so love to be free of that - but don't feel I have a long enough time NED to try it yet - just completed 2 full years of NED scans after a met woke up in 2019 and was killed with rads.
It IS a big decision- but maybe see how your scan goes and give it a little more time? And get clear on what your backup plan would be with your MO - just in case
Hoping it does go well for you, I would like to see a whole herd of zebras becoming free!
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I have a Stage IV friend who is HER2+ and ER+. She is very lucky because just Herceptin still works for her so she still gets it every 3 weeks.
Taxol and Herceptin saved my life. Did just Herceptin for almost 2 years after and that stopped working so moved to Kadcyla and I seemed to become allergic to that. I am now on H and P and pray it continues to work. Cancer learns the treatments and will then get around the treatment and come back again.
I am 10 years out and for me I'll do H and P until it no longer works, however long that is. I am praying I get to die of something else besides cancer. This stuff sucks.
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