HERCEPTIN and/or PERJETA Threads
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haven't heard that but I'm on PHESGO shots now.
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Big Peaches, what is the substitute you received instead of Herceptin? I haven't heard about a shortage of Herceptin. But, I've been getting an infusion of Kanjinti, which is a biosimilar to Herceptin, since December 2021. I haven't noticed any side effects from Kanjinti. I hope your headaches go away.0
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I haven't heard of a shortage. I am in Canada and my next infusion is this Tuesday.
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I just got my first Phesgo injection. What side effects should I expect?
I am also getting Gemzar and Carboplatin, same day.
~ lulubee
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Have you been on Herceptin and Perjeta before? The only difference I noticed was a few of the usual side effects coming back like watery eyes and blood in my nose. No diarrhea though. If you’ve never been on H&P before the S.E.s might be a little stronger - diarrhea when I first started was the worst but it got better after a few months.
The first shot is over 8 minutes, make sure they do take the full 8 minutes, I find it pretty painless as long as the needle goes in far enough and the delivery is slow enough
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Huh. Interesting, Olma61. I've had watery eyes and a bloody nostril but I was chalking that up to allergy season. Maybe it's Phesgo. No diarrhea so far but then I've only had one injection. The Gem/Carbo I'm also getting is constipating to me, so maybe I'll hit the sweet spot in the middle somewhere, LOL.
I've never been on H&P before. This is the first time in 15 years that I've had any Her2 positive results turn up on genetic testing.
~Lulubee
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I am so happy to learn that insurance finally approved me for Phesgo! I've been doing infusions every three weeks for over six years (takes an average of just over 2 hours from start to finish) and to be able to just get a shot is going to be such a huge time-saver for me. Not to mention that I haven't had a port for almost four years, so no more hunting for a good vein! Hooray!
Glad to hear most people don't have too many unusual reactions. I still get watery eyes and drippy nose from the regular infusions, so I don't know that I will fare much differently.
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How have I missed this thread all these years? I've been on Hercepitin and Airmidex since 2008, Stage 4 Denovo.
Last year in January, I was given Kanjintin and after a few infusions, I didn't like the way I felt, so I went back on Herceptin.
I wake up in the mornings and feel like I'm drowning, with runny nose, post nasal drip, congestion, watery eyes, and I've always suspected Herceptin, but I don't want an alternative. My GP prescribes Fluticasone and it doesn't help much.
Sure glad I didn't read about a Herceptin shortage. I don't need any more drama with my health.
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Interesting that no one else has heard of a shortage from their Onc's. I see mine again Monday and will ask about it, they gave me something called Ogivri instead, said it was bio-similar to Herceptin. Headache's lasted about 2 weeks and a little pinch like feeling in my back that had me worried but it's gone now too.
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Bigpeaches, I hadn't heard of shortages either, but before I was approved for Phesgo, my infusion clinic was only offering Herceptin if absolutely requested. This started a little over a year ago. They didn't say anything about a shortage but just said everyone was automatically being switched to Trazimera or Kanjinti. I just assumed the biosimilars were cheaper, but maybe it was because of shortages.
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Sorry I didn't come back, had Covid! It was awful but thankfully I am over it. I am on Trazimera now, I suspect it's cheaper, I don't really know how much it is as I meet my deductible usually the first week of January. I am concered about one spot on my back, if I put too much weight on my left leg, it feels like I'm being stabbed in the back. We did some fall cleaning this weekend and I think I just did too much lifting. I have scans in a few weeks so we'll see.
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Sorry I didn't come back, had Covid! It was awful but thankfully I am over it. I am on Trazimera now, I suspect it's cheaper, I don't really know how much it is as I meet my deductible usually the first week of January. I am concered about one spot on my back, if I put too much weight on my left leg, it feels like I'm being stabbed in the back. We did some fall cleaning this weekend and I think I just did too much lifting. I have scans in a few weeks so we'll see.
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Scans came back with no progression and the pain must have been from doing too much. It stinks that cancer turns you into a hipocondrac!
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Dear bigpeaches - yay, congratulations!:) Saulius
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bigpeaches: Congrats on the scan. Yes, have MBC has turned me into a hypochondriac as well. I worry about any weird lumo, bump or pain. Happy you are over Covid.
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Hi, everyone, I hope everyone is doing well with Herceptin. I have a situation that I can really use your advice.
I have had this small rash on my chest since 2-3months ago, it looks like a insect bite, last week, I finally brought it up with my oncologist. Got the biopsy result the day before Thanksgiving that confirmed breast cancer. I have been on h+p since Oct 2016 due to Mets to lungs. I switched to Kadcyla after a single positive axilla lymph node was surgically removed in Jan 2021. Switched back to Herceptin bio similar kanjinti in April 2022 because the side effects of Kadcyla. Had a lymphedema surgery in August, 2022. I am wondering if any one know of any treatments for skin Mets other than switching to Enhertu or Kadcyla. Any local treatments options for treating skin mets Really hope to stay in Herceptin regime a little longer.0 -
Dear cheesyfroggy, first of all, huuuge congratulations for still being on the 1st line treatment (back from the 2nd but still) for so many years. That is amazing. You did not tell if you ever had radiation? If not, I'd say you must get a chest MRI and then, depending on how much skin is affected, and whether you had radiation before, you could get SBRT or whole chest radiation. I wish you to stay on Herceptin for a long long time to come. Hugs,
Saulius
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Hi, Saulius,
Thanks for your response. I had done radiation on the breast in the past, 10 years ago. So, I don’t know radiation is an option anymore. The skin mets have gone a lot worse in just last few days. I see more pink spots popping up that spread more than 5cm. I don’t know if it is triggered by puncture biopsy or something. My oncologist wants me to start Enhertu. I am going to see surgeon next Monday, personally I don’t see it as a option before change of medication any more after seeing the change in my skins. Biopsy results showed the cancer is still her2+, oncologist thinks the Enhertu can be very effective, and she is not considering any local treatments options, frustrating.
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Hi, Saulius,
Thanks for your response. I had done radiation on the breast in the past, 10 years ago. So, I don’t know radiation is an option anymore. The skin mets have gone a lot worse in just last few days. I see more pink spots popping up that spread more than 5cm. I don’t know if it is triggered by puncture biopsy or something. My oncologist wants me to start Enhertu. I am going to see surgeon next Monday, personally I don’t see it as a option before change of medication any more after seeing the change in my skins. Biopsy results showed the cancer is still her2+, oncologist thinks the Enhertu can be very effective, and she is not considering any local treatments options, frustrating.
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Dear cheesyfroggy, oh, radiation 10 years ago... There were a few clinical trials with 2nd time radiation and results are not that bad, even encouraging for some patients. But if you can get Enhertu, grab it asap. Don't know if you met LoriCA here (mostly in IBC lounge) - she had problems with multiple drugs until she started Enhertu, and that one was a salvation. She does not post often (Lori, we miss you!!!). I remember when my wife had punch biopsies, her skin used to get really red and react many cms around the punch-holes, so hopefully for you it also is just a reaction. You are right to see the surgeon. I'd also meet radiation oncologist. Gather as many opinions as you can. There are so many treatments now - cryoablations, brachyotherepies, etc. Hugs,
Saulius
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Dear cheesyfroggy, oh, radiation 10 years ago... There were a few clinical trials with 2nd time radiation and results are not that bad, even encouraging for some patients. But if you can get Enhertu, grab it asap. Don't know if you met LoriCA here (mostly in IBC lounge) - she had problems with multiple drugs until she started Enhertu, and that one was a salvation. She does not post often (Lori, we miss you!!!). I remember when my wife had punch biopsies, her skin used to get really red and react many cms around the punch-holes, so hopefully for you it also is just a reaction. You are right to see the surgeon. I'd also meet radiation oncologist. Gather as many opinions as you can. There are so many treatments now - cryoablations, brachyotherepies, etc. Hugs,
Saulius
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Hi, Saulius, I started Enhertu today. Surgeon didn't think the surgery is a good option any more. She said that she can feel a few patches of skin thickness around the original site of biopsy, which are probably cancer. There are small nodules she thinks are probably cancer. She said the surgery will lead to inflammation which ultimately causes more Mets in the area. For the rash that came out recently, she thinks the rash is mostly likely coming from allergeric reaction to the tape or the wipe being used for clean up the biopsy site, I am on prescribed cortisone. I have accepted the Enhertu is probably my best option at this time and am grateful that I can start the treatment right away. I wish your wife and ladies in this lounge continue to have success with Herceptin.
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Dear Cheesyfroggy, it is great you started Enhertu. I believe you will notice the effect very very soon. Please keep us posted in one of the Enhertu-designated threads. Hugs,
Saulius
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hi all,
just to give my twopence for what it is worth. I was re diagnosed on the 11th of March 2015 with stage iv breast cancer to lungs and bones. I am on Perjeta and Herceptin (my two best friends I hastened to add) every three weeks since April 2015. Today is my 137th dose. I only ever missed one session due to covid. My side effects to date are numbness in toes, tinnitus, total loss of left vocal cord but thankfully I had it successfully filled while under anesthetic last March but I need to get it done again as the filling in it is running low. I developed Asthma in 2020 and yes the dreaded “itch” which has been with me since 2017. I take a mix of antihistamines along with ice packs to help. My arms, shoulders and neck are the targets of this relentless and awful itch. Anyway, that’s it for now. Take care everyone.0 -
Dear arc66
Amazing. Nearly 8 years still 1st line of treatment. That's very encouraging. Wishing you many more years on this treatment.
I was diagnosed again in Oct 22 with lymph nodes & bone mets. MO drew on A4 paper 4 lines of treatment. Cleopatra being the 1st line. She also said prognosis is 57mths. I have read this whole thread and realised many beat 57mths.
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Hi Arc66 - I have been on Herceptin/Perjeta since January 2016 so I just reached my seven year mark on this first-line treatment and I'm so grateful! I switched over to the Phesgo shot in April and I love it. It seems to give me fewer of the itchy side effects, so maybe talk to your doc about it if insurance will approve. I also like not having to sit in the infusion chair for a couple hours. It takes only about 40 minutes now and the shot itself takes only 5 minutes.
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Yes, I am past 57 months myself and still on first line - I was recently on a five month break from Herceptin & perjeta and still had a “Ned" pet scan after that break. I was still on my anti-hormonal but no H&P for five months.
on February 4th I will be completing month 65 of life with MBC.
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I'm on month 46 on the first line of treatment so it is nice to see you ladies that have gone much further!
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Dear all, my wife Sandra is on month 65, still on the first line treatment. I have just red the comment on twitter where one lady posted that she had been on Herceptin for 13 years and now 34 months off all treatments and doing amazing. Wow... may us all continue like that. Hugs to everyone,
Saulius
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Saulius, great to hear! So very glad for you and Sandra. And the woman who is 34 months off treatment…just wow!
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