HERCEPTIN and/or PERJETA Threads
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HI gamma2192! Diagnosed Mar of 2014 with mets to liver. Did 3 rounds of taxotere, h and p. Eventually dropped the p because of neurological itch and neuropathy. I've been "this close" to NED for 4 or so years. There is a tiny site on my liver that is still picked up on MRI.
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Hawkeye. CT scans still pick up stuff on my liver but that is scar tissue from treated lesions (thank God and knock on wood). Has a PET scan or biopsy been used to check if that lesion is active disease?
Susan
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Hi cgull
I have been NEAD since 2018. Oligometastic to a LN in mediastinum. I dropped Perjeta in March 2019 and continue on H every 4 weeks. It is a risk but hopefully there are other lines of treatment.
Liz
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I stopped herceptin in Jan, 2015 and have remained Ned on no meds. I am er- and had 2 liver mets. I have been Ned now for about 10 1/2 years
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Lauriesh, 10 years NED that’s so wonderful! And six years off all meds? Do you mind if I ask, was going off H your own idea, or due to complications from Herceptin? How did your oncologist respond if the idea came from you? How often do you see the onc now and do you get scans regularly? Thanks in advance if you feel like answering, and wishing you continued success
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Lauriesh, this is the best message I have ever read in these threads, I have no words... Saulius:)
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I stopped due to side effects. I had added in perjeta when it first became approved and did about a year or so before I decided to stop that because of diarrhea, bloating, etc. I started to have increasing side effects with herceptin ( neuropathy, flu like symptoms), so started to take short breaks ( my idea, but my onc was ok with it). My neuropathy kept getting worse and it was my onc who wanted me to stop permanently. I was about 4 years Ned when I stopped in Jan, 2015. My onc agreed that if I had a recurrence, I could just go back on h & p and not have to add in chemo.
I had scans every 6 months for awhile, then went to once a year and now, only have them if I have symptoms or my tumor markers go up. I see my onc every 9 months or so. My old onc retired and my new young onc wants to see me every 6 months but I want to go to go once a year, so we compromised.
I did do a her2 vaccine trial at University of Washington in 2011. I have no idea if that has helped me stay Ned. It has not been successful enough that it was ever approved and they are still doing different trials with it, so I will never know if it played a role or not.
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Gonegirl, I have lots of scarring that shows up. The spot in question continues to get smaller with each MRI. I've been offered a biopsy but turned them down. Single, working mom that I am who doesn't want to take the time! I have discussions with the oncology team once a year about when to stop treatment but am reminded that if cancer becomes active again they will treat with chemoand other meds. I've been extremely lucky this far. Who knows what will be recommended a year from now
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Thanks for the reply, Lauriesh, very interesting! I have read here and there about that HER2 vaccine but yeah, nothing seems to have come of it. Would be great if they could perfect one that could get more of us to become and to stay NED. And also more research into how we could safely stop treatment.
Well this discussion has me thinking about at least dropping the P especially if my PHESGO approval doesn't come through.
Thanks all for sharing great to hear from the unicorns / zebras among us - and I do hope there will be a herd of us very soon.
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My Sandra also had dendritic cell "vaccine" and cytokine induced killers - but we have one hi-tech pharma company that makes these things locally. It was personalized for her with her2 antigens (that all is in the signature - DC/CIK). We do not pay for oncology drugs in LT (covered by state), so Sandra will stay on HP as long as possible. She almost has no issues with HP combination, so why not... Saulius
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I am currently taking Herceptin and Perjeta and want to do international travel that could mean missing regularly scheduled infusions. I'm interested if anyone is doing the Herceptin and Perjeta by injection (PHESGO?) If so, is it possible to transport it and give it to yourself, or perhaps go to an Urgent Care location and have it administered while traveling our of country? Were the side effects similar to having HP by infusion? Thanks.
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Hi Pollyanna - as far as I know, PHESGO was approved in the USA for at-home administration by a nurse only. Not for administration by the patient herself. Herceptin does stay in the body a fairly long time so missing one infusion or even two, is not that risky, from what I understand, as long as you’ve been consistent otherwise. Of course, that’s not medical advice coming from me, but something to check out with your oncologist.
I have pushed off my infusions by a week or two a few times for travel or holidays, with no ill effects. So depends how long you’re traveling and what your doctor has to say.
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Update - getting my PHESGO today
My doctors office resubmitted and got it approved.
Will update if I experience different side effects. The switch fromIV Herceptin to Hylecta wasn't too eventful, some minor stuff like the watery eyes came back, so I am expecting the same now but we will see
Feeling just a little bit free-err
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Olma61, Thanks so much for the answer. It helps a lot to know I have some flexibility on infusion timing. I'll be talking to my dr this week as I have some travel planned.
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Hi ladies, good news there JavaJana, yes, it’s been two weeks since my first injection and I’m not noticing any differences at all right now. It’s a long injection, takes five to eight minutes to go in, I believe.
Felt some slight burning going in but not too bad. Definitely makes the appointment go by quicker and of course I don’t miss the “finding a vein” struggles (never had a port before).
Pollyanna, enjoy the travel! Actually I keep wishing we could have take-home meds, I would have no problem learning to inject myself if it meant fewer office visits.
Maybe we need to lobby the FDA and the drug companies for HER2+ freedom. They gave us these great meds that keep us living stable, we should be able to feel a bit more “normal” and enjoy this time we’ve been given¡
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Yes! I’m definitely grateful too - but always eager for the next innovation. When I started Hylecta previously , the nurse told me it was sort of a pellet that stays under the skin and dissolves gradually. That made me think of a contraceptive implant. A 90 day time release H&P implant would be great! I need to get a drug company interested.
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JavaJana: It may seem weird but I don't mind the time in the chair with my port. The infusion centre is quiet. I get a break from the sound of tv, music, talking and the ambient noise that is all around. I have read so many good books - especially when it was H&P and three hours of Taxol with the time in between each infusion, the pre-med time. It is now down to about 1 1/2 (getting weighed in, blood pressure check, temp check, waiting for the pharmacy to produce my doses) My travel time is only about 15 minutes each way. The H&P appears to be doing its "thing" with few SE's so I would be reluctant to switch right now. The port doesn't both me much, except my cat likes to stand on it, passenger seats belts sometimes hurt if I don't have the padding of thicker clothes. Sometimes it is itchy.
My MO when I was starting just H&P suggested I might want to think of travelling. That was before Covid-19.
Lauriesh: I hope the Her2+ vaccine new trials will draw better outcomes and it will be offered to non trial patients.
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gonegirl: I had never checked out your blog until today. What good writing! And bang on. As a Canadian who is heavily-taxed and living in what a lot of Americans would see as a "Nanny State" I am so grateful for our universal health care. When I had my De Novo Stage IV my terror was not complicated and made worse by "OMG, what if I can't work, lose my insurance?" "Will I lose my house to pay to cover this?"
I get sad and angry on behalf of the posts that read 'hoping my insurance will cover this" "waiting on insurance" "insurer says since my last PET was clear a year ago they won't pay for another because it is unnecessary" Says who?
Universal health is NOT SOCIALISM/COMMUNISM it is a human right, given to all of the developed world except the USA.
I often think about DC not being a State but still paying taxes. So right. No taxation without representation. WTF?
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JavaJana: I hear you. I am happy to be in a location that is no more than 20 minutes on average from all sorts of medical facilities. I do my blood work about two days before infusion so my MO can check it. The blood draw is literally a block from where I live. Luckily my oncology infusion centre is smallish and I think I was only about 10 minutes late - once. It was a nurse in training so she took longer timing things. My scan is done at the BC Cancer Agency which in only about 20 minutes away, the longest drive, unless traffic is heavy and I don't mean freeways - just local traffic with four lane roads. BCCA is considered to be the Gold Standard for cancer care in BC but frankly, my MO was completely lacking in compassion and yeah - the chairs are swankier, there is a loo for about every three beds but it boils down to "it is all the same drugs I am getting, I don't care that I am in a room that has more than three chairs in each room. The nurses are lovely and before Covid there was always a volunteer who came around offering cookies, juice, even coffee and tea. And before Covid - a super book lending bin. So I am really really really grateful.
I used to go to BCCA when I was first DX'd but I really disliked my MO. My new Mo, who is a gem, is about 15 minutes away unless there is trouble on the Iron Workers Memorial Bridge, there always seem to be something - usually nothing that stops me from crossing at all. Happened to me once, not going for infusions but going to the local Michael's Store. I was in the centre lane when it slowed down even more than usual midspan then stopped completely for over ONE hour. So happy to have a full tank and not have to pee. Turned out a chunk of a crane fell off the flat bed it was on. I should have been tipped off when I turned onto the main street that takes you to the bridge and saw how slowly they were moving a few blocks from the turnoff. I would have had a chance to change lanes and go back home.
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That is so encouraging. Thanks for sharing.
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I am also in Ohio and go to my local CC. I have several masses in liver and your note was encouraging. Thanks.
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Quick question, has anyone noticed an unusual skin response while on Herceptin? It seems most likely Galvanic skin response in my case and is like a mild static electric shock but only related to fear (for me). I’ll get a shock to my skin (chest and arms) when I am startled, trip on a rug, drop a knife. I had a particularly painful reaction when I was in close proximity to a sudden car accident. I suspect it’s related to Herceptin because I never has this before and wonder is epidermal part of being HER2 is influenced in some way.
I’m someone who seems to attract the rare and very odd side effects but curious if others have experienced this too.
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Hello out there,
Haven’t been on in a long while but still here and still taking Herceptin and Perjeta every three weeks and Zometa every six months. 6 years plus on treatment for stage iv.
That’s it.
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We just got the echo results for my wife and her EF has dipped to 45-50% (Oct 8) range. We started off with 70-75% in March 2021. Onc wants to hold off on subsequent HP treatment till EF comes back above 50%, Onc wants us to see a cardiologist.
Anyone else having experience with ejection fraction and what has worked for folks who had this issue.
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gamma, after years on H&P, I had an infusion of Kanjinti (a Herceptin biosimilar) and my EF dropped to 45% too. I was put on a 1 month break and the next echo improved to 52%. After that, I resumed Herceptin exclusively with an echo before each treatment and was prescribed low dose carvidilol for heart protection. Several months of good stable echo’s, I went back to checking EF every 3 months but remain on the heart meds. This was a year ago and I’ve had no further problems and the treatment break did not result in cancer spreading or getting any worse.
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gamma2192, I have also suffered twice from reduced EF while on Herceptin. Both times I have skipped a dose or two and retested the cardio to see that it has recovered. I’m followed by a cardiologist too (I have echo every 3 months) and I’m also on carvidilol as well as other BP lowering meds. I never needed cardio meds before all the BC drugs so my personal belief is that other drugs I’ve been on have also affected my heart (cardiologist not as convinced of this) but Herceptin definitely is known to cause (usually temporary) EV reduction. A short HPbreak should allow your heart to recover.
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Thanks MargritaMS, we saw a cardiologist and he did echo again and EF turns out to be normal. He advised us to do the a protein test (blood) test every other infusion. So we are ok for now!
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Wife has lost over 25 pounds (around 20% of pre-treatment weight) since start of her treatment March, 2021. 6 cycles of THP and now on HP. Does anyone else having similar issues with weight loss while on HP? Any advise on how to increase weight or other supplements that she can take (wife is vegan).
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Gamma, the weight loss is likely from the T in the chemo combination. I started regaining my weight loss after a month or two on H&P alone. I’d recommend her having whatever vegan food or treats she likes to help her appetite return.
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