HERCEPTIN and/or PERJETA Threads
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I had a helluva time trying to relocate this thread. I missed the "and/or" so I got zero hits. I looked for a member whose name I recalled who had posted some time ago and found it. A very quiet thread. It is a Good News thread mostly. Saulius, was that post from Lauriesh? I was bowled over when she wrote she had been NEAD for years and off treatments entirely for several years.
Peoy: how does any MO come up with something as precise as 57 months? 56? 65? In any case, yes - there are many HER2+ ladies out there still chugging along.
Olma: a 5 month break and still NEAD. Rejoice!!!
arc66: I think it is Perjeta that has given me a permanent rash over my eyebrows, but it is pretty minor, My back gets itchy itchy itchy and I end up rubbing my back up and down on a door frame like a bear against a tree. But I have always had a back prone to itch. Too hot showers every morning maybe? Taxol left my three little toes on my left foot feeling like they were encased in bandages but then well into just H&P (2 yrs?) I started to notice increased neuropathy in both feet. I saw an neurologist for an EMG. Sensory peripheral neuropathy. It feels like I am walking barefoot on wet sand. It affects my gait, just a bit. I list a little to the left. After reading BestBird's stuff, I decided to try Alpha-Oleic Acid. My MO was skeptical but said it wouldn't harm me. I have started to notice some improvement. Even if it is placebo effect I don't care. It is working. I also bend my toes as far back towards the top of my foot as I can. STRETCH. I do that sitting on the couch watching telly. It has only been a few weeks so I'll let you know.
I don't mind the infusion time. For me it is quiet time to put up my feet and read. No TV's, CD's playing, household noises. Getting there is under 30 minutes if traffic on the bridge is normal. My H&P are 30 minutes each. Add in my weigh in and then waiting for the pharmacies to get the bags ready it is about 1 1/2 hrs. max. at the centre.
Hi to the rest of you H&P'ers
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Dear Elderberry, nice to be hearing from you!:) Did you mean this thread: https://community.breastcancer.org/forum/8/topics/...?
Saulius
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On that topic, I had gone to twitter to see if I could find the lady who was off treatment for 34 months and I did find someone. I noticed that this is was in the tweet she was replying to (a report from Kaiser researchers re the discontinuation of HER2 treatment in long term HER2+ MBC survivors)…..
“….SABCS abstract from Kaiser researchers re discontinuation of HER2 treatment in people on long term Herceptin. …….#Embrace event”
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Hi elderberry
The median overall survival is 57 mths based on CLEOPATRA trial (1st line treatment THP). Since then, 2 more drugs are added, Kadcyla and Enhertu. Perhaps it will add to the overall survival? I don't know.
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saulius: I looked for Herceptin and Perjeta and variation and just got texts from posts that mentioned HP but not a specific thread. It was HERCEPTIN and/or PERJETA that was the proper hit. I missed the and/or part.
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Dear Elderberry, it is great now you are here! Saulius
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8 years down and in to my ninth on first line cleopatra. Lots of new drugs available since I went metastatic in 2015
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Hey all….I’m still earthbound, although I haven’t stopped in to this site for awhile. All the notifications in my email box made me click back in. Glad to see everyone on this thread still earthbound too…😀
I am still on anastrozole + PHESGO every three weeks, just completed scans and echo, everything remains stable and clear. A little miffed that I have a new doctor who wants scans and echo every three months, I had been on twice yearly scans with my other MO for the past 3-ish years now. Maybe she will relent after a few clear ones? I hope so. That’s what I get for living the nomad life, haha.
I edited my most recent post above (about discontinuation of HER2 treatment) to add back the images, I see the new forum update had deleted them.
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Dear Olma, nice to hear you, and even nicer that you are doing well! Do you think if it continues like that you could also go for discontinuation, I mean, are you considering that? Hugs,
Saulius
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My Onc is a "scanner", I have to get them every 3 months also even though they have been stable for 4 years now.
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Hi Saulius, hugs right back to you and your wonderful family. Yes, I have been thinking about discontinuing, I contacted Dr Heather Parsons about the STOP-HER2 study and she put me in touch with the trial coordinator, they have just started recruiting. But ultimately, I am still afraid to stop H/P long term. Even though my little drug holiday did not harm me, apparently, and I would love to be done with the frequent visits to the cancer center and the risk involved — the cautious side of me says wait and see what kind of results come out of these studies.
There is a similar study for HER2 MBC pts in the works at University of Miami in florida which has not started recruiting yet. Maybe I will wait for that one.
BigPeaches, thanks for chiming in, I do feel like this doc has a “doing too much” approach compared to previous ones, they are requiring 6 tubes of blood at every infusion too, previously I would get a finger stick only on alternate visits and then three tubes on the next visit. Annoying and I feel like unnecessary, I don’t know whether to think it’s a money grab or just an attitude of being overly cautious with this place. Really glad I bought my supplemental medicare policy though.
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Dear Olma, yes, I completely agree that it is a very brave option… and a stellar understanding and knowing of yourself is needed to come up with such decisions. I still feel it is a great opportunity to be both in clinical trial under supervision, and an opportunity to start a new life, a life of someone who is considered to be "cured". What a path these people in this clinical trial may lay for future NEDsters! Best of luck for decisions in the future - we are with you on all roads. Hugs,
Saulius
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