Long term Herceptin
Hi was just wondering how long people have been on Herceptin and how they are doing? I have celebrated 14 years this January and will have my 238th infusion next week. I have had a mastectomy and am waiting to have the other one removed as I hate the lopsided feel and having all my clothes moving to the left very annoying would much rather be flat. So far everything is stable and the Herceptin is what they call maintenance dose to keep me stable. hope everyone is coping as well as they can ❤️❤️
On herceptin and perjeta , stage 4 , itchy skin and now itchy scalp -anyone treated itch sucessfully
I’ve been on H&P for over 12 months -experiencing itchy skin for last 4 months or so. Mostly red spots on chest and shoulders/back Told oncologist and am using cortisone cream on chest and shoulders; also getting DEX with each three weekly H&P infusions . NOW have developed itchy scalp - last night I ended up getting a freezer block and putting it on my head in bed ,which whilst seeming to,help is tricky in that the freezer block does melt so end up with wet pillow. Freezer block square so doesn’t mould onto scalp properly I’ve tried taking antihistamine tabs as well , itch on back/chest better although hasn’t gone im seeing dr again this week so will ask her what I can do , but thought I’d ask if anyone here had same issues and what did you do to help ?Herceptin 11 years on
hi everyone long time since I have been on here as things were going as well as can be expected but now I have this cough which I have now had for approx 10 months that just won't go. My GP says my lungs (which is where my mets are) sound fine but the cough is heavy and loud with a high pitch - it even scares my dog lol. It is so tiring to cough like this it sounds like its loose but its not. I already have fatigue problems and this makes it worse. I am coming up to infusion number 200 so wondering if it the cough is due to being on Herceptin for so long. Has anyone else had any issues like this? I hope everyone has survived covid-19 lockdown and is doing well Sue
Herceptin, Palbociclib and Letrozole combination
Hi everyone, this is the first time I have posted in this forum, so hello :) I am currently doing 18 weeks of chemo and 3 weekly herceptin treatments, and my scans are showing that the cancers, which are in my liver, lungs, bones and lymph nodes, are reducing quite a lot. So far I am at week 13 of treatment and some days I am really struggling to cope with all the yucky chemo side effects. When my 18 weeks are up, my oncologist has suggested I go on a trial for Palbociclib as well as Letrozole and continue with the herceptin. I am pre-menopausal and 45 years of age so I think that's why I'm eligible for the trial. Anyway, I have read all the side effects of Palbociclib and Letrozole and it really scares me. Is there anyone here who is currently using this combination of therapy and can you please tell me your thoughts / experience? many thanks xx
long term herceptin for bc mets....
Found an old discussion from Kari_2015. Just wanted to let ladies know that I have been on Herceptin for 13yrs. Managing to keep lesions only in bone so pretty happy with that... Only know one other lady that is on herceptin still...been 11-12yrs for her too. My understanding is that if you are going to have problems cardiac wise it is more likely to happen in the early stages. I have reg echo's done. Get pissed off with having treatment at times but very thankful for this drug... would love to hear from others that are on herceptin long term.. cheers :)
Anyone else on Herceptin & Perjeta indefinately???
Hi Ladies Hope everyone is doing well, it has been ages since I last visited. I was wondering if there are many out there who are undergoing herceptin and perjeta treatment every 3 weeks with no end date like myself. I have now been doing it since about April 2016 and while my side effects are fairly minimal; I have started thinking about what I might expect if things continue the same. I imagine the build up in my system will increase the side effects, so far my heart function is fine....but wonder if it will stay that way. Most people I have talked with only stay on this treatment for the 12months, but as mine travelled into my spine the oncologist says this treatment will remain as it appears I am "responding to treatment". Thanks, KariHerceptin side effects or brain mets ? Freaking out.
Any one have these side effects . Lately I've had sinus pain just dull. Occasional stabs in temples sore scalp and only once a neck click and pain stab behind eye and a funny feeling like an itchy crawl on crown of scalp . Apart from that I feel fabulous . Feel super charged... but doctor Google has for me to tell it plainly frozen with fear. Bloody Google seriously why in the middle of the night do I Google. Panic !!!!! Can't get back to sleep. My tumor markers are low .I don't wish to tell my onc yet and......if by chance it's what doctor Google says I know that's it. This disease does your head in . Please tell me if someone else on herceptin and perjeta suffers this a little so I can calm down .Her 2 ladies can you offer any desperately needed advice?
Hi ladies I have a huge dilemma. As anyone who has read my posts I am on herceptin and perjeta for ever. Unfortunately I have down the past 10 months suffered terribly with a severe skin reaction. No creams no antihistermines dermatologists or many other treatments have helped. If finally appears its an immune response my body has reacted with that affects my mast cells and produces an extreme over abundance of histermine causing severe burning and itching and many many sleepless nights in ice and tears. Slowing down infusions tablets before trying the herceptin alone and visa versa no avail even extending 3 weekly infusions to a month and 6 weeks. So here I am..... Do I stop treatment ? I AM SCARED STIFF i can not live like this anymore however sadly the dual treatment has worked wonders for me elimination of liver tumors all 12 and 4 spinal mets . HELP please? My oncologist says well it' your choice? I DO NOT WANT TO DIE I am to young.Long term herceptin only anyone ? Need some advice from experience please
Hi ladies I am 12 months into herceptin and perjeta 3 weekly infusions and suffering terribly with insane burning and itching of my arms neck and shoulders. So much my life and most of the night is in ice and ice packs cause absolutely the one hundred solutions haven't worked .... it appears with me to be a skin toxicity reaction to the perjeta. My oncologist says it' half shelf life is designed to have the drug sit in body fat and slowly release over the 3 weeks till next infusion and I Have very little body fat causing an immune skin reaction that is severe . In aus perjeta can't be stopped and restarted and the drugs are working miracles for me .........but I think more and more no sleep is literally mind blowing and I'm feeling so desperate constantly with the burning itch. So I'm scared of going off perjeta and going herceptin alone and scared of the implications of not being able to return to perjeta if I need it ..... oh woe anyone else in this or been in my dilemma?????
Herceptin and stomach pain
anyone else have stomach cramps on herceptin? Its like it throws my whole bowels into mayhem and I get spasms and cramping which takes my breath away. Heatpack and targin and panadol seem to work best, and I have to keep my movicol dosage up as otherwise I end up in hospital again with an impacted bowel. so share your experience with long term herceptin usage, I've been on herceptin now for over 5yrs