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, Kari
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 :)
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 ?
Feeling overwhelmed and anxious
hi everyone i have been diagnosed with breast cancer with HER2+ , stage 2a. I saw the oncologist for the first time yesterday and I will be having the following- FEC x 3 cycles, 3 weekly then TH x 4 cycles, 3 weekly, followed by Herceptin only for 13 cycles, 3 weekly. I am considering a port as I had such a horrible time with needles recently when I went back into hospital with an infection in my breast. The thought of a cannula every 3 weeks is making me feel sick. The oncologist thinks I should give the cannula a go the first time and I can have a port or picc if I want for the following treatments. I only have one good arm they can use due to an auxiliary clearance. He also said that I could have the 13 cycles of Herceptin injected straight into my leg rather than IV. Has anyone had experience of this? thanks so much.
All in my head
Onco says Herceptin does not cause side effects even though the manufacturers of herceptin says it can. So, the peripheral neuropathy, sore throat, itchy rash, ridged and cracked nails, breathlessness and insomnia are all shrugged off by the Onco because Herceptin couldn’t possibly cause them. Each new round of herceptin adds another dimension. I wonder what my head will dream up of adding next time? Next ECG test in a few weeks so hopefully that is still behaving. It is the only side effect my onco acknowledges may occur. Admittedly, some of these side effects only occur in 10% of those who choose to partake of this drug. Oh well, only five months to go.
Experiences with Docetaxel, Herceptin, and Perjeta
Hello ladies I am newly diagnosed with stage II, HER2 pos, E/P receptor neg breast cancer. I have been reading your posts this week and feel very comforted by the great combination of information and support. The process has been very confronting for me, but the kindness of others that I have experienced along the crazy path of investigations has been very welcome! Next week I will start on Docetaxel, Herceptin and Perjeta. I will have breast surgery after 4 cycles, and then stay on Herceptin for 1 year. I was wondering about other people's experiences with this combination - how were the side effects and any tips for treatment days? I am also wondering about making the choice for surgery between mastectomy and lumpectomy/radiation. This seems to be left up to each woman to decide. My gut instinct is to get rid of the breast tissue to decrease further risk in the future, but is this the best option from a recurrence perspective? How have others made the decision?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
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 ❤️❤️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
What Happens When You come off Herceptin ?
Hi I am 52 and have just finished my year of treatment. I had 6 rounds of chemo, lumpectomy,sentinel node removal, radiotherapy and 18 Herceptin infusions. My periods stopped at start of treatment and I've had no hot flushes etc. Now I have stopped hormone treatments will things change? Will I get menopause symptoms? Will I feel any different?