Hi all ?
I’m feeling very down about herceptin at the moment. For some reason I thought that the side effects would not be anything like chemo, but I’ve felt so sick and very tired for over a week. It was my first Herceptin only dose last week and the thought of feeling like this for a year is making me very sad. I know it’s a wonderful drug and I’m lucky to have access to it, but the prospect of months of side effects is going to take some getting used to. Sorry for having a whinge but I don’t want to go on about this with my nearest and dearest so here is where I vent!
Best wishes to all
Jacq x
Thank you Jay68 for your kind words, I’d be lost without this forum.
Yorkie I’m looking to that tiny glint of light at the end of the treatment tunnel and staying very grateful for these wonder-drugs. ??
I have been off Herceptin since June of 2018. Can anyone give me a timeframe of when my legs will be stronger. I just went to go to the store and couldn’t because my legs were so week.
I finished my Herceptin In February and aside from the odd joint ache I can safely say that I am finally beginning to feel better. The muscles in my legs do feel weak but that is partly because I haven’t been as active as I used to be. I have managed to walk my dog everyday but it has been quite an effort. However, I have started cycling again and I didn’t feel exhausted as I have previously. I know everyone reacts differently, but the nurses told me it takes 6-7 months to clear Herceptin from the body so you may have another 3 months to go. The bottom line is that you do feel better as each month ticks by but I suddenly felt loads better when I reached 6 months post-Herceptin. I am finally hopeful that all those joint aches will disappear - fingers crossed.
1 Like
Struggling hard with the joint pain from my first dose of Herceptin.
Can anyone give me any tips on how to relieve the joint pain please Have tried both paracetamol and codeine with little effect.
Does your body tolerate it the more you have? I deal well with pain generally but this is a challenge and half.
Hi
I’m sorry I can’t answer your question…I still have six more to go and my leg muscles are stiff, sore and weak especially my knees…I find it interesting to read some of the advice from people that have finished treatment post… everyone’s recovery is different…maybe a short walk every day might help… wishing you well.x
Hi all, i finished chemo in January amd have now had 13 Herceptin injections. I also started letrozole in april and take it everyday. I actually feel wrecked!! My legs are heavy and stiff. When i stand up i have to wait a few seconds before i walk. Once i’m walking i’m ok. I have backache and now my shoulders feel like they are breaking and my kneck is stiff! I returned to my job as a teachet, full time in September and i am feeling so tired. I am gutted as i thought i would ne so much better by now! Xxx
Thanks jay68. I have had thyroid test but not diabetes so i will get checked
Are you feeling less tired now that you have finished? Xx
Feeling your pain! I am on same treatment, and I am having a devil of a time with Herceptin. I absolutely hate it :( I have my infusion every 3 weeks at home, via a drip rather than injection. Every time I swell up like a balloon, inside of my sinuses/nose/throat etc swell up, I get really wheezy and out of breath, I itch like crazy all over for about 7 days afterwards, at night my feet and lower legs get really hot and feels like bugs crawling around under my skin, I have a headache for about 7 days after the treatment, my insides go into meltdown, my brain hates me, and all sorts of aches and pains. I find as I am receiving the drug that my head feels weird and I get a bit confused and wobbly in the head. It is absolutely horrible, because as you say, health professionals just dismiss you when you ask advise about the side effects because apparently there aren’t any. I have had 8 treatments so far, ten more to go ugh.
It also freaks me out that there is a risk of heart damage from the treatment…
And you get halfway through second week and start to perk up and then week three comes around and with it treatment then back to poo again. Does rather make one a bit of a negative puss ha ha.
It has been 10 months how since day of initial diagnosis to where I am at with treatment (having had chemo, radiotherapy etc. etc. etc.)… and it feels as though it is NEVER ENDING! hard to keep positive sometimes, so I right there with you MOAN MOAN MOAN ha haaaaaaaaaaaaaaaa.
Hope things get easier for you, for everyone, all of us! Soldier on we must : ) xxx
1 Like
Just wanted to share my thoughts on Herceptin. I’ve had a break from chemo as I’m on the ROSCO Trial, my last treatment was 1 Aug. I’ve been having herceptin three weekly and have found the side effects to be quite debilitating. The muscle and joint aches keep me awake at night and my nostrils are sore, bloody and crusty, yuk! I also have bowel problems and low grade nausea. I know that this drug is a life saver but it is depressing to think that I will suffer these SE’s for a whole year. Also I’m dreading the addition of tamoxifen in the new year. Trying to stay upbeat but it’s a struggle ?
I am at the point where i have no idea which drug is causing which side effect! I have now had 15 herceptin and have been on letrozole since April.
My shoulders are so painful!! I need help to get my coat on amd my top off when getting undressed. I feel shattered most of the time and quite down. I am short tempered, snappy and tearful. I seem to have a cold most of the time with a low grade sore throat. My nose is completely dry and crusty and my mouth is always dry too. My eyes are crusty when i wake up in the morning - or the middle of the night - as i am not sleeping great. My legs are heavy and stiff when i first get up from sitting!
I have just stopped taking letrozole as my onc nurse said to stop for a month as that will help us to see if it is the letrozole causing the shoulder pain. I dont really want to stop but i am giving it a go! 3 days without it but no improovement in shoulders yet!
Chemo was yuk but i knew it would end. I think i feel worse now because if this is going to be long term it will affect my whole life.
Roll on the end of Herceptin!
Sorry to hear about your side effects.I all so had pain in my legs ,started with my feet and ankles swelling up and because you they don’t test your blood very time you have the drug it got worse and when i mentioned what was going on the oncologist said
"My feet swell up at the end of the day "
(She was a quite a heavy doctor) and then said to all the women “your blood pressure are all up today” another side effect .This was near the second last treatment. I ended up having to go to my doctor .and when he saw the swellling in my legs and feet sent me to A&E incase the fluid was going into my lungs as that came back that it wasent I came back home and then after another 6 days the pain and swelling
got that bad I couldn’t walk so back up to see my GP he sent me back down to A&E
Was admitted for a week because I had that much fluid in my body
I ended up with kidney disease.Ended up in Renal seeing a consultant and put on a drug for people that has kiddney transplants and long term steroids that have side effects. Just finished haveing to get check up last year. …I’m now free of Edema and the drugs …I stated my treatment for breast cancer on February 2007 first Cemo , Radio, Hersepiton.Got the all clear for the breast cancer and the kiddney has got back to normal again but it has been a long hog .Don’t think my body could tolerate all the treatments and my Kiddneys suffered …The kiddney specialist put a yellow or red flag warning for the Herseption drug .Put never comitted saying it was that that caused the kiddney Disease .I sopose my cancer hasen’t returned .So I have that to be thankful for…Thoughts and prayers for you all that are going thru treatments .just a warning if you think something is wrong with your body like my legs swelling up and it took my GP to send me to A&E for my Oededma not my onchologis.
Hi everyone, I had Herceptin number 16 last week, after a few days of having it i get flu like symptoms, high temperature, aching joints, nasal congestion, sore throat, cough etc…been to doctors and they wont give me an antobiotic. I only have 2 more to go and will be glad to be finished, then its just the letrozole…I had the all clear for my first year mammogram which is really great news but the side effects from the herceptin is really making me feel miserable and ill when i should be celebrating…does anyone else have side effects like this from herceptin? Thanks in advance.x
Hi Dizzy I have had the flu like symptoms several times about a week after my Herceptin injections. I have had to attend the walk in and the doctors a few times with temps and been given antibiotics twice for tonsillitis and a chest 8nfection.
I have just had my last Herceptin injection this week so hoping my body starts to recover- although it does stay in our system for 7 m9nths after treatment ends. Good luck xx
I am happy to report that in my seventh month after my last Herceptin my legs have finally gotten stronger. I was getting very depressed thinking that it would never happen. Well, I am here to tell you that it will. I still don’t have the energy I had but I started doing deep long stretches and then strengthening my muscles and it feels good. I gained 15 pounds with the Herceptin and then a complete hystorectomy. I finally feel well enough to push myself with exercising. Hopefully this time next year I will be back in my old clothes and fit. Don’t give up cause you will get better. I still feel very depressed at times and don’t want to go on but I am determined most of the time to pull out of my depression.
1 Like
Thanks Regina for posting this. It is really encouraging to know. Happy 2019 to you and I hope things just continue to get better xx
Hello Marco,
When I had Herceptin, I use to experience the getting a cold type symptoms and feel a bit itchy a couple of days after having. It started from the second one. Blood test to check liver was fine. No obvious cause apart from reacting to the herceptin. However, as suggested below, I use to take an antihistamine day before and on the day (just bought unbranded - certirizine hydrochloride was main ingredient rather than Loratidine. 30 in a pack, Wockhart make, cost £1!) It did the trick. After using twice, I tried without and continued to 18 without needing.
All the best to you,
Chick ? x
how are you doing ive juat been diagnosed er positive her 2 positive would like some feedback
thanks ruth
Hello all, wow this tread has been going since 2014! I’ve just had # 17 infusion of herceptin, I have pertuzimab aswell put though at 30mins each. I have one more to go and cannot wait to be done. I thought I’d add my experience with side effects:
My last chemo docetaxol was 27th March 2020 and I had hoped that i’d be done with all the body aches and pains once I started on just having the her & per but nope! It’s definitely not as bad as when I was on chemo but for me it’s definitely not without side effects.
Runny nose- will just spontaneously start dripping like a tap, cannot go anywhere without a tissue!
Loose Bowles- usually starts the day after infusion and lasts about a week. Not normally as bad a diarrhoea, just very loose.
Achy, stiff muscles- normally starts around day 5 after infusion and lasts for about 5 days but this has got worse and lasted longer with each cycle. Mine are mainly shoulders, arms, back and legs so pretty much all over.
mild pins and needles in tips of fingers.
fogy/thick head feeling- to be honest this come and goes throughout the 3 weeks.
Fatigue- comes and goes, one day I seem to have lots of energy and the next day all I want to do it lay on the sofa.
Insomnia - definitely worse within first week after infusion.
slow growing nails that break easily
hair has grown back but slowly, eyebrows still very sparse. Eyelashes are back but not as full or long as before chemo.
Dry itchy skin patches- mainly shins and tops of arms.
Chills - feel the cold a lot more especially day of and day after infusion
I started Tamoxifen in July 2020 and this definitely made the aches and pains worse. I occasionally get bad cramps in my calf muscles too.
I try and exercise everyday and walking and fresh air helps a lot. I tried the Claritin but didn’t help.
I turn 47 next month but honestly feel like this whole experience has aged me 10 years. I just hope that once the herceptin/pertuzimab is finished I will start to feel more like my old self, all being said I would just like to point out that I am truly very grateful for being able to receive herceptin, it is a wonder drug for us HER2+ ladies.
Big hugs
sadye x
1 Like
Hello All,
Is it possible to revive this topic? Had Phesgo x 4 during chemo - all intravenously via PICC line.
Started Herceptin# 5 /18 (sub cutaneous) on Dec 20. Planned to continue until September 04.
Some side effects ie joint pains and itchy skin have become apparent as well as watery eyes/nose (might be the cold and cumulative chemo, surgery & radiotherapy effects).
I hope it doesn’t get worse. Wondering if anyone else reading this ‘old’ topic is experiencing anything or something similar?
Thank you & best wishes x