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Heceptin side effects?

29 REPLIES 29
justme
Member

Re: Heceptin side effects?

I finished my Herceptin last month after 16 infusions - my final dose was cancelled due to my heart function dropping to 49%. I am feeling very tired and achey, and like Jess have terrible cramps in my feet/toes.

xxx

JessieE
Member

Re: Heceptin side effects?

Hi all

It seems just about anything can be put down to Herceptin. I have had 7 doses and have suffered from insomnia since the first. I've tried warm baths, milky drinks, camomile tea, herbal tablets, lavender pillows etc etc. and am now on sleeping tablets which are helping to a degree. I think I have got used to feeling exhausted all the time and find myself wondering what it must feel like not to be tired all the time.

More recently I have had muscle cramps in my calves and feet.

Peacock I started to keep a diary and have noticed that I get really down emotionally about half way through the cycle, which lasts for a few days then gradually lifts. Everything else seems quite random.

As you say it helps to know we are not alone and I guess we are fortunate that we have access to this wonder drug.

Jess

peacock
Member

Re: Heceptin side effects?

Hi all
I've started keeping a "herceptin" diary, like I did with chemo, just to see if for a couple of months my symptoms are the same around the time of Herceptin.

Ruby, I hadn't thought about being food intolerant, but maybe you could be right. Although tummy wise, I haven't had "chemo tummy" (or maybe I should call it Herceptin tummy?) this week, so its been better but the aches and pains, and tiredness are still the same. So I think if it was a food intolerance I would have it all the time, rather than now and again?

Oh the joys of life with cancer - after cancer!

Pinkcrystal
Member

Re: Heceptin side effects?

I finished 18 herceptins early in 2007 and am still feeling very tired. Some days are better than others, but generally it doesn't seem to improve. My GP recently gave me blood tests but nothing abnormal showed up.

Ruby1
Member

Re: Heceptin side effects?

Hi Peacock

I just wondered if you have some kind of food intolerance - the reason I say this is because prior to chemotherapy I was dairy intolerance (have been for 7 years) and since chemotherapy I have also become wheat/gluten intolerant. When I eat it, I feel extremely lethargic, exhausted, achy, stomach ache, diarrhoea and various other problems in that area and just feel horrible. I seem to remember reading somewhere that the treatment can cause food intolerances. I just happened to see a nutrionist who did a test and diagnosed me - and since I've avoided wheat/gluten, I feel so much better.
Anyway, hope you feel better really quickly
Ruby xxx

peacock
Member

Re: Heceptin side effects?

I started Herceptin with my 3rd round of taxotere, I finished tax in Oct and have continued with Herceptin and just had 11th round.

I always thought my diarreah, fatigue, aches and pains were down to taxotere, but having stopped it 5 months ago I still have the same symptoms, so now I think it might be Herceptin after all.

Occasionally I feel nauseaus, although nothing as bad as when on tax. I thought I would start to keep a diary as I found the 2 days after my last dose of Herceptin I had chronic diarreah which reminded me of "chemo tummy".

My Prof - Onc - says that aches and pains are nothing to do with taxotere. I checked out the website and it states that it can be a possible side effect. Maybe I should let my Prof know!

It does help to know I am not alone, but sorry that we are all suffering from this wonder drugs effects.

Margareth
Member

Re: Heceptin side effects?

I have just had my first dose of herceptin, and have been feeling fairly nauseous since. I have lupus, so fairly consistently have achy joints and pains in my legs. makes it difficult to know if it is Lupus, cancer treatments or fatigue with just finishing three weeks of radiotherapy which involved 84 miles a day round trips.

Sam_BCC
Member

Re: Heceptin side effects?

Hi All

Just in case anyone is interested in reading the BCC fact sheet on herceptin, here is the link:-

http://www.breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publication...

I hope you find this helpful.

Kind regards
Sam (BCC Facilitator)

Poppyetta
Member

Re: Heceptin side effects?

Hi Roadrunner

I finished Herceptin just after Christmas. It's been a long slog and I've felt more ill on the Herceptin than I did on the chemo or rads. It took 14 months to have 17 treatments. I was supposed to have one more but I found after about treatment 8 (I had to have a couple of months off as I caught chickenpox - at 42, not nice!) on both occasions, my chest feels tight, I get breathless talking or trying to do anything phsyical. I then feel 'pale and pastey', low blood sugar level feeling, can get clammy, a bit shakey and exhausted. Although I don't wish these symptoms on anyone else, it is reassuring to know others are experiencing the same because I have had problems with my kidneys and was worried I have another problem waiting to be diagnosed.

I don't know if the following is related to Herceptin but my nails have started to split again. They did recover after the chemo so not sure why.

Unfortunately there doesn't seem to be any replies by ladies who are well beyond Herceptin to know roughly how long it takes to fully recover.

I'm just hoping as each week passes, I'll improve.

Poppyetta

RoadRunner
Member

Re: Heceptin side effects?

Heather,

It's good to know someone else has ended up as tired. I am now 5 weeks on from my last herceptin, and am feeling a bit better already.

I would be interested to hear what your onc says - I asked mine just before I finished herceptin, but he completely ignored me - he listened to me, then went straight on to something else as if I hadn't spoken. But then he was always like that, I always prefered it when I saw one of his registrars. He is due to retire soon, so maybe I won't ever have to see him again.

Dudley
Member

Re: Heceptin side effects?

Hey all but particular Road Runner,

Finished Chemo in Oct rads all of November Sarted Herceptin Dec 2007, finished Dec 2008 And I have to say I fell more knackered now than I did throughoput all that happenened in 2007. I'm seeing mu onc on 21st Jan so I will see what he has to say.
Most of all the other side-effects are same with me,dry eyes, Feeling like I'm 90 totally aching joints( I thought this was because of tamoxifen) maybe it's just a compilation of everything. All I know is I 've been told I will feel better 2/3 months after finishing Herceptin & I can't wait.

Heather X

ForumMember
Member

Re: Heceptin side effects?

Hi BoneyL

Diarrhea has settled. I did have a lot of itching in pubic area whilst on taxotere so I think maybe it was the taxotere that caused that rather than Herceptin.

codri1
Member

Re: Heceptin side effects?

Hi All

i have just had my 2nd herceptin yesterday along with my Docetaxol chemotherapy. this is a reoccurance of BC in 10mths. Not had herceptin last time, my heart was not up to it they said, However they can give it to me now due to the reoccurance. My chest feels heavy, and i got a terrible rash from the first one with diarrhoea. Many other side effects i have experienced since my first lot 3 weeks ago I cant beleive. My taste is going now, but i have 3 more sessions to go. then I am told maintenance on herceptin, which I thought was a bonus as i had to have a mastectomy in Dec 07 and was not looking forward to another. So i am praying the herceptin dont mess with my heart again and i can at leasat keep on it. I have to have another next week just to make sure......

thanks L

RoadRunner
Member

Re: Heceptin side effects?

Has anyone got generally worn out on herceptin? I finished chemo Sept 07, did rads, then started herceptin Nov 07. I was very tired at the time, but gradually improved through to this summer, when I felt my energy levels were pretty much back to normal. But since August I have slowly gone downhill, and am now feeling as tired as I did a year ago. I have just finished herceptin, so am hoping that I will start to improve again soon.

BoneyL
Member

Re: Heceptin side effects?

Hi Starfish

I had my first Taxotere last Thursday and first Herceptin last Friday and I have been experiencing diarrhoea for the last couple of days so I am wondering what has caused it - tax or herceptin? I suffered a lot of pain in the groin/pubic area - i was told this was due to the GSF injections, did you get this too?

ForumMember
Member

Re: Heceptin side effects?

Has anyone had diarrhoea? I was not told this was a side effect. I did have it on taxotere but wonder if is the Herceptin as it seemed to start on 3rd taxotere when I started Herceptin. Was getting better and then now worse after 3rd Herceptin on Monday.

dawnhc
Member

Re: Heceptin side effects?

It is interesting how differently we all react to this drug. I am just about through 5 years on it now - every 3 weeks. It has really become part of my life I guess as it will go on indefinitely as long as it works for me. Like Jacksy I have secondaries. But I really do not have any side effects that I can swear are due to herceptin. If anything some things have improved for me. I used to suffer a lot from sinusitis and now I never do :). I rarely get colds or infections, and that despite many chemo treatments over the years.

dawnhc

Jacksy
Member

Re: Heceptin side effects?

Hi girls,
I'm into my second year of herceptin (as I have secondaries) so feel like an old-timer!
I often feel nauseous and headachy later on the day I have herceptin, then 3 or 4 days later feel nauseous again and exhausted - like I'm wading through treacle.
I almost always get freezing cold during the infusion and have to ask for a couple of blankets - I think that's because it comes straght out of the fridge.
Incidentally, if you have a port or hickman line, you should tell somebody if you get badly feverish in the first 24 hours, as it can mean some bacteria have been pushed into your system, which were lodged in the tube - giving you some kind of infection.
I'll be on herceptin indefinitely until it stops working for me, so I'm envious of you ladies who know how many more you have until you're finished. Not trying to sound sorry for myself, but maybe it will make you feel glad in a warped way, to know it could be worse!
Jacquie x

waitingangel
Member

Re: Heceptin side effects?

Hello all

had first herceptin on friday,4 days ago. I too was freezing sold for 48 hours afterwards, but hadn't considered that it may be the herceptin so I acatually feel relieved to hear that can happen! Other than that, no real problems. My muscles continue to ache but no more than before.... I'm hoping that this will be 'easy'!!

Td x

maria40
Member

Re: Heceptin side effects?

oops forgot to mention i usually wear contact lenses and i am now unable to, optition told me that herceptin and tamoxifen can dry eyes out and reduce the amount of tears you produce.
maria

maria40
Member

Re: Heceptin side effects?

hi all
ive had eight herceptins so far and only started to notice some side effects. had mastectomy and recon on left side but have now got a lot of nerve pain in right arm and down right side. also i feel really cold for the first few days after infusion but this goes away. the only thing that really bothers me is the amount of weight i have put on, at start of treatment i was two and half stones lighter but onc doc says this is probably a combination of everything and should rectify itself once treatment is finished. heres hoping.
maria
xxx

MaudieH
Member

Re: Heceptin side effects?

Hallo to all, I have just had the 14th of 18 Herceptin infusions and seem to be getting a slightly different pattern of side effects. I did have nausea after the early treatments but that has gradually become less obvious - digestion is still poor for a day or so and food has no taste. The side effect that seems to increase after each treatment is a sensation similar to shingles with a sort of nervey irritation that now affects me from eyelids to labia. It lasts about 24 hours and I have been taking an all day antihistamine to buffer it. Today I had a piriton injection and two paracetemols before the infusion which has certainly worked better than the over the counter antihistamine. My sensitivity to potential allergens seems to be heightend, I was painting door frames with eggshell paint recently and came out in patches of fine blistery rashes, just like shingles. I have reported this to the onc, and the chemo nurses but they look blank and say, haven't heard of that one before! Has anyone else experienced a similar effect?
Thanks for this strand and the opportunity to compare experiences, Maudie

judka
Member

Re: Heceptin side effects?

Thanks for your reply Jan. I must admit I was starting to panic a bit as no-one else had indigestion and nausea. I wasn't too bad with chemo but took tablets just in case. When I mentioned it today as I was having my second infusion the nurse said she hadn't heard of anyone having tyhis as a side effect. So pleased to hear from you. Gaviscon just doesn't touch it.

Anyway hope yours clears up soon
love Judy x

TORONTO
Member

Re: Heceptin side effects?

Hi Judka,
I had my first Herceptin last Tuesday and experienced both indigestion and nausea. It isn`t all the time just hits me now and again so I`m sure it`s a side effect,

Sods law, I didn`t need anti sickness tablets at all through 6 months chemo and now I am taking them. I am hoping it`s just the loading dose thats causing it and no2 will be better!
Take care,
Jan

judka
Member

Re: Heceptin side effects?

Anyone had indigeston and nausea after herceptin? I started feeling sick during first dose which I put down to nerves. Now feel sick all the time. Dr just gave me Gaviscon but I wonder if I have a stomach problem or if its a side effect.

Chadders
Member

Re: Heceptin side effects?

Sorry Ladies, a thousand apologies for the way i started my email
Im obviously not " glad" that you are suffering the same as i am. I should have put im relieved to know im not the only one. Oh dear that doesnt sound right either. Maybe i should just shut up now. I think you all know what i meant anyway

Annxx

Chadders
Member

Re: Heceptin side effects?

Ladies

So glad someone else out there has had a delayed reaction to Herceptin.
I had my 5 th on monday and feel terrible. I had no problems after my first 3, was a little achey after 4. So had a few painkillers and went to work.
However this time my joints ache so much from my ankles to my hips im shuffling about like a 90 year old. Even my fingers and toes hurt. Also felt sick after, though not dizzy and am absolutely exhausted.
Struggled into work tuesday and yesterday ( ive already had a year off due to the chemo etc) but was woken at 9.30 this morning by a work friend calling to check i was okay. Even though i went to bed at 6.30 last night, when i got home from work, i must have zonked out as i was so tired and slept through my alarm.

Am due for a check up next week with my oncologist so didnt really want to panic and start ringing people. Thought instead i would check out the webiste. Must admit havent been on since my rads finished.

I am also on Tamoxifen as well so wonder if the combination is part of the problem. Think i will be in for a long session with the onc. Thats assuming he deems to answer my questions. Not the most talkative of chaps at the best of times. Its like trying to get blood out of a stone. Thats why i refer to this site first.

Carol, never though to check the rubbish, as i have mine at home too. Too late now though as bin men have been !

Let me know how you both get on and i will report back after my consultation.

Ann

xx

cb102
Member

Re: Heceptin side effects?

Hi Rachel,

Thanks for getting back, I feel a little more reassured now. I went for the ECG this afternoon and all went well. I will get back when I know more.

Cheers

Carol

Rachie
Member

Re: Heceptin side effects?

Hi Carol
Strangely after number twelve i developed similar symptoms as you, i went to the docs after two weeks and she prescibed some antibiotics which cleared up the sore throat but still have the terrible aching joints and have been so glad its school hols so i could sleep in as so tired. At herceptin No.13 I mentioned this and he felt i had probably just had a virus and with all the treatment i have had my immune system is probably low and so hard to shake things off.
I had a DIEP recon on the 14th June so my Onc also thought i was still recovering from this.
I have just had No 15 and still feel headachy, tired extremely aching joints i feel 90 (only 38) I am also wondering if it could be effects of the Tamoxfen.
Please let me know how you get on.
Rachel

cb102
Member

Heceptin side effects?

Hi all

I had my 13th Herceptin last Thursday and was quite surprised by the reaction I have experienced since.

With an hour of infusion I felt dizzy and sick. Friday I was tired and achy but still went to work, that's so me!
Over the weekend I felt fatigued, headachy and my joints were painful. I began to feel that I had been given the wrong drugs ( I have treatment at home) so I dug out the rubbish they gave me to put in the bin. I checked the boxes and they did say herceptin so that was a relief.
I decided to phone the nurses today and they have arranged for me to go to the onc clinic tomorrow for a review because they said it is unusual to have side effects after so many previous treatments. I am going for an ECG this afternoon.
I wasn't too worried until they started to arrange all this so quickly.

Has anyone else experienced side effects after several treatments?

Cheers

Carol