Member
Posts: 203
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Thanks for the advice about Herceptin.  I will persevere then and get the full dose next Friday.

 

Aw thats awful about your reaction to Ondansatron - I know what you mean.  I gave up on all anti-sickness stuff because the SEs were just as bad as you had.  Looking back I should have kept on asking for help and some ladies told me it took months before they got the right med for them. 

I had to sit outside a lot or sit at an open window with lots of layers on.  The fresh air really helped. I went for short walks which stopped the nausea for a while.  Also I ate crackers and pate for a snack!  And drank wine in the evening!  It took my mind off it for a while.  Also lying flat helped so being in bed was good.  And I drank lots of water.  If my stomach was empty the nausea was much worse.  I lost 1 1/2 stone and am now the thinnest I have been in 20 years.  Not much comfort to you now but it is a positive.

 

So tell your doc how you feel.  Ondansatron is very popular but there are other meds.  Ask for them.

Good luckWoman Happy

A

Member
Posts: 81
Registered: ‎06-08-2016

Re: Herceptin = 'Flippin awful, anyone else?

Aine thanks for the reply.

Have tried everything you said and didn't help. I got odansetron from GP on Friday which really seemed to take nausea away BUT the way it made me feel all day yesterday was frightening! So back to square one!

You said you are going to ask for a reduction in herceptin because of achy muscles but hang on in there. I had same chemo as you and finished in September and I ached so badly I couldn't ever imagine feeling better but it gradually eased off over about 3 months and now just the odd twinge. So it might not be se's of herceptin but still from the bloody awful taxodere.

Lots of love
Terri xx
Member
Posts: 203
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Terri - Im so sorry you are having such bad nausea.

I was completely crippled with it during the chemo (3 FEC, 3 T) but have hardly any now (3 weeks post chemo) and on Herceptin every 3 weeks.

My only advice is how I tried to deal with it...

I ate every 2 hours but very small portions.

I found tomato soup and bread or any soup really settled my stomach for a while.

I dunked a couple of biscuits in tea and that really helped.

Cyclizine made me a zombie so stopped that.  Meta and Ondansatron didnt help much and gave me constipation and cramps.

So many people told me they got their nausea under control eventually by trying all the anti sickness stuff so dont give up and discuss it with your medical team.  Surely they can do something for you.

Good luck

 

The bad muscle aching has eased off a bit now on day 14 but I am exercising a little every day and that helps I think.  Am going to ask for 80% Herceptin next week.  I couldnt put up with this for a year.

Anyone else done that?

Member
Posts: 372
Registered: ‎13-03-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi,

 

I was very nauseous last time for a couple of days and also throw up a little. I'm about half way through now and don't have any other treatments like tamoxifen xxx 

Member
Posts: 631
Registered: ‎25-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi Terri

I have just had number 15 herceptin on Monday 

I get some nausea ( probably every 5 days or so and fairly mild) but I have always blamed it on the tamoxifen!!

Are you on that as well?

i had some prochlorperazine( stemetil) that dissolves in your mouth left over from chemo ( when I was VERY sick) and I use that as it was the only thing that helped me then

so hope you get sorted with this

cath

xx

Member
Posts: 81
Registered: ‎06-08-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hello everyone

Just reading through all your posts and no one seems to have nausea... am I alone on this side effect? I have had 8/18 injections and the nausea is bloody horrendous 😞 Have tried every home remedy with no luck. Domperidone doesn't touch it so GP gave me cyclizine which didn't do anything except make me drowsy. It is taking over my life and it's all I think about 24/7!!!! Anyone have any suggestions please?

Terri x
Member
Posts: 399
Registered: ‎14-09-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hello again, Aine! I thought I might as well chip in on this thread as well, to say that after 5/18 Herceptins I have not yet had any aches and pains, just the skin problems I mentioned on the September 2016 Starters thread (see also Facial Rash on Herceptin thread). I hope your pains get better now you have started exercising again, and that we don't both become regulars on this thread!

Member
Posts: 203
Registered: ‎08-10-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi there ladies!

I was very interested to read all your messages about Herceptin.

I have just finished chemo and have had 4th H.

I am having very sore achy legs and some achiness in the rest of my muscles too.  I didnt notice during chemo cos I had such bad SE's anyway but now I am very aware of the muscles.  Yes just like I have run a marathon yesterday and its hitting me today!  And everyday!

Its a bit easier to understand now I know its a common enough problem. But I am afraid that it will get worse as the year goes on.  I am going to try to get fit again and went to the gym today for the first time in 8 months!!  I really enjoyed being back in a 'normal' environment and it gave me a mental boost.  I didnt do much - just walked on the running machine but its a start isnt it.  If some of you can manage to run in spite of the achy legs then I will too.  It didnt make any difference to the aches - I didnt notice them while I was exercising but they were back later.  I also had to sleep on the sofa for an hour afterwards.

Thanks for the support

Aine

 

Member
Posts: 25
Registered: ‎11-10-2015

Re: Herceptin = 'Flippin awful, anyone else?

Hi im in your club on 15/18 and feel just terrible from the pains in my bones. They burn so deeply. Get so tired of feeling ill that it makes me feel really ungrateful as im sure it will do me good long term but would just feel so liberated to say stop now. Also effected my teeth by attacking the nerves and basically rotting them so the toothache doesnt help either. Feel as if im falling apart, and like many here the herceptin was talked about as if it would be nothing so kept on thinking i was imaging all of it. To everyone your so brave and i just hope our combined experience will help improve treatment for future generations. Godbless xx

Member
Posts: 25
Registered: ‎11-10-2015

Re: Herceptin = 'Flippin awful, anyone else?

Herceptin is a brilliant drug but the side effects are awful. Im on 14/18 injection and cant move without pain or pick up a mug of tea. Just have to keep thinking about the good its doing. All my love and hope things are improving for you now. X

Member
Posts: 4
Registered: ‎27-06-2016

Re: Herceptin = 'Flippin awful, anyone else?

Hi, I was diagnosed with Herr 2breast cancer in 2013I had an operation then  chemo ,radiotherapy and herceptin whilst taking the perception my legs suddenly became very heavy like lead and extremely painful! I have had numerous amounts of different medication and j still feel awful it has effected my life ! Is there any help out there please tracey x

Member
Posts: 40
Registered: ‎21-07-2014

Re: Herceptin = 'Flippin awful, anyone else?

Thank you, Chrissie10, that's reassuring, and the bone pain is exactly as you describe. I can't take anti-inflammatories which is not ideal as I think they would help. 

Member
Posts: 4
Registered: ‎07-08-2013

Re: Herceptin = 'Flippin awful, anyone else?

Hi Crochetgirl, I didn't have Tamoxifen, just Herceptin. Still feeling stiff and sore in knees, legs. Forgot to add my hands also sore, I think an anti-inflammatory is helping a bit. My niece had HER+ BC just over 5 years ago whilst still in her late 30's, she also had Herceptin and was not surprised when I told her about the joint pain. However she is currently skiing in Canada and regularly runs 7 to 10 miles a few times per week. She said it will eventually wear off. Hope you are feeling better.




Y
Member
Posts: 40
Registered: ‎21-07-2014

Re: Herceptin = 'Flippin awful, anyone else?

Hi Chrissie10, I think the other thing is that in terms of cancer treatment in the UK, Herceptin is relatively new so there aren't vast numbers of people to say "this is the possible  long term side effects of this drug" if you see what I mean. We are only just finding those out, plus people are finding Herceptin harder going than we were originally told they would. Do you take Tamoxifen as well? 

Member
Posts: 3,842
Registered: ‎01-05-2012

Re: Herceptin = 'Flippin awful, anyone else?

Hello  Chrissie10

 

Welcome to the forums. 
Just to let you know we have a helpline should you want any support or practical information, the free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.

 

Best wishes

June, moderator

Member
Posts: 4
Registered: ‎07-08-2013

Re: Herceptin = 'Flippin awful, anyone else?

I finished my 12 month course of Herceptin (jab) last September. Legs still painful, usually stiff but better when I am moving round. Somewhat relieved to read others experiencing same problem and it's nothing more sinister than a side effect. I hope it goes eventually, but if not I figure it's a small price to pay in return of keeping a recurrence at bay.
Member
Posts: 4
Registered: ‎21-10-2014

Re: Herceptin = 'Flippin awful, anyone else?

You are both right. I guess loosing control of my legs has just made me uneasy there's something in the back of my mind that thinks this could become permanent and that is what scares me. I callapsed in work today so embarrassing I wanted the ground to swill ow me up! The aches and pains I can live with it's not knowing if any minute I am going to lose control. Any way enough my moaning!
Member
Posts: 300
Registered: ‎01-05-2012

Re: Herceptin = 'Flippin awful, anyone else?

Hi Sharka1,

I am guessing that as you are only around your 7th Herceptin it is not long since you finished chemo.  I know it is easy to say "don't worry" but I would have thought that your pains are a combination of all the treatment you have had up to now.

I had chemo followed by Herceptin 4 years ago and I got sick and tired of all the medical staff telling me that after chemo Herception was "so easy".  I personally found it quite hard, the joint pains got progressively worse and worse through the 18 treatments. 

By that time I was also back at work full time so the going to hospital for treatment in the morning and then doing a full day at work, by the time I got home I was exhausted.

I would say, don't be hard on yourself, don't push yourself unless you feel up to it, I think that a lot of people assume that once chemo is done then treatment is done.

I didn't take Tamoxifen whilst I was on Herceptin, I couldn't tolerate that as well and basically told my onc to "bog off".  I started taking it when Herceptin was finished, but even then only stuck it for a year before I ditched it due to side effects, but that is another story entirely.

You will get there in the end, but I think that joint pain is played down an awful lot when it comes to treatment.

Take care

S

Member
Posts: 40
Registered: ‎21-07-2014

Re: Herceptin = 'Flippin awful, anyone else?

Hi Sharka1 again :-) It is a horrible business and, like you, I don't moan about to my husband. Kids are incredible aren't they, mine are 8 and 4 and are relatively unscathed by it. It is such a long time to be ill and I think anyone who gets through is amazing. I can understand you being worried about your legs, but it all does so many wierd things to us, don't stop telling them, even if it's just when you have it through your pic. X .
Member
Posts: 4
Registered: ‎21-10-2014

Re: Herceptin = 'Flippin awful, anyone else?

Hi

I have mine through a pik line in my arm, and yes I did have FEC-T. I am seeing a temporary oncologist at present as my usual one is off on leave for six months, but last time I saw him he said he was not going to take me off it and I would just have to get on with it. Today my legs have gone again and seem worse than last time. Any way it's interesting to hear that you also experienced joint pains.
Thank you so much for your reply it's hard sometimes feeling unwell for such a long time. I don't say much to the children or my husband as they have had a lot to deal with this past year. I have been so proud of how they have all dealt with it, ( my son is 8 years old and my daughters 11 and 15 years old).

Thank you again Sharka1