Well I've lost track of how many I've had now, must be about 11. I am with you Hazel, I expected to feel a lot better by now! It's interesting that the aches and pains are better with the infusions. I don't think infusions are an option for me. I have a lot of headaches and have had a few infections but not in my sinuses.
Are you still having chemo alongside your herceptin?
I had my 10th herceptin today, which was the 3rd by infusion. See my posts below. I think the nurses would prefer me to have the injection as it's quicker and easier for them but my lovely oncologist suggested I continue to carry on with the infusions. So far so good regarding veins, they've found one first time all three infusions.
I have actually noticed quite a signifcant decrease in the pain in my hips and legs since switching to the infusion. I am however still having side effects, diarrohea and really bad sinusitis which is causing awful headaches, insomnia and increased anxiety and depression. I suffered from existing anxiety and depression beforehand but the herceptin seems to be exacerbating things.
I expected to be feeling a lot better by now if I'm honest. I'm getting pretty fed up with it all. I'm just taking each herceptin one at a time. My oncologist said that the first 9 were the most important so as far as I'm concerned each one I have after that is a "bonus".
Good luck with your Oncologist appointment. Let us know how you get on.
I am fine thanks Hazel. If I stop taking the claritin the bones and muscles let me know! I am not in agony or anything but I have an awareness of discomfort somewhere in the background. In other words not 100% right but nothing I have to go and get tablets for. So I am taking the claritin and on the worst days I take a couple of Neurofen.
My aches seem to come on about mid way through the three weeks and last for about 4 or 5 days. I always sleep like a log but on those nights I sometimes feel on the edge of a deep sleep.
My Herceptin has been postponed 3 times and will be again twice more!
The first time there was an issue with my heart scan and the nurse wanted me to see the consultant again, I did and it was all OK. The was a mix up with some paperwork. The next time my blood counts wee too low for chemo and they would not do the Herceptin either. My blood counts were too low again so ditto.
I have mine on a Friday and am due on Good Friday so I said could I have it on the Thursday and they said no so I have to have it the following Friday. Oh and I worked out when it would be good for me to go away for a week in July but it has been messed up now due to the previous postponements so I will be havibg that one a week later as well. They don't seem to mind plus I am getting the injection and you either have it or you don't, they can't reduce the dose.
You are right. I had a different nurse and we were chatting so I forgot to pay attention to the time - I think she did too.
I will defo ask for it to be administered sloooowly next time!
As I said I was limping badly all day with the pain.
It has improved a lot over the past 3 days and I dont feel as sore and achy as the previous 4th injection - hope Im not speaking too soon.
I have to ask for my next injection to be postphoned from a Friday to the Monday - that day my father is getting an award and it will be live
on Irish tv so I have to be there for a great family occasion!
Has anyone else had to postphone their Herceptin injection? Has there been any problem doing this?
I would be really interested.
Emma that is really awful. You should complain.
I had my 5th one yesterday and I think she did it too quickly too.
My leg was so sore that I was limping badly all evening.
Its still very sore today but I can walk almost normally.
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.
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.
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?
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
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
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!
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
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
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
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
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.
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?
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.
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.
Hello Sharka and welcome 🙂
I have been on herceptin for 10 years now and have never heard of a reaction like this. Has your oncologist sent you for any scans to see if there is a reason for this happening? Do tell us a bit more about your breast cancer diagnosis and if you are on any other treatments like tamoxifen as that can often cause joint pains. One of the things I hate about cancer is the way we have to question every ache and pain we get in case it is being caused by the cancer or by the treatments, or just part of every day wear and tear!
Hi Littlemissacti. You are most welcome, I wasn't sure if that is appropriate on here, but I really felt for you.
Wow, that is busy! The cruise sounds amazing. What do you do for work?
So, my appointment yesterday was good. My Oncologist is going to switch me back to IV herceptin after my next sub cut one which is on Tuesday. He was very interested to hear that there are a number of people who think IV herceptin carries less side effects. I will need the loading dose again which is a bit of a nuisance but worth it to see if I feel better on it. He also thinks I will end up on Tamoxifen for life, there are currently trials that he thinks will indicate that is the best treatment. I have a long term spinal problem which is more painful at the moment, so I need an MRI to rule out anything suspicious. I'm not worried by that, it doesn't feel like there is anything new. N x x
Good for you, I take my hat off to you for not letting the fatigue beat you. If you enjoy the challenge, and the satisfaction after you have completed a run, I think it's probably worth it. I don't know if a virtual hug is appropriate here but my heart goes out to you re the crying. It's bloody awful, this cancer business. X
Aw, my girls have definitely been my drive to get through this. But yes, I'm bored now, I want normal!
Thank you for that, it really does help to know other people are going through it too. I think that is fascinating about the iv versus subcutaneous. I am seeing my Oncologist on Thurs, I am definitely going ask him about that. How are you feeling now you are having a break? x
Do you know what, Mummycrow, that was me in May exactly! My tummy was gigantic, I had the loose bowels/ constipation / wind thing, one boob and had put on a ton of weight too. Gorgeous! I promise you, it will all settle down. You could ask for some water retention tablets to get rid of the excess fluid Dosetaxol has given you and that will help. My weight is shifting slowly as my energy levels come back in. Do you have children demanding your attention too?