Herceptin = 'Flippin awful, anyone else?

[haz25a]

Hi OAD

Nice to hear from you.

Interesting that you also suffer a lot of headaches. I'm positive my headaches are a direct result of my sinus problems and my GP agrees. He referred me to ENT today but not sure what they can do really?

Yep, leg and hip pain definitely improved since switching from injections to infusion.

Last LVEF was 65% and bloods ok apparently so I'll just keep taking them one at a time and see how far I get.

Still got neuropathy in fingers and feet, hoping that might improve once I stop herceptin but who knows?

Take care.

Hazel.xx

[On a diversion]

Hi,

 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. 

X

[Tanglewood76]

Hi Hazel,
Thank you for responding to my post.
I finished chemotherapy in November & started Herceptin in December. I'm still feeling the side effects of the chemotherapy tiredness & lacking energy, I'm very emotional too!
Regards,
Alison

[haz25a]

Hi Tanglewood

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.

Best Wishes

Hazel.x

[Tanglewood76]

Hi everyone I'm new to this site and only stumbled upon it via Google search about painful Herceptin injections.
I've read with interest everyone's experience.
I've just had my 5th injection today which was another painful one! I saw my oncologist after number 4 as it hurt the whole time it was being administered and it took 2 nurses to give. My oncologist recommended that I lie down on a bed and that the Herceptin was out of the fridge for at least an hour before use. Today after following these recommendations it still hurt, when I mentioned to the nurse that after today I'd prefer an infusion she dismissed it and said I'd be fine with injection, which I'm not happy about and I'll be contacting the oncologist on Monday.
I too suffer painful joints and heavy legs for 7-10 days after the Herceptin, anti-inflamtories don't help, it's odd as it only effects my hips, legs & feet!
Take care & regards to you all,
Alison

[blueash]

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.

[haz25a]

Emma and Aine,

Sorry to hear you're having problems with your herceptin injections. My story is on the "How do have yours??" thread but basically after having local reaction in both of my thighs which is still slightly evident, I've had my last two (8th & 9th) by infusion. The same way you get your chemo. It is given over 30 mins, 45 -50 mins if you include the saline flush before and after. I actually prefer having it this way now and will continue to do so until I have completed all 18 (heart scans permitting). The overall time spent at the hospital is no different for me than having the injection due to waiting times. I think the pain in my legs is a bit less too. My oncologist is happy for me to continue my herceptin by infusion although the nurses are keen to get me back on injections due to the lack of chairs in the chemo suite, it's just so very busy but I think I will insist on having it by infusion.

Regards "missing one", like Blueash, mine was also stopped for around 5 weeks due to a drop in heart function, changed my muga scans to echo scans and so far they have been fine. Had one yesterday so fingers crossed it's ok.

I've had 9 and I'm just taking each one at a time now and see how I go. I just think "That's another one under my belt" as I have each one.

Blueash, hope you're well.

Best Wishes everyone.

Hazel.x

[blueash]

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.

[Aine]

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.

Aine xx

[Emma111]

Sorry to hear you had a bad one this week too. Think we both need to say at our next one we need it done very slowly. The pain was awful and my leg is still a blotchy mess! Think I may even ask not to have that nurse again! Hope your sixth is better for you x

[Aine]

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.

[Emma111]

I had my 9th herceptin injection yesteady and it was awful. Usually they administer it over 5 mins but yest, assuming they were in a hurry, it was administerd over 30 seconds. Was agony and then I passed out! Woke up on a bed connected to all the machines and had to stay for ages to make sure I was ok. Anyone else had this reaction when it has been administered quickly?

[Aine]

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 luck

A

[Terriannes90]

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

[Aine]

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?

[On a diversion]

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 

[Runningfree]

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

[Terriannes90]

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

[OldDawn63]

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!

[Aine]

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

[Sue54]

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

[Sue54]

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

[Tracey4]

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

[Crochet girl]

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. 

[Chrissie10]

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

[Crochet girl]

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? 

[June_BCC]

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

[Chrissie10]

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.

[Sharka1]

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!

[SamLee]

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

[Crochet girl]

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 .

[Sharka1]

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

[Crochet girl]

Hi Sharka1. I have found Herceptin very tough going but I haven't had the problems you have had with your legs giving way. I have lots of joint pain, particularly my knees, feet and Hips. I swapped back to IV herceptin from the subcutaneous delivery method and have found it has less side effects, how do you have it? I think you need to keep on at your Oncology team to investigate your issues. I have been surprised by how long the chemotherapy side effects last after you finish with it - did you have FEC-T?

[Sharka1]

Hi I was diagnosed with breast cancer last Christmas I had a lump which was removed along with some limphnodes. I was told that it had been caught early but was the most aggressive type. I have not started to take my tomoxiphen yet mainly because of the problems I have been experiencing, and now have been told I must.
The problem with my legs seems to be getting worse but they seem to be unsure as to why this is happening. Could be a side affect of the chemo still! I have resently had a bone scan and that was fine and each time they have done obs which they were happy with. My heart has been affected by the Herseptine but this has not hot any worse. I am due to see the heart team soon for a more in depth look.
I cannot pretend not to be concerned by this as even the nurses have never seen anything like it before!!??

A little worried Sharka1

[dawnhc]

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!

Dawn

xx

[Sharka1]

Hi
I am new to the forum but would love to hear from anyone who is experiencing their legs giving way and being unable to stand after having Herseptin? This has happened to me on both my sixth and seventh treatment which I had yesterday. Very upsetting as no one seems to know why this keeps happening. I am ok after a nights rests but legs not great. Also have bad joint pain when sometimes it is difficult to walk. It has been suggested that that is a side effect from chemo which I finished at the end of June.
Would love any comments Sharka1

[Crochet girl]

I hope so too, Littlemissacti. I'm ok, had to have a MRI scan yesterday to check my back pain is nothing sinister, I hurt it years ago and it constantly bothers me but the physio won't treat it untill secondaries have been ruled out. I am just getting used to the fact that whenever you have a medical ailment, everyone wants to rule out cancer first. Other than that I'm ok, just hot and tired (Tamoxifen, I thank you!) I have herceptin on Tuesday with iv infusion so I will be interested to see if I feel any less side effects with it.

[Littlemissacti]

I'm really not sure if there is anything that can be done to help. I'm hoping it will go eventually. I'll keep you updated after seeing my GP. How are you feeling now Crochetgirl?

[Crochet girl]

No, it's not daft, I think it's better to know what the cause is of something, not all this wishy-washy "it might be a side effect". Do let me know how you get on with the GP - can they do anything for it?

[Littlemissacti]

Only found out today, well it appears my CPK blood levels are raised which can cause muscle aches and fatigue. Need to visit my GP now to discuss further and what happens next. Had a CT scan last week and Echo heart scan next Thursday. As daft as it sounds I'm pleased to have a reason why.

[Littlemissacti]

Thank you for the update re your oncologist visit. Yes it is a nuisance having the loading dose in hospital for 6 hours but I try to view it positively and enjoy the rest.
I'm looking forward to seeing my oncologist on Wednesday.
I work as a Day centre officer with older adults. Your life must be busy with young children too.
I ran 13.1 miles today. I'm pushing myself as I have a place in the Berlin marathon at the end of September. Really not sure I'm going to manage it the way my legs are at the minute. Still I will give it a go.
Once the marathon is over I will just run shorter distances. I had such a good running year last year so it's been difficult to suddenly deteriorate so drastically!
I'm so looking forward to the holiday.
Good luck with your treatment tomorrow. Do you have it in hospital or at home?
J x

[Crochet girl]

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 

[Littlemissacti]

Thanks so much for the virtual hug. Life is rather hectic at the minute, I'm having my bathroom renovated, I'm going on a Norwegian cruise next weekend and I've got a job interview next Friday! I'm quite likely to be made redundant in the next 6 months so I've started job hunting.
How did your appt go today? I see my oncologist next Wednesday and I'm looking forward to discussing the subcutaneous Herceptin.
Xx

[Crochet girl]

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 

[Littlemissacti]

Hi again, I think I'm regaining some stamina. I can now run 10 miles but it is agony during the last couple of miles and wipes me out for the rest of the day. Still undecided if it's worth it but I'm determined not to let it get the better of me, but it is hard. I've cried more during the past couple of months than I have for 3 years. Like you say you just want life to return to normal. I'll be interested to hear what your oncologist has to say. x

[Crochet girl]

Aw, my girls have definitely been my drive to get through this. But yes, I'm bored now, I want normal! 

[Crochet girl]

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 

[Mummycrow]

Hi, yer I've got two daughters, 16,14, both great kids who have helped me so much and older one has been like a little nurse to me.
So fed up with it all now n just want life back n normal body!! X

[Littlemissacti]

Hello crochetgirl, sorry to hear you are suffering. As others have mentioned it could be the Tamoxifen but I wanted to share my experience. I'd been on IV Herceptin for nearly 3 years ( maintenance as I've had BC twice, 2005,2011) but at the end of April I was swapped to Subcutaneous and I've been fatigued and my legs are heavy and ache! I ran the London marathon in April without too many problems, I've since struggled to run 4 miles at times. I decided to have a break with a view to going back on IV if my oncologist agrees at the end of Aug. I've also heard from a nurse that many new patients on the subcutaneous are feeling exhausted.
Not sure if that helps but sometimes it's good to know you are not alone and what you are experiencing is real.
Do hope things improve for you x

[Crochet girl]

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?