It is so nice to hear that there are other people like me going through this terrible ordeal. My diagnoses is Her 2 positive. Following my surgery last summer, I had 6 rounds of chemo, the last 3 with herceptin (plus a further 15 herceptin at 3 weekly intervals), followed by 23 treatments of radiotherapy, which finished at the end of January . It was during my radiotherapy , that I notice that my left shoulder was becoming stiff and painful . At the time , I thought it was odd , as my radiotherapy was on the rightside. I've had regular echo cardio grams and a bone density scan , which were all normal . My oncologist then started my on Letrozole and calci chew tablets. Within weeks, my muscle and joint pain became a lot worse. This was in my hips , knees , ankles , fingers and both shoulders being the worst. I changed to a different manufacturer as suggested on the forum, and still it was no change . At my route OPA with my oncologist , I mentioned the point and muscle pain and was changed to Exemestane , being told that herceptin had little or no side effects . The pain then got so bad , 10/10 one night that I managed to get an emergency appointment in the morning to see the oncologist, who then told me to stop taking the Exemastane and start Tamoxifen in 2 weeks , to let the drug get out of my system . However , the pain still didn't subside and I was crying so much at my last 3 weekly Herceptin injection , refusing to have the injection , that the chemo nurse got the on call oncologist to see me, who said it wasnt likely to be the injections, but prescribed Tramadol and codeine , for the pain and encoraged me to have the injection . After taking these regular for around a week , the pain was no better , still 10/10 , my lovely GP stated me on Etoricoxib (NSAID). This has helped a little . My dilemma now is , I've now been off work for 11 months , now on half pay and being pressurised to return to work . My pain in now around a 4-5 at rest, with my left and right shoulder pain still being 10/10 at times. My husband , has to help my undress and cut up my food . My head is in a constant state of fuzziness due to the opioids . I am a nurse , working on a very busy surgical ward. This weekend I have gone cold turkey , only taking the NSAID. But, the extensive pain has returned , with me again struggling to climb the stairs and walking at a very slow pace . I am due to have No 11 Herceptin injection tomorrow , which I would like to decline . I haven't yet started on the Tamoxifen . I need to get my life back , I want to/need to go back to work. I feel well and truly stuck. Any ideas or suggestions please ? Thank you for listening .
OAD, Heart scan seemed ok, I'm due herceptin number 13 this Friday so I'll find out before then if anything is amiss. My big toe is still sore but I don't think it's infected. See podiatrist on the 16th May. I'm very sensitive to meds, I have a bad stomach, acid reflux and IBS anyway so antibiotics are not very kind to my stomach, some are better than others. They also seem to "interfere" with my antidepressants, regardless of what antibiotic or antidepressant I am on at the time? How's your back? Mine's still a bit sore. How many herceptin have you had now? I've got my first mammogram and appointment with surgeon on Tuesday morning, I'm a bit nervous. The Moving Forward course is good, nice to meet up with people in the same situation Next week's topics are chemo brain and fatigue. They asked if anyone was interested in attending a Fear of Recurrence course so I've signed up for that in July. Got my hair dyed platinum blonde! Lol! I've always wanted to be that colour but my dark, dry, frizzy hair could never have stood the bleaching process, it's pretty knackered now, even though it's short. I've not quite got the trendy pixie cut I was hoping for but hey ho, it's hair. Really tempted to dye it pastel pink or purple. Think it's because I'll be 49 next month, must be having a mid life crisis (again!)
Take care. xx
Aine, I've started to walk a bit more, even with my sore toe. My legs were a bit sore last night so I must have walked briskly and long enough to do some good. Cut the grass today, took a break halfway through, it's a medium-large size lawn. I used to take my dog to the cemetery too, it's a 2 min walk from my house and I used to take her to the really old part where I could safely let her off the lead for a good run, she was a greyhound.
Forgot to say keep pushing the exercising!!!
I am forcing myself to exercise...gardening or walking the dog or walking...
I am also doing my yoga exercises every day for say half an hour or so.
I am completely convinced that this is what is the most beneficial thing I am doing now......
get up and move!!!!
it is minimising my SE's from Herceptin.....
this lovely weather is perfect for getting out and walking....
...get up and out and why not try those apps that track your steps....my OH does that and he is so delighted with himself!!!!
I am a bit sceptical and just get out and go for a walk...!!!
OMG it isnt rocket surgery!!!!
just go for a walk!!!
doesnt matter where you go .... I take the dog out and go round the local cemetery!!!! And am delighted I am not on one of the tombstones!
Aine x big hugs to those who are struggling...I struggled terribly for 6 months and still have the odd bout of trauma
Yes the courses are definitely worthwhile.
Mostly for the support you get from meeting people in the same situation as yourself which you dont normally encounter when you are at your hospital appointments I feel.
I loved my fatigue workshop course - meeting people from all walks of life who had a similar story to tell as me....we enjoyed ourselves so much and had a great laugh.
It is great to feel you are not alone and not a complete oddball with no hair who is reduced to wearing a dead bird on your head!!!!!
Carpe diem....make the most of today..
Hope the heart scan goes well. I had all sort of problems with infected ingrowing toenails during the winter. Also have problems with antibiotics. I think some of us are much more sensitive to all the medications and treatments!
Really interesting about the change in car too. I still have the back ache etc and am wondering about this.
Totally agree with increasing the exercise slowly and not being hard on ourselves.
Take care xx
Haz - Aw sorry to hear you have a sore toe and back!
That can be very painful - I have had sore backs and I know how awful it is.
By the way - my persistent back problems disappeared when I got a new car!
I had been driving a 17 year old white Audi (which I loved!) but eventually the family refused to get into it and I had to give in and change it!! My very boring Toyota Avensis is a great car and only after a year did I realise that it cured my back problem. And I was the Queen of sore backs!!
Also ......my physio did some back massage called the Bowen Technique...it helped enormously. Nothing too alternative just massage but I would highly recommend asking for it.
Herceptin 9 was ok and I seem to be getting no side effects.
You are much further on than me Haz. How are your SEs now?
I have disgusting black peeling nails (keep dark nail polish on) and numb toes but I think the feeling is coming back in some toes.
Hands are improving a bit more.
I am exercising as much as I can - do a bit and take a break and then find something active to do again. I force myself to take only short breaks (half hour) and I really think this is the key to getting better.
My appetite is still poor - nothing tastes like it used to. Is anyone else like this?
The Fatigue Workshop is good fun - you should all try it. Plenty of laughs. Talks from physios, social workers, therapists, nutritionists, etc and lots of good advice on coping with fatigue.
Be good to yourselves ladies!
Eh, exercising not going too well. BUT, I do have a really good excuse at the moment as I have a rather painful "whitlow" on my big toe AND I've also got a sore back so walking at all is rather painful just now. I saw GP today and have an antibiotic cream and a good old fashioned poultic to try before a course of antibiotics.
I'm due my 12th herceptin on Friday so will check with the nurses tomorrow that it's still ok to have it with this whitlow.
Great to hear you're getting out and about walking in the countryside. There is no doubt it is beneficial, as long as you don't overdo it. Don't think there's much of chance of me overdoing it mind you, even when my toe and back are better. Small baby steps for me. I actually had a plan to set my phone time for 5 mins medium pace, 5 mins fast pace, then 5 mins medium pace again. I just need to put my plan into action and build it up!
Hope everything goes ok tomorrow? with your herceptin.
Hows the exercising going?????
I have done a lot of walking over the Easter weekend with my family. Nearly killed me to force myself to keep up with them but once you are out there its ok and I really impressed myself that I could keep going for ages. Boy does it put you in a good mood to be out enjoying the birds and trees.
Last weeks Fatigue workshop was about food - very interesting - we all brought in a wee snack and shared them out.
The course leaders made us put the food our mouth, not chew it for a while, not swallow for ages and therefore really savoured the taste. It was really interesting.
They said it takes your body 20 minutes to register that you are no longer hungry - so eat sloooowly. Good advice.
Next Herceptin in 2 days time.
My SEs are diminishing, Hands are a lot better. Feet still numb though.
Diarrhoea a little better.
The exercising is helping a lot......
I had massive water retention due to the chemo. My eyes were always streaming, my feet, legs, fingers, wrists, under my chin and tummy were all bloated and puffy. It took about 6 months to go and I am still heavier that I would like to be and don't over eat. I am not a runner but I excercise for about an hour or so on most days.
I will take note and see if the weight shifts once the Herceptin is finished and report back here.
weight has possibly increased by 2 of 3 pounds but I like to run and have done so throughout
that said I have a thicker waist I am sorry to say
hoping this is a temporary thing..... Am also on tamoxifen
dont let that nurse intimidate you......can you speak with your BCN ? Or your oncologist? You have enough on your plate.
ive found a site' medicines.org.uk' it says 2 to 5 mins and has loads of info
Hi Cath, just wondering if you gained weight or had water retention during the injections?
They always set a timer with my injection and take about 4 minutes each time and it has never stung me. I sometimes get a small bruise but that is when they catch a blood vessel and they cannot see those to avoid them. I have had 11 injections so far.
I would report that nurse. If you know that it is supposed to take 3 to 5 minutes then she must know as well.
Lindeloo - I don't think that is any excuse. They are under a lot of pressure at the hospital I go to but it doesn't stop them giving you the time you need. You are sometimes kept waiting, and some patients grumble about that - including me! - but I'd rather wait if it means each person is given enough time to be treated properly.
When I said to the nurse , I thought you should inject slowly for 3-5 minutes , she just said , o well and walked off , they don't seem to have the time at the Lincolnshire hospital I go to , it's very worrying x
Lindieloo - I have had 5 injections so far (the first 3 with chemotherapy were IV so I've had 8/18 in total). The injections are given very slowly and steadily, and usually there is no pain at all. I am not aware of them timing it but I would estimate they take around 3-4 minutes.
Haz25a and OAD - I have had fatigue but can't really say it is Herceptin related. It was at its worst during the latter stages of chemotherapy and for a few weeks after. Since I started exercising it has improved a lot, though I am just coming to the end of my radiotherapy and this is making me tired again. I have slight neuropathy in my fingers but it isn't a serious problem at the moment. Aine is right though, you do have to force yourself to exercise. Don't try to do too much too soon, it is easier if you start slowly and gently and build up.
i have just finished herceptin after 18 jabs
The girls ALWAYS set a timer for 5 minutes
There are a couple of threads somewhere on the forum with lots of variations but I think 5 mins is what the licence recommended ( and always in the thigh if given sub cutaneously)
all the very best with your treatment ( I must say it has gone by pretty quickly for me!)
Hope you don't mind me butting in but I had my 2nd herceptin injection on Monday and they put the whole injection in my thigh in 42 seconds as I was counting and had the huge bee like sting for the whole time, can I ask how long others have theirs in their leg for .
Hi Hazel and Aine,
Really interesting reading your comments, thank you for sharing.
My taste is still affected but I have been told that it's due to the taxotere and might be long term. It never occurs to me that it could be PN.
Take care xx
...forgot to say that the yoga classes at my hospital were just great. This is how I started to exercise during chemo and omg I found them soooo relaxing and therapeutic. I do the exercises every night before bed and they really help with winding me down. Try this and see if it helps you sleep. 'Do yoga with me' on Youtube has been recommended to me.
Hi Haz and the rest of you. Hope you all had a good day!
Haz....I still have neuropathy too (7 Herc done) and yes still on the tip of my tongue which affects my sense of taste a good bit. Nothing tastes like it used to. Hands and feet still very annoying too. My Onc said 50pc of people get better and the other half - well it doesn't cure completely. We will have to wait and see I suppose.
Someone told me that putting your feet up helps with the swelling but I am sure you know that.
I have just started a Fatigue Workshop course (4 thursdays). Week one was a good laugh. We got an aromatherapy stick to sniff when we are tired - smells lovely. We did a bit of relaxation. Some are suffering more than others I realised. I actually nearly fell asleep during the talk and had to go out and stretch in the corridor!! The advice was to try to manage the fatigue by healthy eating, exercise and planning the day so you limit the big highs and bad lows. Next class is about healthy eating I think.
If your hospital offers this course you should think about going. I really enjoy meeting others going through the same as me.
I felt as weak as you up until No 6. I have forced myself to exercise over the past few weeks and I am totally convinced this is how I have turned a corner. I started by taking the dog for a short walk everyday. I walked slowly and yes the stuffy runny nose and running eyes drove me crazy but I still forced myself to walk. It really helps with the sleepless nights.
Now the weather is better I have started gardening. I do a bit and sit down for a half hour rest and do more. I take as many breaks as I need BUT I keep going. I have gone back to the gym and zumba classes.
So.....you HAVE to force yourself to exercise!! You will get better more quickly!! It got rid of my very achy legs. It cheered me up. It is a win win situation.
Try it tomorrow - start easy. Keep going .
Be good to yourselves ladies!!
Hugs Aine x
Congratulations Running Free! I can't wait to finish. If everything goes to plan and I don't miss any I should be finished by the end of August.
Hello Aine and OAD, nice to hear from you.
I've had 11 herceptin now (I think), still getting them by infusion.
OAD, my muscles are still a bit achey in legs and hips but not quite as bad as when I was on the injection. Fingers and toes (and tip of tongue??) still got neuropathy. Ankles, feet, lower legs swelling up more. Feel like I've put on a bit of weight, probably fluid retention. Fatigue is getting worse, I go to bed, toss and turn for ages but feel like I could sleep during the day no problem. Really need to start some gentle exercise, walking or yoga maybe but I'm just so physically and mentally exhausted all the time. If I go out one day, I'm wiped out the next day.
Keep in touch.
Many congratulations Runningfree.
I have ankle and hip/pelvic pain as well as worsening peripheral neuropathy. Seems to take a while for my muscles to get going. Anyone else?
yes kept running although sometimes it has been really hard
but it definitely helps your mind
find the aches,cramps ,sore feet etc tend to go whilst I'm running
well done to you too. Keep going
Congratulations Runningfree!! What a milestone!!!
So you clearly kept running on through sore feet and cramps!
I have started running on the treadmill at the gym. 5 mins jogging 2 mins walking for 3k last thursday. Oh it felt great. It really helped with my leg cramps which have stopped since then. Numb toes too but it didnt stop me.
Keep it up!!!!
today I had my 18th ( and hopefully last!) herceptin. I have felt a lot better on the last few... It's probably psychological but who cares...
still have some SE ( feet,cramps ) but we will see.
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