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
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
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
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?
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
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
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
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.
Best Wishes
Hazel.xx
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
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.
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.
Hello All,
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 .
Hi Linda
I have just had herceptin 8 this week . I am also on tamoxifen. I feel like the pains in my feet legs knees and hands are getting worse. Not sure what exactly is the culprit. My nurse thinks it’s still side effects of the chemo doxatel. I feel like a 90 year old. I am 47. If I crouch down I cannot get back up again without help. I am trying to keep active but not noticed any improvements as yet. I have also been off work for 12 months now. But it is still early days really after all the surgery and treatments you need to give your self time to recover. Everyone is different so take your time . Your health comes first.
Not sure if you have contacted macmillan. They can help you apply for benifets such as esa and pip. Well worth at least looking into and can take the pressure off you returning too early.
Take care
V xx
Hi everyone,
Aine - I’m so glad you posted this although I’m sorry to hear that you had a rough week and are suffering side effects. I’m feeling bloody awful today and it’s my own fault. I’ve done far too much this week, particularly on Wednesday and even more so yesterday and I am paying the price big time today and will probably do so for the next few days. Like you, I also have an iffy stomach and have diarrhoea most mornings and up too 2 or 3 times a day. I’m sick to the back teeth of my numb fingers and toes and to be honest I’ve resigned myself to the fact that they will probably never recover from the chemo damage. As for your ESA, I would definitely recommend getting the help of Macmillan, you have probably sent the form away by now and I don’t want to dishearten you but by the sounds of your “help” from you GP, it may well be unsuccessful. However, many are and then are successful after appeal. I strongly recommend using Macmillan if this is the case, they have a dedicated benefits team, I’m sure there will be one near you, if not it’s worth travelling as they are very experienced in this field. Have you also though about applying for PIP? Again, please do not fill out the form without any help as it is likely to be unsuccessful without the help of a specialised organisation such as Macmillan. I have not used Macmillan as prior to my cancer diagnosis I was already receiving ESA and DLA for my mental health conditions but I have heard great things about them. They have a dedicated benefits team in my local cancer hospital.
Running Free - Congratulations on finishing your herceptin! A huge thanks for your post and for giving us hope that the side effects will start to disappear soon after we finish. I really needed to hear that right now. Hope you continue to improve as the weeks go by.
OAD - I completely agree with you regarding the downplaying of herceptin side effects and I am finding that they are cumulative. I was speaking to a woman in my Moving Forward course only yesterday who has had 17 herceptin and she was saying exactly the same thing. I too have learned the hard way and from now on will learn from this and will listen to by body and learn to pace myself. I was warned to pace myself but I’m impatient and not very good at following rules so it’s my own fault but lesson learned!
Best wishes to you all and please keep in touch.
Love Hazel. xx
Aine - Delighted to share bowel habits with you! :smileylol:
I finished chemo in September, had rads in October last year. So, 7 months on from chemo I expected more improvement with regard to the neuropathy. I’m hoping for some improvement after the herceptin is finished but I’m not overally optimistic to be honest. Hope you’re not too tired today after your painting. I’m planning to gut the house tomorrow but I think I’ll limit it to 2 hours max, problem is I tend to do housework less often then really gut it when I do it, to the point of sweating etc. Also, once I start I find it hard to stop. I must be strict with myself though, 2 hours it definitely is :smileyfrustrated: Oh, I’ve had 13 herceptin so far.
Running Free - Well done on running 5K! Good for you. I’m sick of explaining herceptin to people full stop! As far as everyone is concerned my active treatment is well behind me and I should be back to normal now. I give up, mostly I just smile (grimace) and say “Yeah, I’m fine thanks”.
Blueash, you seem to be getting off lightly with the herceptin side effects, lucky you.
Take care everyone. xx
Hello, after going through chemo, mastectomy and radiotherapy I am now having herceptin every three weeks as I am her2pos. Herceptin messes with my emotions, I have been tracking it and about 5-7 days after my injection I get very depressed angry and tearful, it arrives without warning and then goes, but when I am experiencing it it is so real. If anyone else is feeling this I send you a hug you are not alone.
Hi Dizzytalons. I was exactly like you ther first few days of letrozole and was going to come off it as i felt so bad - i could barely walk and felt so utterly down!! I was encouraged to persevere and 3 months on i still.have aching feet and weak knees but not as bad as they were after those first few days. I find walking helps and keeping active. I take loratadine antihistamine each day and also high5zero rehydration tablets, which you mix with 750mls of water and drink. These are helping me to not be dehydrated which can make the aches worse.
I have had 11 of 18 herceptin now and do get the upset tummies and complete knackerdness when i just have to give in and rest but on the whole i am doing ok and ploughing on!
Today is my first day back at work for a year!
Hope you feel better soon x
Hi.
I have not had too many problems with Herceptin so far, but I postponed taking Letrozole until now and that is already giving me side effects after just four days. It may be the Tamoxifen giving you joint pain and not the Herceptin. It’s good to have somewhere you can have a moan now and then.
Good luck
Sue
Hi. Just waiting for my results and looking into Herceptin . Can anyone let me know how they receive their herceptin, drip or injection and how often you have it and how the it was decided whether you had injection or drip. Thanks. Abi.
I’m on my second last herceptin injection this wednesday thank God. I have found ive had acid and wind and upper abdominal aches all the way through even though doctors say it’s not from herceptin. Did anyone else have this? I’m hoping they will subside after treatment ends!!!