To all ladies who have received or are currently receiving herceptin -
I still have 15 more cycles of herceptin to go, I finish in November this year.
My boss would like me to give her an approximate idea of when I will be returning to work. I feel I cannot decide this at the moment as the side effects I have been having have affected my every day life and I don’t feel up to work at the moment.
Did anyone manage to return to work during herceptin treatment? And if so, at what stage of treatment?
Also, how long can you apply for SSP? Can the doctor sign me off until treatment is finished if I don’t feel fit enough to return during treatment?
I worked all through treatment - chemo, rads, & herceptin.
I had Herceptin from March 2011 to February 2012. It was a bit different for me in that I wasn’t working when I was diagnosed so I did my chemo and surgery and rads whilst not working. I therefore had to make sure I was fit enough to start a new job, commute into London and work full time when I went back. I started my new job in August 2012 which was about Herceptin number 7/8 and worked throughout. On Herceptin days I would get the train into London, go across to Harley Street, have the infusion and then go back across to the City to work and usually be in work for about 10.30.
If I had had an existing job I would probably have gone back a lot earlier on a phased return, but was erring on the side of caution. I had days when I felt tired but you just work through it. I would be very surprised if you couldn’t go back to work before November. Try it and see how you go, until you do you won’t know for sure.
Hiya,
Ditto with Roadrunner, worked all through Chemo and Rads and am just about to have 11th Herceptin tomorrow and to date no major SE’s xxxx
Hi Cheeko
I did not work through treatment as chemo made me really tired and brain dead, I need my brain to work for what I do. I started my Herceptin as I was starting radiotherapy in August and I went back to work on a phased return mid October. I am still not at full hours but am increasing slowly, I currently work just under 30 hrs a week and although tired at the end of the week it was good to get back to some form of normality.
You say you are suffering side effects from the Herceptin, do I take it you are not on homrone treatment as that can also give lots of SEs as you will be able to see from the Hormone threads. Also a lot depends on what your job entails.
Good luck in your decision, I think statutory sick pay ends after 6 months but I might be wrong.
I went back to work after my second Herceptin, on a phased return. I didn’t work during chemo and radiotherapy.
All the best
Anne
Hi cheeko, I didn’t have to have Herceptin. I didn’t work through treatment was bloody really ill on chemo and didn’t feel up to going back during rads. Don’t feel bad about not returning to work yet if you don’t feel up to it, we are all different. I had nearly a year off. I can’t remember accuratly when my pay from work stopped as it was over 5 years ago now but when it did I got SSP until I returned to work. This probably hasn’t helped much lol. At least this will go to the top of the page now and maybe someone else can help.
best wishes Melxx
Hi cheeko.
Im an oncology staff nurse at the hospital where I had my treatment. There was no way I could work! Looking after people with cancer, whilst I was being treated for cancer?! No way!! Plus, for 7-10 days after chemo, especially Taxotere, there was no way I physically could have worked!!
However, I went onto half pay after 6 months, and claimed some benefit I was entitled to. But after another 6 months, I was on no pay at all. Only the benefit. So cancer or no cancer, I had to go back to work.
it was very difficult initially, both physically and emotionally. But eventually I got back into it, and love it! I’ve dropped my hours and only do 3 days now My employer gave me every 3rd Friday afternoon off to have my Herceptin at home. I never had any problems with side effects from Herceptin.
Everyones different. You go back when you’re ready. But unfortunately, money plays a big part in the decision!! Plus, getting back to work, when you feel physically able,could be a really good thing. It gives you some structure back to your life. And it’s a Big distraction!
Hi cheeko, Im not in your position as have been self employed for yrs so was fortuneate enough to decide whether i could work or not depending on how bad the treatments were affecting me, i didnt have a boss to answer too, and my hubby, if he had his way would have def preferred me NOT to work while going through cancer treatment.
Chemo for me was HELL (Twice), Rads were a doddle, just time comsuming traveling to the hospital everyday,Hormone Therapies wrere/are a doddle (for me anyway) ,Herceptin which im still on (8 to go) is not SE free as some people would say ( not for everyone anyway) personaly i get very breathless and have regular coughing fits where i feel i cant breath !! horrible ,even climbing any stairs has me gasping for breath.
I always remember when i first started chemo 5 yrs back, the first thing the nurse told me was some people have very few SES on cancer treatments and some even manage to work, whilst others are not so lucky and can be realy very ill on treatments ,noone knows how all the different cancer treatments will affect them till they have them. All i would say to you, is dont feel PRESURED to return to work untill your ready unless money is a real issue, look after you ,and be kind to your body, going back too soon will cause you more probs in the long run especialy if you do not feel well enough or up to it, someone once said to me “when im lying on my death bed i certainly wont be wishing id worked more” il be wishing i took better care of myself and spent more time with my family!
Am not sure about SSP as wasnt entiltled to it being self employed . so realy not sure how long it is paid for , also not sure if your GP can sign you off untill the end of treatment, i think it is a “Fit note” these days rather than a Sick Note, so it will proberly be up to your GP and how understanding he is to your situation and the SEs you are having.
Realy sorry to hear you are still struggleing and hope things improve for you very soon, try not to worry to much about other people being able to keep working throughout treatments, good for them, they are not you ,and dont have your SEs so dont feel like you do!
Bosses and the general public nowadays are unsympathetic to the seriousness of breast cancer and its horrendous treatments, proberly because people tend to try and plod on and be superwoman sometimes, some people wont have a choice unfortunealy especialy if money is very tight, however at the end of the day money cannot buy your health .
Best of luck with the rest of your treatments cheeko , if you realy do not feel ready yet to return to work i would have a chat with your onc aswell who will be awear of your SEs and how they are affecting your life ,he would also be able to issue you with a “not fit for work” note if needed , realy hope you will start to feel much better very soon.
Linda x 
Thank you everyone for your comments. I will just have to see how things go.
I was advised not to work during chemo for risk of infection (I am a nursery nurse working with babies up to 1 yr old). I actually had minimal problems during chemo and felt quite well throughout most of it and feel I could have been fit enough to work then. I am due to start radiotherapy next week.
But after just 3 cycles of Herceptin I have been struggling, I am definitely finding it worse than chemo. The 2 weeks after infusion I just feel very rough, no energy at all and simple household chores can wipe me out very quickly. I also suffer from stiff and achey legs the first 2 weeks and find walking a short distance a struggle. I seem to only have 5 - 7 days before the next infusion that I feel a bit better, not 100% but more able to get on with things. Then it starts all over again.
I seem to be the opposite from most in the way that I found chemo relatively easy and finding Herceptin a struggle. I am definitely not ready for work yet, I don’t even think I will ever be fit enough to go back to working with babies. When the time comes that I feel able to go back to work, I think I may have to look for another job, something less physical.
I am lucky that I am under no pressure from my partner to go back to work, so maybe I will just have to ride this out and try to get well again and stop putting myself under pressure!
Thanks again to everyone for their comments and advice. I do sometimes feel alone in this journey, I tend not to want to worry family and friends with my worries.
Hi again cheeko, quite a few of the ladies on here have/are struggling with Herceptin so you are definately not alone. there is another thread on here called “Herceptin SEs Quick poll” where other ladies have listed their SEs also, herceptin is not side effect free for everyone ,and it is isolateing when others dont understand what you are going through. This is the thread if you havent already read it, its not easy any of this cancer malarky but do keep comeing on here for some help and support there will always be others who can relate to what your going through and will be able to offer some help even if only a listening ear, it realy does help sometimes just knowing your not alone.
http://www.breastcancercare.org.uk/community/forums/herceptin-side-effects-quick-poll
Linda
Thanks cornishgirl, it does make you feel slightly better to know that you’re not alone, although I obviously don’t wish this on anyone. It’s also frustrating when everyone assumes that once you are past the chemo you are past the worse, which really isn’t the case for me. It seems that most sail through the Herceptin stage. Thanks for the link, I’m quite new on here and haven’t come across this yet so it should be really helpful in answering my questions.
Thanks again.
Hi Cheeko,
As others have said, everyone is different. I had chemo, surgery (mx and all lymp nodes removed on left side) and rads, finished 20 rads just before Xmas and managed to carry on working through most of it with a few days off after each chemo, 10 days after surgery and working part days during rads. I got off lightly with chemo side effects and found rads the worst. I am halfway through Herceptin and not having any particular side effects from it. My job is mainly desk based and I can do most of it from home so it’s not as tiring as a job where you are on your feet all day.
If you are feeling so rubbish would it be worth having a word with your doctor or hospital, or asking for a blood test just to check you aren’t anemic or anything?
Squeakymouse xx
cheeko I have similar side effects from herceptin. I started on herceptin along with chemo in May last year and couldn’t work through that (high risk of infection in my job as well as other complicating medical problems) At the time I put the way I felt down to the chemo. I went back to work 3 months after my last chemo while still having herceptin (and Zometa) every 3 weeks. I find the week or so after treatment tough. I have the same aching stiff legs, sore joints and a fluey feeling, I have no energy for even the simplest tasks. Sometimes I think I felt better on chemo. You are definitely not alone. Don’t measure yourself against others, our bodies are all different. We just have to cope as best we can and decide what is right for us at the time.
Thanks everyone for all your comments.
I think I’m just putting myself under too much pressure to try and get back to normal, if I did go back to work soon it would probably be a mistake and I’d end up being signed off again. Just into my second week of rads so will need to recover from that then see if I manage any better with the herceptin every 3 weeks. My partner would rather I waited until all treatment is over before thinking about work again so I have no pressure there.
juraselkie stated it perfectly. Take the time to recoup. Ignore any doctors that say others work full time you can too. They profit if you have a recurrance from going back too soon. It wasn’t until I stumbled in the lobby I got sent to a neurologist who concluded a wheel chair is the solution (no, I’m not taking their advice). I have no idea why doctors cannot take the time to read the forums like this and believe my issues are not new and are shared by others.
Here is a question, if chemo was easier than herceptin for some folks like me (herceptin alone sessions have legs, arms too stiff and painful to function) … and herceptin at same dose was in tandum with chemo … then why is herceptin at same dosage an issue for folks like me but wasn’t when it was part of chemo (TCH)? What other medicine should we be adding to the herceptin sessions that was included in the chemo sessions that could solve the herceptin SE’s? My chemo sessions were Dexamethasone (Dacadron), Granistron, Docetaxel (Taxotere), Carboplatin, Herceptin, Fosaprepitant (emend), Benadryl (due to reaction to taxatere)
As herceptin has to be infused every 3 weeks what happens if you have a holiday booked can you miss one or is it a big no no? DH is 60 in July and we can’t do anthing this summer due to chemo and surgery but we are hoping to have something to look forward to In April, a cruise! I can’t start herceptin until after surgery as I have a heart proble caused by chemo drugs. I think I was told it would be 18 rounds of herceptin.
Take all the time you need and tell your employer that you can’t answer them at this point. As the weeks went on while under Herceptin treatment, my breathing got so labour intensive that they thought they were going to have to intibate me. I finished in January 2013 and as I write this I have had to go back on drugs to help me deal with the shortness of breath, dry coughing and chest tightness. Although I came off the Hecepting with only 5 treatments to go due to major shortness of breath for a few months, I went back on it again to finish off my treatment. Then I remained on meds for another year plus to deal with the lung issues. I finally came off everything in September/October of 2014 and today, February 2015, I am back on the meds and waiting to see the Onc and Respirologist. Don’t be so quick to return to work because it is very difficult to take time if things go down a different route. It is time to take care of YOU - good luck with all 