Has anyone had experience of cancer while on Kesimpta? I have been on it for a year and was diagnosed with cancer last month and had a mastectomy done last week. I stopped the Kesimpta during all this and really do not feel I want to start it again. Trouble is the MS is beginning to feel quite active again and wants to be in charge so need to do something. Just all been too much. I did really well on Tecfidera for ten years and was then changed to Kesimpta because the generic version was intolerable and now have this problem. so difficult to know what to do but feel worried about these drugs now, maybe unfairly.
I’m not on Kesimpta but understand your worry. I think that if I were you I would get an appointment with the Neurologist to discuss further and if necessary explore alternatives
The sad fact is that as the advert says 1 in 2 of us will develop cancer in our lives so it’s totally possible that your cancer had absolutely nothing to do with MS, Kesimpta or Tecfidera. ( my wife in her mid 60s has just completed treatment for endometrial cancer and we are waiting to hear whether a recent CT scan has shown that the surgery, chemo and radiotherapy have been successful).
Thank you so much for your thoughts and I sincerely hope that you and your wife will receive positive news soon after her intensive and difficult cancer treatment.
I know you are right about the awful cancer statistics but it did not stop me questioning whether I did anything wrong and searching for an explanation. The surgeon echoed what you say too but immunosuppressant medication probably does not help.
I suppose it is a question of coming to terms with a lot of things at once and believing and trusting in science. Not always easy.
My Neurologist has offered to discuss this but is keen for me to continue with this drug. Will restart tomorrow to keep the MS under control and hope the rest will right itself.
Thanks @Forum1 and I really do understand your worry. I’ve had MS for around 19 years and until my last MRI in January this year Avonex seemed to be keeping any new lesions from developing. The January MRI revealed one new lesion and my Neurologist is suggesting that I go onto Siponomod which is fine with me except it carries a risk of Basal Cell Carcinoma. Apparently Basal Cell is pretty easy to deal with but the word Carcinoma and cancer has definitely unsettled me.
Unfortunately whatever we do carries risks- I’ve been revisiting the list of potentially serious risks with Avonex one of which is heart failure! Oh the joys of having MS!
I also understand your question about ‘did I do anything wrong ?’ My wife went through a long period of similar questioning and I know from her that it’s hard not to look at everything she has ever done as a possible cause
Do you think it is possible that the worry and stress of your wife’s situation could have affected your MS and resulted in the new lesion?
I have had an awful lot of stress since diagnosis some 16 years ago and this has not helped my condition at all. I also found it quite difficult to adjust to a different drug after being on Tecfidera for ten years. Maybe it won’t be a difficult adjustment for you if you do have to change. Hopefully your MS will also stabilise again if you receive some needed good news about your wife’s condition.
As you say, what a joy it is to have this disease. These drugs seem to have such nasty side effects and risks that it is difficult to know if we are doing the best thing but there is no other choice because it is wrong to give in to it. We just have to remember to be kind to ourselves and remember we can only do our best. My cancer nurse told me it was not my fault but it is hard to believe that but maybe we should not be so hard on ourselves.
Best of luck with everything and hope the year gets better and the news is good.
Hi @Forum1 yes I do think that the stress and anxiety most definitely affected my MS. I mentioned this to my neurologist and he said it will have caused general inflammation and while it’s impossible to know for sure it could have caused the development of a new lesion. It was certainly a long and anxious time from diagnosis, hysterectomy, chemo and immunotherapy a bad reaction to immunotherapy and hospitalisation, then 5 weeks of radiotherapy. A horrible time of feeling unable to help in any way other then being generally helpful and supportive.
I’m guessing that your period of stress won’t have helped you one bit.
Mindfulness/meditation helps but over the last year I’ve been so overwhelmed/preoccupied with worrying etc the mindfulness fell by the wayside. I must start again and this week bought myself some online Beingfulness sessions
What an unpleasant series of events you’ve been through.
I’ve been on Kesimpta for just over two years now, no problems as far as I know.
I’d agree with the points made above that it could just be a coincidence, rather than Kesimpta having any bad effects. But I also think it’s pyschologically hard to accept that when the two things seem to come close together like that.
If it helps, the original clinical trials on Kesimpta go by the names ASCLEPIOS and ALTHIOS. You could read those and see what happened to a whole group of MS patients taking Kesimpta.
At times like this it can help just to place things in the hands of your MS team and oncologists. They know your medical history and it may be easier for them to take an objective view. They should be able to explain to you how they weigh up the pros and cons of whatever they recommend.
I hope can rest and recover: you’ve done well to get this far.
Thank you so much for your very helpful and reassuring reply.
It has indeed been very hard not to question the drug when these events have occurred within such close proximity to one another. It has certainly been very helpful to know the names of the Kesimpta drug trials and thank you so much for sending me that information. It was very thoughtful of you and has been very reassuring to read. My neurologist said it was generally well-tolerated and the trial results sound so positive, which is good to know.
I have now restarted the drug so as to protect the MS while I await the surgery results this Friday and news of any further treatment.
As you say, I must believe in my MS team and the oncologists. I am grateful that they have been in contact with one another and intend to liaise in the future. It has all been such a terrible shock but it is important to remember that so much can be achieved now in medicine, I have to think positively . Adversity can make one stronger somehow.
I hope all continues to go well for you on Kesimpta. It does feel like a good drug with the convenience of only having to take it once a month.
Thank you so much again for your helpful and understanding reply, I really appreciate it.
. Adversity can make one stronger somehow.