Hi everyone and hope you’re as well as expected,
Has anyone had any exprience of coming off Tysabri when diagnosed with breast cancer. All I’ve been told is that I cannot have Tysabri with an active cancer.
Ok fair enough, but what is worrying me is the length of time I may be off Tysabri, as it will be for a good 6 months. Has anyone experience of this?
My last Tysabri infusion was 12th September. I was diagnosed with breast cancer a month later. Following an MRI breast scan they found a second lesion, that‘s then been ultrasounded to seen if it needs biopsying. The waiting for results has been hard.
I’ve got an op date of 19th December and have had my Pre Op appointment. If the ECG is ok it’s all go. I have to have a marker in the second lesion 4 days before the op.
The breast care nurse told me that there is a backlog in reporting and due to Christmas I will not get the surgery results for 4+ weeks (end of January). Further treatment as been suggested in the form of Radiotherapy, but they can’t definately say until the results are in. Radiotherapy for 6 weeks (isn’t that usual?) takes me to mid March. I’ll have been off Tysabri for 6 months then.
I am asking here as I can’t seem to get to speak to anyone on the MS team here. I have left 3 messages sent 2 emails without a solitary reply and then found out the only MS nurse was on holiday.
I got an email this morning, and tells me there are others on the same journey as me but it hasn’t addressed my concerns:
I replied specifically asking the folowing:
I have read research that even a 6-month gap can carry risks. Will I be closely monitored during this time? Can you give me any assurance that I will be ok during this time, and not suffer a rebound and possibly increase my disability? Have others been off Tysabri for this long with no ill effects?
Not sure if anyone here can help and put my mind at rest.
Thank you
Jane
I can’t answer your question regarding the Tysabri, for one thing I haven’t had breast cancer.. although I have had cancer…and two I haven’t ever had any kind of DMD treatment @Jane269 . It is natural to worry about coming of any kind of treatment though, especially if it’s been successful in keeping your ms from progressing. There’s only one thing I’d say, which is, the cancer could possibly kill you if left untreated: whilst it might not be ideal for you to be off the DMD treatment for 6 months hopefully your ms won’t progress rapidly in this time. Wishing you well with a successful outcome for being cancer free after your cancer treatment and also that the possibility of 6 months without any DMD treatment doesn’t have any detrimental affect on your ms.
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Can I ask who was it who told you can’t have Tysabri while you have cancer? If it was your oncologist then can they make contact with your neurologist to explore other possible DMTs - perhaps some one of the older ones that don’t have such a strong effect on the immune system?
Try speaking to your GP as well and see if they have any suggestions and can get in touch with your Neurologist
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Oh my goodness, that’s a very difficult situation for you. I am so sorry. You must be reeling with it all. I have nothing to offer on your questions, of course, but I would certainly be wanting to talk to your MS advisors on what they can offer to protect you if you do have to stop natalizumab during your cancer treatment. I am really sorry that you have so much on your plate. Life can be very unfair. Good luck with it all.
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Yes Freshairman, I totally agree that the Breast cancer has to be the top priority. Its not an ideal situation but I wish I knew why I had to stop Tysabri. I’m just told it’s contraindicated in active cancers. Not sure if it has something to do with the PML risk?? I’m guessing here and can’t find anything online to give me any clues.
Hank_Dogs. I was told to stop by my MS Nurse Consultant and no doubt it’s come from the top. My consultant is one of the top Profs in the country although I rarely see him. He does know of my situation. She did wonder if I could be put on something else but no to that too.
My GP would not know and would just refer me back to the MS team.
Thanks Alison 100 for your kindness. Yes, my head’s been whirling. Following my post here, I seem to have woken them up. They will do an MRI before my OP and check for active disease but , their words, “ we can’t treat you any sooner than is safe to do so.” They can’t assurre me that I’ll be ok, I suppose everyone is different. There are other patients in the same predicament who have come through it without any ill effects, but also says that these are a small number of people.
Maybe there should be a medical paper on this! Just have to keep my fingers crossed, and be as healthy as I can be.
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