Hi All
This time last year I was having chemotherapy to treat WM but it was only 50% successful. Since July 2019 I have known that I would have treatment with Ibrutinib at some stage, but I do not know when that will be.
I am anxious about the side-effects from Ibrutinib, not least because I live on my own. Is there anyone with WM who is on Ibrutinib who can give me any info on this?
Thanks Patricia
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Hi Patricia, I cannot answer your question but I think it is very natural to have fears, questions etc. especially living on your own. I hope someone can help you. Please do keep posting as we are all here to support you.
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hi @Patricia,
I hope you are doing okay? it’s so understandable to anxious about the side effects of your treatment. As you say, concerns around living alone are likely to add this. It’s so understandable to feeling like this. You may find our webpages on WM helpful: https://bloodcancer.org.uk/understanding-blood-cancer/lymphoma/waldenstrom-macroglobulinaemia/ within this there is section about treatment.
I also wondered @Patricia if you have had any opportunity to talk any of this through your treatment team? They would be a really good point of call to discuss aspects such as side effects and how this can best be managed.
Please do feel free to talk through your concerns and thoughts on here.
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Hi Su
Thanks for taking the time to respond.
You are right I should raise my concerns with my Consultant the next time I speak to him.
I have fact sheets on the drug, thanks, it is just that someone else on the drug treating a different blood cancer referred on the forum to 3 trips to A & E and it did not fill me with confidence!
We are all different so it still doesn’t have to happen to me, it just doesn’t feel like a ringing endorsement!
Bye for now, Patricia
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Thanks Erica, hope you’ll have a good weekend. Patricia
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@Patricia Ah, that’s so understandable. You are right when you say everyone is different and no two people will be affected by the medication in the exact same way. But of course, you’re only human to worry when you hear from other peoples’ experiences. When are you next speaking to your consultant?
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Hi just to say there is a WMUK specific website. https://www.wmuk.org.uk/ with lots of information and contacts
I can’t give you any specific info as I am on WW but WMUK is a site specifically for WM.
Hope this helps
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Hi @Junior, welcome to our online community! May I ask how you’re doing at this time?
Thank you so much for sharing the details of WMUK on here!
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Hi Junior, thanks so much for the info and a great big welcome to our community forum and you have just shown it’s value by giving someone information and supporting each other. I look forward to hearing more about you.
Good afternoon Patricia,
I have just read your post regarding your up and coming Ibrutinib treatment. I too have WM. I was diagnosed in 2016 and after 36 sessions of chemotherapy and Rituximab treatment I have been in ‘remission’ for two years. However as we both know this condition isn’t curable so will at some point rear it’s ugly head again. I was advised not so long ago when I enquired what options were out there if or when it was to return that Ibrutinib is an option. As there aren’t many of us on this forum who have WM I would very much like to keep in touch on here as to how you are doing. It would be of great help also to hear how you get on with your next course of treatment. My thoughts are with you and wish you every bit of strength and best wishes.
Sara x
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Hi @sajdee Hi Sara, I hope you are doing okay? As you say, it can be especially challenging to come across many other people who are affected by the same condition. But I’m so pleased that you have reached out to us again, and do remember you are always very welcome to post on here any concerns you have or anything you want to talk through
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Hi Sarah, yes, it is difficult when you have a rare blood cancer to find others so you can compare notes and experiences. What I have found though is that we often seem to share the same feelings, thoughts and practicalities, take care.
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Hi, Alice. I am doing very well thank you and thank you for the welcome. I have WM and been on watch and wait for 8 years this summer, gosh we are almost at summer. I was diagnosed when I was 47. I am very blessed not to have yet needed any treatment.
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Thank you very much.
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Thanks Su
I will be speaking to my Consultant on 21st May, so am preparing my list of questions for him at the moment.
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Thanks Junior.
I do know about WMUK. I have been trying to get more specific information relevant to my case from them for several months without success, which is why I tried this website (recommended by a friend who works for another cancer charity). Glad to hear you are getting a long period on Watch & Wait. Patricia
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Hi Sara
Thanks for your post. As you can tell I do not check in regularly, sorry.
You did well to endure 36 sessions of chemo plus Rituximab. I had an allergic reaction to Rituximab, which is why chemo was only 50% successful, but have no real idea when treatment with Ibrutinib will commence. Glad to hear that you are in remission.
Will endeavour to log in/post after I have spoken to my Consultant in a fortnight.
Patricia x
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@Patricia I hope you’re doing okay? that’s so encouraging to hear, we will be thinking of you- do let us know how it all goes 
@Junior Hi Junior, we’re so glad to hear all is well with you. And goodness I know exactly what you mean about summer! doesn’t time fly? How have things been for you since your diagnosis, how much support have you been able to get from your treating team?
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Hi Patricia. yes, please do let us know how the appointment with your consultant goes in a fortnight. How are you feeling now?
Hi Sara, how are you doing now?