Hi I’m new to the forum and would like to ask a question.
I have Waldenström macroglobulinaemia (WM) which is a rare form of non Hodgkin lymphoma and over the past 15 years I have had to have treatment every 2 or 3 years. Unfortunately the treatment has damaged my immune system and I was lucky enough to be put on immuglobulin infusions which help me fight infection I was told I would need them for the rest of my life.
However now because it is a precious and costly resource I am being asked to come off or reduce the immuglobulin.
My question is has anybody else being ask the same ? I am quite distressed at the thought of coming off it.
I am a fellow sufferer and have so far had one course of treatment. The info I was given is that the condition, not the treatment, renders our immune system as weak.
I have never been offered any drugs to assist with boosting immunity. I guess my health authority (Essex) felt that keeping patients in the dark would save money!
I have not seen my consultant since diagnosis. Only have a two minute phone call every six months to let me know blood results. He has never given me the opportunity to ask any questions.
If it wasn’t for Blood Cancer and Lymphoma website I would be lost.
Your post is first time I have heard of such drugs.
Can you ask for referral for second opinion?
It is not the Waldenström macroglobulinaemia (WM) that has caused my immune system issues although this does cause problems it is the treatments I have received that have caused the the problem for me
I found the Blood Cancer helpline extremely useful. You could email or phone for advice.
I wish you well
Thank you I will give them a call
Hi, a great big welcome to our forum @1972.
I am so sorry to hear how distressed you are at the thought of coming off your medication.
Personally I have learnt to really be pleasantly assertive and honestly tell my medical team exactly what I feel and how distressed I might be by their thoughts or decisions.
We are all very unique individuals with personal medical histories, test results and treatments etc. and our medical teams are best placed to answer your concerns.
Please do let us know how you get on and I would like to hear more about you.
Take lots of special care of yourself and thanks so much for posting.
@MSullivan has given you great advice to ring the Blood Cancer Support Line, their number is 0808 2080 888
Thank you for your email I will give your support line a call .
Good morning @1972, thank you for posting and a very warm welcome to the forum. We’re sorry to hear how you’ve been feeling- this is understandable when your treatment has changed. May we ask if you’ve managed to speak to a member of your team about your concerns at all? We’d encourage you to do so, if you haven’t already, as these decisions are very much considered on an individual basis. Your Clinical Nurse Specialist, consultant, and/or haematology pharmacist might be able to shed more light on the situation and help you to consider the most suitable plan for you as an individual going forwards.
We thought we’d share this factsheet about immunoglobulin therapy from the International Waldenström macroglobulinaemia (WM) Foundation, just in case it’s useful for anyone on here- IVIG_FactSheet-English.pdf (iwmf.com). Essentially it is not a one size fits all approach for the therapy in Waldenström macroglobulinaemia (WM), and it’s important to take into account not only a person’s antibody levels but also history of infections. Thus it is not the standard option for everybody, although it’s understandable to want some clarity if you were receiving it and the proposed plan has changed.
As others have said, please do feel free to give us a call if you want to talk things over or need any support at all- we’re here for you (0808 2080 888).
Good morning Tanya thank for the details that is very useful to know. I will be speaking to my haematology consultant next week so I will make a few notes ready to ask her.