WM

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  flinco | Newly diagnosed | published 4 months ago | Originally written in Italian WM

  I no longer can run, walk in the mountains or play football!
  Hello, after many tests I have discovered that I have WM. It all started when I felt more and more tired every time I ran or walked in the mountains. I thought I was just out of practise and tried to do more but to no avail. The doctor told me it could be low potassium, vitamin B1, calcium, or was due to anaemia (my haemoglobin values were always getting lower, from a standard of 11.5 I reached 9.6). This because I am also betamicrocitemico (immune carrier of Mediterranean anaemia).
  From various examinations resulted an ESR of 120, and from this point on, they started various tests that in the end found that I have WM.
  Now I'm in treatment at the Niguarda Hospital, reference centre in Europe for WM, and I'm taking all the tests over again. I have already been told that if I fit in to the experimental protocol I will carry out a series of chemotherapy treatments with bendamustine + rituximab (beginning around February 13th or 14th). Actually I am very reluctant to do chemo but what alternatives do I have with this rare disease?

  I'm trying with homeopathy and Chinese herbal medicine, it helps me a lot because it gives me a certain strength. But in the end my haemoglobin continues to be very low from 8.1 to 8.6. The haemoglobin is the problem that goes along with my Mediterranean anaemia.

  Has anyone avoided chemo and used only transfusions?

  Has anyone experimented bendamustine + rituximab and is able to give me some information about it?

  Have any of you followed different paths than chemo?

  Thanks to all, bye
  One reply to the topic — see all replies

  • 
    pmanning published 4 months ago | Originally written in English

    @flinco
    Welcome to the forum and for sharing your story. I was diagnosed in September 2010 with very similar symptoms to yours (although I did not have an inherited anaemia like yours, my haemoglobin was 9.8). Like you I was exercising and was fitter generally than a few years ago, but I still got exhausted climbing the stairs!
    As we are not doctors on this forum, we are not able to give medical advice, but I would like to offer the following comments and observations:
    1. You are being investigated and offered treatment by a hospital which has an international profile and I hope this is an encouragement to you.
    2. While transfusions have a role in the management of some cases of WM (for example, to support those whose blood counts go low after chemotherapy) they are not used on their own to treat the disease. Plasmapheresis on the other hand is of great use in treating hyperviscosity of the blood resulting from the accumulation of IgM paraprotein that can be an issue for some patients. Your doctors will advise you on the implications of chemo treatment for the existing haemoglobin and red cell abnormalities that arise from your Mediterranean anaemia.
    3. Bendamustine is not yet approved for treatment of WM in the UK so I cannot comment on what you might experience from being treated with it. I will say that it was used in East Germany for several decades before being adopted in Western Europe and that it has been attracting a lot of interest and excitement as part of the armoury of treatments. if you decide to go ahead, do let us know how you get on with it.
    4. I have had several different chemo drugs over several months since diagnosis and am now feeling very well. Side effects can arise but there are ways of dealing with them that are highly effective for many people. Maintaining good diet and general fitness will help you combat the side effects. Your doctors will advise you on side effects and how they are to be managed.
    5. I had six doses of rituximab about a year ago and had a very good experience with it. It is not a chemo drug but targets a protein on the abnormal B-cells that proliferate in WM and kills the cells. Allergic reactions can arise when rituximab is administered and for this reason it is given slowly at first and the rate gradually increased if the patient is OK. Your doctors should advise you on this. Some people experience a marked but temporary increase in IgM after treatment with rituximab, but there are ways of managing this and again your doctors should advise you.
    6. I have no experience of homoeopathy or Chinese medicine and am unable to comment on these. I would just observe that they are not subject to the same rigorous testing and monitoring as treatments adopted in mainstream medical practice.
    Accepting chemo treatment is undoubtedly a serious decision and chemo has its risks. In my case I found the side effects were well managed and tolerable and I experienced no strange reactions to rituximab. My disease was too well advanced when I was diagnosed for me not to have treatment. I hope you find that you can share all your concerns with your doctors and that they will advise you. It is important to remember that everyone is different, although a lot of the time patients have very similar experiences. There has been significant progress in the treatment of WM over the years and the outlook for many patients both in terms of quality of life and control of their disease has improved considerably.
    Wishing you the best of health - do come back and let us know how you are getting on.
    Phil
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    Phil Manning, English language moderator