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Lymphoplasmacytic Lymphoma Non IgM Treatment option

J_A
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Hi,

    My wife finally has some sort of diagnosis and it is Lymphoplasmacytic Lymphoma Non IgM, Actually IgG Kappa.  We live in Scotland so it seems to be well behind IK in treatment options and the local Hospital seems to treat it as Walderstrom's Macroglobulinaemia, it is the same family but with a worse outcome and needs to be treated as a distinct disease.  Best treatment seems to be a Bor family Chemo such as Bortezomib but no chance of that in Scotland.  Is there anyone out there who could tell us the best treatment and where/how to get it.  They may well watch and wait for a while.  I did say to the Consultant that I would like the Bone Marrow tested for this as they have been so slow, he said no as was Myeloma or related, so we are behind, more tests are now being done but 6 months plus since first MRI show something was up and nearly 3 months since bloods showed M-Spike.  Got info from them yesterday and they just treat it as W.M. total rubbish in every way.  Help anyone if you can, there must be someone somewhere who understands this illness?  Thanks

 

  • Hello J_A and thank you for your recent post,

    I am sorry to learn of your wife's situation, this must be a difficult time, especially, as it sounds like it has taken a long time for the diagnosis. 

    As you are aware lymphoplasmacytic lymphoma is rare, and this can make it hard to find information. Cancer Research UK mainly funds research and clinical trials, we are not a treatment centre, so we do not have doctors here who can give a medical opinion.

    If you did want to have a second opinion the best person to discuss this with would be either your wife's specialist or her GP as they can make a referral on her behalf. I am afraid we cannot recommend a specific specialist or centre. I am unsure where in Scotland you are, but it might be worth looking at somewhere like The Beatson in West Scotland which is a big cancer centre and may have more experience of treating rarer cancers.

    Other organisations that you could contact for information and advice are Blood Cancer UK, they also have a Clinical Trials Support Team that provides personalised support to all patients around clinical trials if this is something your wife wants to look into.

    Lymphoma Action is a charity dedicated to providing information and support specifically to people affected by lymphoma.

    I hope this information helps a little. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care all the best

    Jemma

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