newly diagnosed WM (new member)

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  Angus | Newly diagnosed | published 5 months ago | Originally written in English newly diagnosed WM (new member)

  Just a brief history. I live in Saskatchewan, Canada. I'm 66 and retired..and except for a bout of colon cancer 16 months ago (completely clear now) I've had a relatively disease free life. Aprox 30 years ago I was diagnosed with chronic lymphatic leukemia. I was advised at that time that I would eventually need chemo. Then I just forgot about it. About 4 months ago I had a lymph gland swell on my neck - and then another and another......etc. At the same time my spleen started to swell. My GP sent me off to an Oncologist who put me on "watch and wait". My symptoms continued to slowly get worse and my CBC hit 85,000. The swellings and CBC prompted the specialist to recommend chemo. I started R-CVP 16 days ago and my visit to the Doc today.was quite positive. The neck glands had shrunk 90% by day 8 and my spleen has gone from '4 fingers' below my ribs to '3 fingers' below. The referred pain in my shoulder from my spleen is just gone. I'd had 2 bone marrows just prior to the chemo and today the Doc advises that it's NOT CLL but, instead, WM.

  This is my first attempt at locating any 'in depth' info on WM......there's just not a whole lot out there that I've found so far. I'll keep looking.

  So far, I've had no notable complications from the chemo and actually feel quite normal...except for a bit of reflux and heartburn. I just assumed that the reflux/heartburn was a continuation of a pre-existing condition...but the DOC decided (at my gentle insistance) to test for H.Pylori. If that proves to be positive then it will be quickly treated.

  Off for my 2nd chemo session on the 10th and then evaluate that to determine what course of continued treatments I should receive.

  It's quite nice to find a site that can provide a bit of information and I want to thank all that have contributed. I must say...I'm not really concerned (I spent all that when I thought it was CLL) so I'm just in a curious research stage right now...otherwise, I really don't think much about it. It is what it is and any worrying about it is wasted mental health. Of course, that's just my take on it...but it seems to be working.
  6 replies to the topic — see all replies

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    robpleticha published 5 months ago | Originally written in English

    Hi Angus,

    My name is Rob and I work with EURORDIS. Thanks for sharing your post and I'm happy to hear you are searching away. I've asked some other patient moderators to recommend some resources.

    I'd say it might be worth getting in touch with the IMWF, who has 6 groups in Canada, perhaps there is one near you. Check this link: www.iwmf.com/services/

    Be well,
    Rob
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    pmanning published 5 months ago | Originally written in English

    Hi Angus
    It is good to read your posting. I am the English-langauage moderator for this forum (and am based in England).
    Undoubtedly you will have worked through a lot of the anxiety that normally attends a diagnosis of WM in all the time that you have been living with the possibility of CLL (I am not medically qualified, but I have seen it frequently stated that WM and CLL are related).
    As regards heartburn/reflux, I would just mention that I have been prescribed either proton pump inhibitors (e.g. omeprazole, lansoprazole) or ranitidine (Zantac) during the two chemo regimes that I have undergone in the last year in order to address the problem. Again, I am not medically qualified, but, if it were me, I would be inclined to ask my doctors for suitable medication whether or not H.Pylori were present. I believe such drugs are prescribed prophylactically as a matter of course for patients in the UK, particularly if they are receiving prednisolone (prednisone).
    As regards resources, I would strongly echo Rob's recommendation of the IWMF, which is the lead organisation for this strange and rare disease. I have just checked and they have two contacts in Alberta, which I think would be the nearest to you of their various Canadian contacts (although I appreciate you deal with much larger distances in Canada than we do in the UK!).
    Macmillan Cancer Support in the UK is also an excellent source of information for English speakers, always of course bearing in mind that there may be significant differences in medical practice between our respective countries:
    www.macmillan.org.uk/
    All the very best with your treatment and do let us know how you get on.
    KInd regards,
    Phil Manning, UK
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    Angus published 5 months ago | Originally written in English

    Hi folks - I appreciate your quick replys and suggestions of sources of information.

    Phil - you are quite correct about the Ranitinine.....this was (and is) a portion of the drugs given for my first chemo session....I believe this is done as a matter of course to prevent heartburn caused by the chemo drugs...not to address a pre-existing H.Pylori infection...but, happily, it handles both issues quite nicely.

    I shall certainly contact the Alberta contacts generously provided and continue my search for information...as well as providing timely reports on this little journey.

    Many thanks - Angus
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    pmanning published 5 months ago | Originally written in English

    Glad to be of use. Pop back any time!
    Continuing good wishes,
    Phil
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    Angus published 4 months ago | Originally written in English

    Seeking a bit of information from the community please. For the past number of months I had noticed a deterioration in my vision...blurring...inability to read high contrast letttering on the the TV, etc. I had attributed this to a diagnosis of incipient cataracts from 2 years ago. After my first course of chemo I noted that my vision completely cleared...but slowly returned to the prior condition immediately before my 2nd chemo session. After the 2nd session my vision again cleared. I had not spoken to the Doc about this but did some investigating on my own and learned about hyper viscosity of the blood. Yesterday I saw the Doc and voiced my concerns. He assured me that the matter was being corrected by the chemo and there was no cause for concern unless the viscosity issue resulted in mental confusion...at which time it would be appropriate to deal with the matter.

    Any comments on approach? The info I have is that there is a chance that the vessels effected (behind the retina) may develop an annurism...which would not be a good thing. When would it be appropriate to be concerned enough to take immediate action to reduce the viscosity of my blood to counter the symptoms?
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    pmanning published 4 months ago | Originally written in English

    Hi Angus, it's good to hear from you again.
    It's always important to remember that the people you find on here are patients and that we must rely first of all on our doctors for advice on what tests to carry out and on treatment. However, it is important to work with our doctors to make sure they work well for us! If we are not satisfied, we are entitled to seek second opinions (I am assuming this applies in Canada).
    Hyperviscosity is a problem that some with WM experience and not others (it has not so far been a feature of my disease for example) and it does not have a straight linear correlation with IgM levels. If you have not already done so you might like to check with your doctor what your blood tests are showing about your plasma viscosity and what he would expect to happen with this over the course of your treatment. An eye exam would show whether the blood vessels of your retina display the changes characteristic of hyperviscosity and again you may like to discuss this with your doctor.
    There is a very good article on the whole subject here, written by one of the UK's specialists in WM:
    www.wmuk.org.uk/documents/HyperviscositySy...
    I hope this helps,
    Phil