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    Hi Joyce. I haven't checked in with the forum for a long time. I've been on ibrutinib since...

    Hi Joyce. I haven't checked in with the forum for a long time. I've been on ibrutinib since mid-2018, and am continuing to do well. My bloodwork is pretty good, and I haven't had much in the way of side effects. No complaints until now. Hope all is well with you and your husband! Greg.
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    Hi Joyce, I hope your husband's situation resolves successfully. I'm about to go on Ibrutinib...

    Hi Joyce, I hope your husband's situation resolves successfully. I'm about to go on Ibrutinib, and am hopeful that the side effects will be tolerable. The drug seems to affect different people in different ways, so in the end it's a bit of a crap shoot. In any event, best of luck - note that...
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    Prednisone for w&w?

    Ten more sleeps until I head to the beach, so the countdown is on! With my final R-CV infusion on Wednesday and the last of the P today, I'm ready to shift to a more natural remedy during the recovery phase - planning to start with daily margaritas & cerveza, and see how it goes from there!
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    Prednisone for w&w?

    Mark, I sincerely hope the R is having a delayed positive effect because with the suffering the R-CVP put you through, you deserve a break!
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    Eating during long infusions

    Wow Holepuncher, that's an impressive performance - sounds like you had the "benadryl munchies"! I always have something on hand to eat during treatment. When my wife's around it's ham and cheese sandwiches (with lettuce, etc.), but when it's just me I make a couple of peanut butter and...
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    Numb, tingling in fingertips

    Thought I'd take a minute to provide a brief update on my earlier post on this thread. Since Oct 8th, I continued with the vitamin B and my exercise regimen. This seemed to hold the PN at bay. Eleven days ago I slipped down to Mexico for a quick vacation, during which I was inconsistent in...
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    Vaccine for Waldenstroms

    I think this press release is more investor-oriented, as opposed to heralding any kind of breakthrough in the treatment of Waldenstrom's. However as somebody who was diagnosed with LPL / Waldenstrom's seven years ago, I'm always pleased whenever I see that ANYBODY is actually working on a...
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    Night Sweats

    To my knowledge, there is little that can be done to stop night sweats. I've talked to my oncologist about night sweats, and according to him, the mechanism is not very well understood. On a positive note, when I was treated 7 years ago, the sweats stopped after the second chemo session...
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    Numb, tingling in fingertips

    I'm halfway through a 6-round course of R-CVP. About two weeks after the second treatment, I noticed a light tingling sensation in my hands & feet (more noticeable in the hands). This became progressively worse over the next couple of weeks - reaching a point where my fingertips were numb...
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    Same to you, Anna. Sorry for the delayed response, I haven't checked back with the forum...

    Same to you, Anna. Sorry for the delayed response, I haven't checked back with the forum lately. I've completed 3 R-CVP treatments to this point, so I'm halfway there - so far so good! Best of luck to you as well, Greg (in Calgary)
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    NHL--Our Stories (if you want replies, start a new thread)

    7 Years Later, Here We Go Again! When I was diagnosed with Waldenstrom’s Macroglobulinemia (lymphoplasmacytic lymphoma) in 2004 at the age of 45, my first thought was - “Great - I can’t even pronounce it!!”. My second thought was “Holy @#&%, now what?”. In hindsight it’s obvious that I...
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