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jon22's Recent CancerCompass Activity

  • jon22 has replied to a post on the message board

    Gayle, that's incredible, thanks for posting. What an ordeal - I can only imagine. Did you do any chemo or radiotherapy for the other cancers while you were simultaneously on Revlimid or another MM treatment? I'm worried they'll have to stop my dad's Revlimid while he undergoes a lengthy (attempt at) treatment, which will give the myeloma time to come back stronger than before.

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    • jon22 has created a new message board discussion

      Yeah, this pretty much sucks. Dad (68) had been doing well with his Rev treatment after a stem-cell transplant, when scans showed two spots on his lungs, and now after a biopsy, sure enough his lung cancer is back. He had one third of a lung removed 18 months ago for the same kind of thing, and it's the same lung involved now. He has to wait for a conference between the lung guy, the oncologist and his hematologist ...

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      • jon22 has replied to a post on the message board

        Well, it's been a year since his SCT, and his protein levels weren't super high, they're just higher than the normal range (he has IgM variety, normal level is less than 3, his has come down from 130 to 9--the units are off by a factor of 10 from what some of you are used to, as we're in Canada.) I just wonder how they decide between discontinuing the Revlamid when blood counts are poor, versus continuing the treatm...

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        • jon22 has replied to a post on the message board

          Hey thanks Terry, actually they did give him a transfusion and the count is a bit higher now. But what I wonder is, if he didn't have this bronchoscopy coming up with risk of bleeding, would the low WBC and platelets be enough to take someone off the Rev? Or would they keep going with the Rev, but do regular transfusions and neupogen injections? I am worried that after they've figured out what's what with his lungs ...

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            Dad has been on Revlamid for several months now, he's gone down from 25 mg/day to 15, though not as soon as his doctor expected because his protein levels weren't coming down as fast as he would have liked. Recently he had to have a bronchoscopy for an unrelated issue and his MM doctor took him off the Rev first, hoping to get his platelets and his WBC count up. The platelets were down to 50, dad said (I'm sorry I do...

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            • jon22 has replied to a post on the message board

              Thanks Doug. That was a very good read. It didn't say what the units were that numbers like my dad's must have been given in, but I put it together from a little more searching elsewhere--it is in g/dL, which I think means grams of protein per 100 ml of blood. It is pretty amazing to think that this number can get as high as 130--this means there's more than a gram of M-protein in every millilitre of blood... 15 gram...

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              • jon22 has created a new message board discussion

                Hi, My dad has had some questions for his doctor, who couldn't seem to explain it to him so I'm trying to help him figure it out. Dad had Velcade & Dex, then a stem-cell treatment, and now he is on Revlimid since 3 months. His protein measurement was over 125 when first diagnosed 18 months ago (we are in Canada so I think the scale is different from the US, it's off by a factor of 10 I believe). For comparison, ...

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                • jon22 has created a new message board discussion

                  Hi, I was just reading again about gene profiling. This article http://www.hemonctoday.com/articlePrint.aspx?type=print& puts the case pretty strongly that it should be part of any workup prior to determining the course of treatment. I have two questions. First, am I right in understanding that there are two kinds of genetic testing: testing of the patients' DNA (which I think you can get from any cell), and te...

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                  • jon22 has created a new message board discussion

                    Hi - a couple of times I have seen people mentioning here that they expect excellent new MM drugs to be on the market soon. I guess they are currently in trials. Which are these drugs? I could do with some optimistic news, for the sake of my dad (on Revlimid "maintenance" though he's not really in remission, had good partial response to Velcade and SCT)

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                    • jon22 has replied to a post on the message board

                      I agree, these are really excellent! Thanks for posting here, and I've bookmarked that blog.

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