LIVING WITH MCL

I'm stuck lying around the house with a bad back [again]. (Fortunately there is a golf tournament to occupy me somewhat.) Don't know what I did to deserve it, but I've found that often to be the case. So since it's been over a week since I've posted anything, I thought I'd take this opportunity to just 'ramble' about a few things that come to mind. Edie is still on Velcade + Dex maintenance therapy. She switched to every other week, because every week was just getting to be too much, and also started subcutaneous injections of the Velcade instead of the standard infusion. While the research seems to indicate there is no difference between subcutaneous injections and infusions, I'm not so confident. Especially now that her counts have started to rise slightly. That of course could be the result of going to every other week therapy rather than every week. She gets another blood test on Monday, and has an appointment with her oncologist and another Velc...

It's now been just over 9 years since I was diagnosed with MCL, but unlike the fact I no longer have to go into work, this is something I don't think I'll ever get used to. I've even gotten to the point now where I think I may never need treatment, which wouldn't be a bad thing, but what's scary is, that mindset has become so engrained, I'm at the point where I'm afraid of treatment, and may be hesitant to take it, or even realize I need treatment, when the time comes. I may even benefit from beginning treatment now, with single agent Rituxan, which would likely make me feel better by reducing the size of my spleen, and my feelings of fatigue, but when I think of all the known [and potentially more severe] unknown side effects, I'm hesitant. After all, I'm not at the point where I am totally debilitated. I can still function somewhat normal (and not having to make that 80 mile drive to work any more has helped), so I maintain the status quo, hopi...

Every now and then I actually post something pertinent to my disease, and while I'm not really posting anything here, I am directing you to another website , which I consider of invaluable importance for anyone suffering with leukemia or lymphoma. Rituxan is one of those drugs that has definitely proven its worth over time. Used in combination with other chemo drugs [and often times alone], it has increased the period of progression free survival (PFS), and the overall survival (OS) for those suffering from leukemia or lymphoma. But despite being a wonder drug, and not really considered chemotherapy per se, that doesn't mean it isn't without its side effects and complications. Nor does it mean it won't [still] be my drug of choice (initially as a single agent therapy), when the time comes to start treatment, even after reading this article . So if you're one of those people with leukemia or lymphoma, this is definitely a must read , as you either have or will be tak...