Saturday, May 19, 2012

Wanna Eavesdrop on Me?

Here is a note I left on a fellow myeloma patient's blog last week. So instead of just putting a link to Sean Tiernan's blog called My Life With Myeloma, here is what I wrote to him. 

Please drop by Sean's blog and wish him well if you have a moment, okay?

Overheard on My Life With Myeloma, a blog by Sean Tiernan

Hiya Sean, Mark ( / Multiple Myeloma My Way) here. It's a big news day for me whenever you write and I've re-read your post a few times... 

Once I submitted to diagnostic testing last Fall and a clear diagnosis of relapse, I went to find a new team to handle my treatment. They advised and I accepted an aggressive treatment with Velcade (bortezomib), Revlimid (lenalidomide) and Decadron (dexamethasone) -- All in I completed 5 twenty eight day cycles. That was all I could tolerate. It was supposed to have been six to eight total, but I threw in the towel. It was just too brutal. 

Since completing the heavy therapy and a couple months rest and recuperation, I am continuing with 'maintenance' therapy. So now my treatment is 21 days of 15mg rev/lenalidomide, then 7 off. It's given me edema in my legs. That is on top of the pain/neuropathy I got from velcade/bortezomib/dex regime. The neuropathy has hold of both my feet and I feel a steady pain level of 6 or 7; day in - day out. 

So hearing from you that your myeloma is steadily active and taking the beating you are giving it and holding its own ... that gives me a whole new perspective on what I am likely to be seeing before a whole lot of time goes by.

From what you have been describing about your treatments and your lab results, you are fighting hard and keeping focused on finding a way to weaken the myeloma's attacks. That is cool. It sounds like you are giving it everything you've got and all the best of what the latest/best-est protocols seem to promise to us. If it could work for anyone, you show all the signs that you are giving everything any of us can -- you're putting your best day-to-day effort into it and keeping yourself looking forward and the way you write, you seem to expect you will be seeing many more days to come. Good On Ya Sean! Keep On Keepin' On... 

Until next time, I send you

My very best regards,
- Mark

PS - Thanks to all who have been dropping by to leave
comments for me here and on Facebook.

It really lifts me up!