Thursday, November 06, 2008

28 Day Partial Remission

I saw the oncologist yesterday and had a skeletal survey (bunch of x-rays) and an Aredia infusion (osteoporosis type bone strengthening drug) in the evening. My myeloma activity markers (protein expression) dropped by 50% in the first 28 days on Revlimid and Dex. My blood counts are still hovering around 'normal' and consequently my fatigue is pretty mellow. Now I'm working on getting the arm back in shape - it is quite gaunt and painful if I do just the right flex. The pain disappears instantly though, but I instinctively use my arm less which helps with the general left arm malnourished look. I'll find out what happened in the second 28 day cycle of Revlimid and Dex early next week.

At the beginning of October Geoff's Light the Night team raised $550 for the Western NY Leukemia and Lymphoma (and Myeloma) Society. They are a great in the trenches type of organization. They were the first people to call me after my diagnosis and connected me up with a few other survivors. The total team raised almost 5 grand in my name. Wow!

Gildas Club Western New York Logo
Two weeks ago Thursday I gave a 5 minute closing emotional hook at the annual Gilda's Club WNY fund raising breakfast. That one hour bash raised over 200 grand. I'd like to think my 5 minute story hooked and reeled in a little bit of extra cash for the best club I've ever been a member of.

Saturday night Lu and I along with 28 of our friends went to an IMF fund raising event "Evening for a Cure" and raised a bit over 2 grand for my oncologist's research efforts. There were another 190 folks there so I'm hoping the proceeds will be enough to keep one more staff member going for another year. I feel so blessed to have an oncologist who is doing cutting edge world renown myeloma research.

I am profoundly touched and honored by the generosity and compassion of my friends and mostly by acknowledging your and their love and support of me. It bring tears to my eyes every time I think about it.

I hope all is well with everyone. I'm certainly excited today (a Dex day which started at 3 AM). I'm playing really crappy mandolin now and getting more genuine every day.


Margaret said...

It's fantastico to read another post from you, especially one with such great news (hurray for PR!). Congrats, LPC!

Smiling at ya from Firenze,
Margaret :-)

Anonymous said...

Good to hear things are going so well LPC. Keep it up.

Kim said...


I looked around for your email but couldn't seem to find it. I wanted to let you know about a webinar hosted by the International Myeloma Foundation. Let me know if you would like me to send you some more information.


Weber Shandwick for the International Myeloma Foundation and Celgene