Sunday, November 23, 2008

Vitamin K2

I couldn't help but be inspired by Margaret's post "Purring against myeloma" to snuggle up with Marlee and ponder the health of my bones. I have had significant lytic lesion progression in the past year. One of which resulted in a broken humerus. All this despite Velcade, GRN163L, Zometa and Aredia. Vitamin K2 has recently attacted the attention of nutritionist with regard to bone and heart health, although clear randomized clinical trials have not yet been done. Vitamin K2 is not common in western diets and is therefore difficult to access its affect on bone health via population based studies. There is a correletion in Japanese studies between bone health and those that consume Vitamin K2 rich natto (a fermented soy product). "The reported outcomes of clinical trials, primarily from Japan, that have assessed the effect of MK-4 treatment on fracture risk and bone loss at the spine are
positive overall.
" With my "first do no harm" motto and the knowledge that vitamin k2 toxicity is almost nonexistent adding K2 (along with the already present and monitored vitamin D) is a no brainer.

Thursday, November 13, 2008

Yet Another Response

Well after a 50% reduction in the first cycle of Rev/dex I am happy to report another significant response in the second cycle. My myeloma marker of choice (lambda free light chain expression) dropped another 30%. Now if the GRN163L had any effect on the myeloma stem cells then I may be looking at a nice long term remission. :-)

I guess you'll have to be patient on that front.

I started making sound with a mandolin a while ago. The tuning and fingering is the same as a violin which I used to be able to make music with. It is definately not like a violin and I don't make music - yet. I am having a great time though. It stretches my neurons.

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.