Debio

Thinking of you and wishing you well. Thank you for taking the time to help others. I see you reaching out to a bunch of folks, but haven't seen an update on how you are doing. How are you?

Hi Debio, can you please post the link to the Multiple Myeloma Patient only website? there are so many out there - thanks

Thank you again. That is exactly the advice I was looking!

Hi! Do you get financial help with the revlimid? I can't afford the $479 after insurance? i have applied for financial help from drug company, but haven't heard back from them. I am taking monthly zometa...but, I don't know what else to do at this point.

Thanks very much for your input regarding pain. I just started Norco today. I wanted to start slow, and not start with oxy. I'll save that for later. Thanks again,
Dean

Have not heard from Greg either. Yes I'm on FB but email is easier. Here is mine - charles.banks@wi.rr.com.

Debio - Hello. I read some pieces of your story. My husband was recently diagnosed with MM. He started chemo (velcade, decadron and Cytoxan) 4 weeks ago. His kidneys were the indicator - he had a nose bleed and high blood pressure (after being a perfectly healthy person), then it went to blood tests. Then, they discovered the impaired kidney function. Do you know what your creatinine levels were when you were diagnosed? Did you ever have to do dialysis? Did you have plasmapherisis? How long did you do Chemo before the transplant?

Hello we have very similar stories in that I have three children who rely on me as well. I had my transplant in October of last year. I am feeling better than I have in years! Aging weight is my main issue. I went into the hospital reluctantly but I had developed pneumonia and like you- diagnosed almost immediately and transported to Jackson. MS within three hours of my admittance. I was reluctant to join this network in the past. But now I feel like myself and sharing experiences or advice to new people diagnosed with MM seems to be the right thing for me at this stage My doctors have not told me a stage , not sure why?!? But they have said its just a number and it really doesn't matter because they are changing my body from what it was when I was first diagnosed lol. At this point they're probably right ignorance is bliss. Ha ha but I do have an active relationship w my doctors and we are a "team" relating to my treatment. At any rate good luck to you. If you would like to have an ear- I'm here
Lynne
Ps ; my children have had to endure anguish I never wanted them to have. But they are strong, brave, loving, and most of all amazing individuals. They have been strong for me when I needed and yet allowed me to slowly come back go being their mom who supports them in their lives like before this all happened. The elephant is always in the room ha ha but he is getting smaller and everyone is beginning to relax.

I too have MM....I was diagnosed in 2000...had a transplant in 2001....although no longer in remission my numbers are very low and no need for meds....so, no meds since the transplant. I run an MM support group in Hollywood, Fl...

I also have a walker and a wheel chair that I use when my pain level increases and the swelling in my feet gets bad. at this time I use a cane to walk but I cannot stand or sit for long periods of time without my feet swelling so bad that I can't walk. The swelling has been improving as time goes by.

I also thought I would be on it for the rest of my life, so I'm a little nervous about getting off of it! She said I'm doing so well, but I'm going to have a few chats with her before she takes me off of it.