Multiple Myeloma Support Group
Multiple myeloma (also known as MM, myeloma, plasma cell myeloma, or as Kahler's disease after Otto Kahler) is a type of cancer of plasma cells, immune system cells in bone marrow that produce antibodies. Its prognosis, despite therapy, is generally poor, and treatment may involve chemotherapy and stem cell transplant. It is part of the broad group of diseases called...
I have been watching for days, not sure what to do but have been wanting a place to go to hear from other MM people and some place I can talk with others. From what I have seen everyone has been so nice.
I am Nancy from Mansfield, OH. 56 yrs, old and was diagnosed with MM in Dec. 2007. I was doing very well, no problems and it was found on a routine blood work from my physician, at the time he found it my IgA was 5160, I was put on Decadron and Thalomide, after 2 months was taken of Thal for a severe rash, remained on Dex for 20 months and also tried Revlimid during this time with also another reaction. Finally ask to be taken off Dex also and have been off since Aug 2009. I am now just starting Dex again, not looking forward to all the side effects again and the 30 lb weight gain, will also be going back on Rev in June. I have had 3 biopsies only thing found was a lesion on left side of skull and have been having rib pain and been on Vicodin for about 15 months. I also have very bad headaches daily and have had them for over a year. Look forward to meeting you all.
I am Nancy from Mansfield, OH. 56 yrs, old and was diagnosed with MM in Dec. 2007. I was doing very well, no problems and it was found on a routine blood work from my physician, at the time he found it my IgA was 5160, I was put on Decadron and Thalomide, after 2 months was taken of Thal for a severe rash, remained on Dex for 20 months and also tried Revlimid during this time with also another reaction. Finally ask to be taken off Dex also and have been off since Aug 2009. I am now just starting Dex again, not looking forward to all the side effects again and the 30 lb weight gain, will also be going back on Rev in June. I have had 3 biopsies only thing found was a lesion on left side of skull and have been having rib pain and been on Vicodin for about 15 months. I also have very bad headaches daily and have had them for over a year. Look forward to meeting you all.
I am about the same age as you and did velcade followed by melphalan and an autologous stem cell rescue.
Are you taking bisphosphonates to limit bone damage?
Which reminds me to take my calcium and D supplement. . .
And I agree Decadron is such a nusiance!
Welcome to the group. I know how important it is to talk with others who share this illness. For me, it's been 7 months and I've finally reached a point to where I can talk about it and not cry. I started my treatments back in January that consisted of Revlimid, Dex, and Velcade. It was extremely hard, as I suffered both weight loss (in the beginning for not being able to tolerate anything to eat), to weight gain - going on right now. This group is a great support and there are a lot of knowledgable people on here as well.
Good Luck,
Kathy