Velcade

I am 50 years old and was diagnosed with MM in January. I am asymptomatic.

My IgG was 9,500+ with total protein at 13.1 when I entered a clinical trial of Velcade with Thalidomide. After one cycle, my IgG is down to 5,200, total protein is now at 8.6.

Side effects have been minimal, mostly sleepiness from the Thalidomide. I have been able to maintain an amazingly normal quality of life with this treatment.

Thanks for sharing your info, I appreciate it.
Barbara

Hi Cath,
Sorry it has taken me so long to return your message. How is your treatment going? Great I hope! I am just now starting to see my counts increase, just slightly. It is the first increase in a year. My oncologist said that I will probably have to have another treatment of Velcade if my counts rise any higher but If one treatment lasts for a year I'm a happy camper! Let me know how you are doing. I am so greatful for this treatment. The hardest challenge I have had since I started taking it is learning how to live again instead of wondering how much longer I will be around. Erasing the doubts or at least putting them on the back burner has been difficult for me. I guess it was my pessimistic side that wouldn't let go of the first diagonsis of 6 months or less to live. I guess someone is watching over us with the approval of Velcade. Take care Darlene

Dear Linda ,
Hope your mother is doing well. Yes I have read the article in Cure, I also get it. But I appreciate the insite. I try to keep updated on the new treatments and their results. I am just now starting to see my counts rising. I do believe that velcade is my answer to a longer life. I guess time will tell. If it does as well as it did for me the first time I will be grateful. Sincerely Darlene

Darlene
I am sure that another treatment of velcade will
get you back under control. My mom has now had
two complete treatments and is doing much
better. Her red blood count at the beginning of
treatment (after a transfusion) was 7.0 and now
her last test during her 10 day rest her red
count is up to 11.2. I am not sure about her
other counts but her major symptom was her blood
count decreasing. The doctors say she is doing
really well and she is looking forward to when
she only has to have a shot once a week or even
every other week. I hope all goes well with
your treatment but I have a feeling it will
after seeing what is going on with my mom. Keep
in touch.
Linda

Hi all,

My mom is 51 and was diagnosed year and half ago. She did 4 rounds of VAD and then autologous stem cell transplant last October. Sadly, the MM has come back as soft tissue around her pelvis and breast. She is being offered a trial for Velcade at Princess Margaret in toronto. It's difficult to think of velcade as being late stage treatment and I'm afraid if it fails. My mom was always very active and now she in hospital due to swollen leg caused by a blood clot caused by the pelvic tumour....I'm devastated, she is my life. I hope that velcade works. I pray for everyone going through this, I remain hopeful and strong...I wish the same for you.

Melissa

Hi Darlene
I hope you are doing well. My mom is just finishing her 8 cycles of velcade and things are looking well. If her bone marrow test turns out positive she will be moved to once every other week treatments. Her blood counts continue to stay in the normal range. Her major complaints are fatigue , weakness, and pain in her legs. We had a rough time awhile back where she ended up getting shingles, two fractured ribs , and to top all that off pancreaitis, all in a weeks time and ended up in the hospital. After a few months of constant shingles pain, and a lower dose of velcade, she is doing as well as expected. I know her doctor is pleased. I hope your levels are staying stable. You are in my prayers.
Linda

Dear Linda,
I am glad to hear your mother is doing better. They are going to lower my velcade dose with my next treatment also. But my only side effect was neuropathy and the fact that it caused my IgG counts to go dangerously low. But my counts leveled off and I was treated with Wellburtin for the neuropathy which also helped with my fatigue. I have been extremely lucky to not have any factures. Must have been all that ice cream I ate while growing up that my mom said was not good for me. ha ha My prayers are with your mom and you also. Just keep the positive thoughts. I was diagnosed with myeloma the week after 9-11 and have thought of it as a gift of time for me, Many never get that gift they are just gone. Take care of yourself Darlene

I just read your message and it gave me encouragement. I will be starting treatment on Monday. I already had Rituxan and the Chop and was in remission for 3 years but the cancer has returned. My protein levels are up so the doctor has recommended velcade. He thinks I have Waldensterns Macrogolbulemia. It is very similar to Multiple Mylemoa so he things this will really help me. Thanks again. I'm glad to hear that it sounds easier then chemo.