[Roxie]

Multiple myeloma diagnosis after 20 years of anemia

by Roxie on Mon Jul 04, 2016 1:35 am

Hi All,

I have recently been diagnosed with multiple myeloma. Prior to this, in 1996, I was diagnosed with hemolytic anemia (an autoimmune disorder where my body was destroying my red cells). In 2010, my diagnosis changed again, from hemolytic anemia to red cell aplasia (where I was making very few red cells). For the past 20 years I have been receiving 2 units of blood every 3 to 4 weeks. I am wondering if anyone has had a similar history?

At this point, I have no bone or kidney problems. My M-spike has been rising for the past several years. It is now 0.7 g/dL (7 g/l). I believe what the doctors are really concerned with is my lambda count, which is 2990.0 mg/L. Dana Farber, as well as the Mayo Clinic, have both recommended Revlimid, Velcade and dexamethasone. Dana Farber says a stem cell transplant is not an option, because my stem cells are not producing red cells. I will be starting the treatment regimen within the next few weeks. However, I will be receiving the Velcade one day per week, and 15 mg of Revlimid, because of the red cell aplasia. I'm wondering if I will need transfusions sooner rather than later, and I'm also concerned in general about the side effects of the treatment regimen.!

I am so concerned with the side effects of the treatment! So many concerns and questions.

Can't tell you how happy I am to be a part of this forum!

[Wobbles]

Re: Multiple myeloma diagnosis after 20 years of anemia

by Wobbles on Mon Jul 04, 2016 6:45 pm

Hi Roxie,

I’m quite new to multiple myeloma, having been diagnosed only about three weeks ago. But I am familiar with anemia. Like you, I also have been dealing with low hemoglobin levels for a long time. My anemia started 12 years ago and slowly got worse. I began to receive red blood cell transfusions when my hemoglobin level went below 85 grams per litre. That was 6 years ago.

I initially started at 2 units of RBC’s every 4 weeks. Nowadays, I get 3 units every three weeks. I was thinking of going to 2 to 3 units every two weeks as my recent levels have sunk to 70 g/L level. That causes me a lot of troubles regarding my energy level, walking up stairs, etc. I am sure you know all about that.

Like you, I also worry about side effects of chemotherapy. I do get some comfort when I realize that the health professionals have a vast body of experience in dealing with these issues. And of course, this website seems like a great place to learn about the side effects and various approaches to dealing with them.

Good luck on your journey,

Joe

[Arizonan]

Re: Multiple myeloma diagnosis after 20 years of anemia

by Arizonan on Mon Jul 04, 2016 10:42 pm

Roxie and Wobbles,

RVD is not so bad. The Velcade will probably be given subcutaneously, and, after two years of Velcade, I had no problems. If you experience problems with Revlimid, they will just lower the dose. The dex will give you some insomnia, etc., but they can also lower this dose if necessary.

RVD is very effective, and I think you will do well on it.

David

[Smile001001]

Re: Multiple myeloma diagnosis after 20 years of anemia

by Smile001001 on Thu May 31, 2018 10:53 am

Yes, I have had genetic hemo­lytic anemia and I have been wondering if it caused multiple myeloma as well. It seems to me if your blood cells have functioned abnormally for years eventually some­thing like multiple myeloma could happen due to the weakness genetically in that part of the body. Another potential cause. I have always eaten healthy and been very healthy and this was the only thing on my blood work that was problematic.