[pawnee]

Severe Anemia

by pawnee on Fri Jun 03, 2011 9:40 pm

Hi all,

I'm 58 and I live in Southwest Oklahoma. Last December I first noticed a huge decrease in my endurance and overall energy. (My daughter says throughout 2010 I just collapsed into a recliner each day after work). By January I was having shortness of breath and could hear each heart beat "swooshing" through my head. On Friday, January 29th my new GP ordered blood tests. He gave me a wake-up call at seven o'clock the next morning to tell me he was admitting me to the hospital for a blood transfusion. My hemoglobin was 4.0. Five units of blood.

My IgG and monoclonal proteins were elevated, 2400 and 1.6 respectively. A cat scan revealed two spots on one lung. A subsequent wedge biopsy revealed both were benign. Several other image tests revealed no lytic lesions. The "gorilla in the room" was always the severe anemia. I've received 17 units of blood since January 30th--two units about every three weeks. My anemia has no ground floor. My immune system was basically destroying the erythrocytes while they were still immature. Five pathology reports on three subsequent bone marrow biopsies all pointed to a possible secondary challenge as the culprit in the anemia, there was speculation of ET, Myelodysplastic syndrome and aplastic anemia. MD Anderson initially diagnosed the secondary process as Pure Red Cell Aplasia (PRCA). Twenty percent of my bone marrow cells were positive. The University of Oklahoma Medical Center pathologist described my as "difficult and most puzzling". This was NOT what I wanted to hear. We don't know how to treat difficult and puzzling. I so wanted classic symptoms of something.

I began Velcade, Thalidomide and Dexemethasone in April, four cycles of four treatments. I just completed my 11th treatment. My local doctor chose to start treating me for multiple myeloma without a definitive diagnosis.

Two weeks ago, during my second visit to MDA, my oncologist determined that I definitely had Multiple Myeloma and believed that multiple myeloma alone (not a secondary process) was causing the anemia. He also wanted to add an ESA. to produce more red blood cells. I haven't yet done this. Then came the good news. The third bone marrow biopsy showed the cancerous cells reduced by 75%--while urine and blood tests showed the IgG and monoclonal proteins had dropped to 1000 and .5 respectively.

In 100 days I've gone from taking no meds to 15 pills per day--from running 20 miles per week to dealing with a pair of DVT's in one leg--lung biopsy--and the chemo bag that I guess most deal with. It's been a breathtaking rollercoaster ride for me and my wife. We're taking these early signs of remission as a most positive sign while wondering "what's next?"

[Pamela Lussier]

Re: Severe Anemia

by Pamela Lussier on Wed Jun 08, 2011 9:49 pm

So sorry to hear your diagnosis, Make sure they check the kidneys. Mine are damaged beyond repair and it could have been prevented. Sometimes multiple myeloma throws its junk in the kidneys and that causes anemia also. Praying for that this is not the case.

Best wishes,

Pam

[Jim]

Re: Severe Anemia

by Jim on Sat Sep 03, 2011 1:00 pm

Hi, Pam-

I lose energy when my cancer starts growing. When a treatment is successful, the energy comes back. After 3 treatments recently of Velcade, I'm feeling a lot stronger. Choose the most promising treatment in consultation with your oncologist and expect more energy if it works.
Otherwise, rest up and keep trying!

Jim