This is the result of my SPEP on May 3.
Hi Beth, Your results from 5/3/06:
M-spike in beta 2 = 0.2, gamma 0.1. Last results I have are on 3/8/06 when M-spike in beta was 0.3 and gamma was 0.2.
Let me know if questions.
Author: Beth
I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.
Yesterday when I had my monthly appointment, I was planning on meeting a list friend whom I’ll call B. I called B’s cell phone and the person answering told me that B had been admitted to the hospital! I found the right room and stopped to say hello. It wasn’t the kind of first meeting I hoped for, but I’m sure it wasn’t for B, either. Never-the-less, it made me realize (again) how lucky I’ve been. I did a rare thing and sent up a prayer for B, for a speedy and complete recovery.
I finished the 4th cycle of rev/dex and am now starting number 5. The good thing about this is that I am now on standard dose of dex. Thank goodness. My IgA is at 468 mg/dL now, too. The lowest yet. IgG: 273 mg/dL and IgM: 36. I remember when my IgM was too low to measure and my IgA was 4,625 mg/dL. Dr. H told me that I am having the best response, with the least side effects of all the pts in the Rev/dex EAP at their clinic.
This is just a note for anyone searching for potential side effects of Revlimid. Revlimid can cause nausea. I notice that I feel ill for a few days while I’m off steroids. The steroids actually help with the nausea. Dr. P. says that they give dexamethasone as an anti-nausea drug, so that explains why I feel ok on the days I’m taking dex. He said that he has had a few patients with MDS on 10 mg Rev/day who have had to quit because of the nausea and GI trouble. He had one pt who lost 30 lbs.
I saw Dr. P last week and we talked about the low phosphorus problem I have. He considered it very low, and prescribed something called Neutra-Phos-K for me. I dropped it off at my pharmacy, and it STILL hasn’t been filled! They say it’s out of stock. He said the mineral deficiency is due to bone loss from the high dose steroids I’ve been on for the last 4 months. I haven’t researched that yet to better understand the process. I just know that I don’t feel very well sometimes, and I think having this rx would help me. I need to pin the pharmacy down on a delivery date. Thursday I’m supposed to have another blood test!
We had a successful reception Sunday at the National Golf Club. I was glad to meet A.W., another MM patient. You’d think this would be rare, since there are only about 50,000 of us in the United States. She has been in treatment since 1998, when she had her first stem cell transplant in Arkansas. Even a second SCT didn’t give her much treatment free time. She has had about every tx you can think of, except Revlimid.
Anyway, the reception was great. The food was yummy and the company was the best. We had donations to give away as door prizes, and every single person received a prize.
Thanks to everyone who came to help.
Anyone who has ever watched Six Feet Under knows about a “pre-need.” It’s about making arrangements for your funeral before you need to. Today I made the arrangements for my final disposition. I don’t need a funeral or anything like that. I’m an atheist, so a service isn’t necessary. I’ll be cremated in a cardboard box and then my remains will be put into a smaller cardboard box and given to a family member. What I think would be nice is to have my ashes poured into the ground where a nice shrub will be planted.
This question is for anyone in the Rev/dex EAP. Has anyone else had a sinking phosphorus level? Mine has gone from 3.3 mg/dL before the trial to 2.0 in Feb and 1.3 last month. They’re only checking it every other month, so I have no results from today. My calcium is normal, but I have no idea what my vit D levels are. I need to schedule an endo workup.
I searched on phosphorus and found this info:
http://www.mmeade.com/cheat/phosphorus.html
My diet has not changed, so I can’t think of another reason for the drop.