Month: April 2006

Revlimid

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.

Phosphorus

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!

Relay for Life Survivor Reception

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.

Pre-need

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.

Rev/dex EAP and sinking phosphorus levels

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.

Insurance

Well, my insurance won’t pay for a stem cell harvest unless it’s followed by a stem cell transplant, so I have a lot of thinking to do. If I were to pay for a harvest on my own, it would be about $10,000. That’s not something I can afford right now. I’m still in the Rev/dex EAP, so I have time to think about this. I’m responding pretty well, so I don’t want to change anything right now. My doctor agrees that SCT is something I have to some day, but he thinks the sooner, the better. And he did say they would try to get enough stem cells for 2-3 transplants for the future. I just have a lot to think about.