Category: Myeloma

Myeloma

Appointment

Yesterday I was at Dr. P’s office to have some blood drawn. I’ll go back again next week for Zometa and to get the results from yesterday’s labs. I mentioned that, since I went to standard dose dex, I’ve been having a lot more problems with queasiness and nausea. They said they can call in something for me to take when I need it. They use compazine and ativan in combination. However, since I’m still in a trial, they want me to get permission from the doc at Wake Forest first.

Speaking of Wake forest, they were recently in the news. Google this: White blood cells from a strain of cancer-resistant mice cured advanced cancers in ordinary laboratory mice, researchers at Wake Forest University School of Medicine reported. And this: Wake Forest Physician Reports First Human Recipients of Laboratory-Grown Organs.

I’m lucky I live where I do. I’m within a reasonable driving distance of three really great research hospitals: Wake Forest, UNC Chapel Hill and Duke University. The Wake Forest Clinical Cancer Center is my favorite so far. :) It’s shiny & new!

M-spike from test on 5/3

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.

Hospital visit

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.

End of 4th Cycle

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.

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!

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.