Month: September 2003

It seems like it must be SCT season. Lots of people on the list are going through them right now. Dan is home from his, after 17 days in the hospital. I wish I wasn’t so afraid of the process. In some ways, it would be good to get it over with. I guess I want to know how my disease responds to treatment and have some idea about relapse times. I know someone who had 2 years of remission from VAD. I would guess there are people who have had lengthy remissions from thalidomide and dex. If that’s possible, then I want to avoid the toxicity and complications that come along with SCT as it’s currently done.

My doctor says there’s no rush to worry about stem cell transplant right now. He thinks my MM is stable, and the IgA is slowly going down as a result of 5 months of the thal/dex combination and Zometa.

Doc says IgA was 781, so it has resumed its downward course somewhat. Lots better than where it started, at 4625 at the end of January!

I’m hoping it’s the dexamethasone that’s largely responsible, because I’m afraid I might have to stop the thalidomide before it causes too much damage. I think I have the start of PN in my hands & feet.

I had my monthly appointment with Dr. Orlowski at UNC yesterday. I expect to hear that my IgA is down again, based on the fact that my total protein is down again (6.5 g/dL). Albumin is also down. I’ll post the whole report once I have all the numbers back.

Dear subscribers, one of the key issues that we are faced with at the
Cleveland Clinic is where do we stand from the issue of using vitamins.
Vitamins are critical for health and disease, however are tricky to use as
too much could be problematic and could result in significant side effects
that at some stage could be irreversible.
The following two links will address the role of vitamins and iron in
anemia, as well as a general view of vitamins in general.
Our group at the Cleveland Clinic hope that this information will be
helpful to you and your loved ones.

http://www.clevelandclinic.org/myeloma/anemiaANDvitamins.htm

http://www.clevelandclinic.org/myeloma/vitamins1.htm

Thanks again for your interest in The Cleveland Clinic Multiple Myeloma
Center.
Mohamad Hussein

I’m trying to get more information to build a web site. Please have a look and contribute any information you have that you think could help others. http://www.mmsupport.net/

Dan B. is undergoing his SCT now in Utah. To read about his experiences, you can go to http://www.mustard.com/myeloma.html.

The stem cell transplant is a very scary thing, if you ask me. It can provide some years of event free survival. The average is about 18 months. Some people get more, some less. A few get no benefit at all. There’s no way to predict. However, the transplant doctor I met with at UNC said that my prognostic factors and good health (other than cancer) give me a good chance for a nice remission after SCT. No guarantees, of course.

Monthly dex pulse: On September 1st, I started monthly dex pulses. I used to take 40 mg once weekly. It wasn’t as bad as I remembered my initial dex pulses to be. When I first started taking it in April, it was 4 days on, then 4 days off (4 times). I saw my acupuncturist 3 of the 4 days, and I was able to sleep every night without drugs for at least 4-5 hours.

Big storm: Last Thursday there was a big storm that took out my wireless router, my TiVo/satellite receiver, broadband modem and garage door. I spent an hour on the phone with tech support. I don’t live inside my own DSL service area, so I have to get Internet service from someone else. I already knew that the ethernet interface on the modem was bad, but you have to jump through all kinds of hoops to convince them that you didn’t do something stupid that caused your service outage. DirecTV has a special deal on the TiVo/receiver replacement and installation, and someone will be here Wednesday to install. I’m so used to being able to fast forward through commercials!