Beth Morgan Multiple Myeloma Treatment Blog

I’m 99.99% sure I’m going to go ahead with a stem cell transplant. There just doesn’t seem to be any other chance at a prolonged and drug-free remission. Of course I know that the possibility of no remission at all exists. I believe I would at least get a near complete remission, because I did get a pretty good response with the minimum dose of Thalomid + dex.

This is quite a change from the way I was thinking in January, 2003 and for most of the time thereafter. It’s the dex that did it. I’m near the end of what I can tolerate. It’s just wearing me down.

SCT is a very, very scary thing for me. I don’t like the idea of being in the hospital for 3 weeks and then having to stay in Chapel Hill for another 2 weeks. I don’t like being out of control of my life like that. I’ve never had chemo, let alone a lethal dose of chemo. I have this really unrational fear of vomiting too. It may sound weird, but it’s true. It’s called emetophobia.

I have an appointment with a doctor at UNC’s BMT center to talk about this again and possibly set a date and get my questions answered.

Dr. Hussein, at the Cleveland Clinic, has published some information in something called Peer View in Focus. The article of interest is called “New Treatment Strategies for Multiple Myeloma.”

Something that really caught my eye about DVD was this:

The median time to progression was 23.1 months, and the median survival had not yet been reached at 60 months. Progression-free survival was 42% at 2 years and 23% at 3 years. Two-year and 3-year survival rates are estimated to be 79% and 67%, respectively. Median follow-up among the patients still alive is 62.0 months (range, 50.9-70.3 months).

He also says he believes that DVD with Thalomid appears to be as effective as a single atuo transplant. That’s my interpretation – so please do read it and draw your own conclusions.

Here’s a link to the publication. I hope you’ll read it. Let me know what you think!

I can’t stand self-help books. I especially think the business “self-help” books are a joke. The truly successful business people are too busy being successful to write books telling other people how to be like them. They may have someone ghost write their autobiographies, but they’re not sharing their business secrets with us, are they?

I had an appointment with my local oncologist today. We had a few minutes to talk. There’s not much going on in my treatment and my condition is fairly stable.

The steroids are my main problem. :( I have such a struggle trying to decide what to do. I could get off the steroids if I had a transplant. You might be wondering what’s the big deal about taking steroids. I suppose there are worse things. I’ve forgotten what I look like without the Cushingoid features.

Starting Wednesday, I’ll be working with a local man to help me overcome my fears about stem cell transplant. He’s a Buddhist, and does hypnotherapy, relaxation and other things to teach people how to overcome stress and pain. I need to be able to put my fears aside so I can move on.

The last few months, I haven’t had a measurable m-spike, but I still have an elevated serum IgA (1177 mg/dL this month – usually in the 900s). My doctor is going to have me start the freelight test, starting next month. Here’s what he said about this month’s test:

“The SPEP was read as showing a monoclonal protein, but it overlapped other normal proteins in the beta region and they could not get an accurate densitometry done to come up with a number value. This is not at all unusual for patients with an IgA myeloma, unfortunately. I did look at it and visually the amount did not seem large, and also was not increased to my eye from prior electrophoreses. It might be helpful in the future for us to follow your disease with a serum free light chain assay. I will have that done next time, though for this time it is unfortunately too late.”

BTW, I had been taking just dex 2 days a week. 40 mg on Friday and 20 on Saturday. The longer I’m on dex, the less I can tolerate it, so last month I went to just 40 mg a week. That explains the increase in IgA. My IgA has been in the 900s for about a year now. It had been a little lower (800’s a few times & 700s once) when I was still taking thalidomide. I’m going to go back to the twice a week thing. Does anyone have ideas for any other dosing schedules? Would it be easier to split up the doses and not take them on consecutive days?

Also, I do have high blood sugar when I take dex. Not high enough to treat, according to my endo, but can get up to 200 on dex days if I’m not careful!

I spent most of the day sitting. I was either driving or waiting for a doctor or an infusion. I had Zometa today at UNC, and I liked it there. I have been having the infusion every 4 weeks in Pinehurst. The facility in Pinehurst is very nice, but I need to save a few bucks, and the cost is higher there. Believe it or not, it’s over $2,000.00 for a 9 mg dose. At UNC I think it’s under $1,800.00. The nurses at UNC a very nice, and they have a great sense of humor. I went to have my infusion with J.W., and we spent most of the time talking to the nurses and to each other.

My IgA was up a bit – about 200 mg/dL. I know why. I cut my dex from 2 days a week back to one. Dex is a very hard drug to take, and it seems to get harder for me the longer I take it. The thought that I may have to take it for years sort of makes a stem cell transplant look appealing.

I refinanced my house. I started trying to do it back in March, when rates were really low. The mortgage company I chose seemed to bumble everything. I couldn’t believe it. By June 1st I decided they needed the boot. I want to recommend my new company for anyone who’s looking for a mortgage. It’s called Countrywide. It took them no time at all to get me refinanced.

For a while now I’ve had a sore left foot that seems to get worse when I walk. I had worked my way up to walking 2 miles a day, and I had to cut back to a mile a day due to the pain. When you have MM, you worry about anything that hurts, and the best thing you can do is have it checked out. I had it looked at over a year ago, and it was arthritis.

The dex seemed to take care of it pretty well. When dex no longer gave relief, I saw that as a sign that I needed to go back to the doctor. I saw a foot & ankle specialist in Pinehurst, and he x-rayed my left foot again. It’s still arthritis, but he’s also going to do an MRI to make sure there’s nothing the x-ray isn’t showing. He said the x-ray showed no lesions, for which I’m grateful! I just never understood that arthritis was so painful! Now I really do, and I sympathize with the folks who have it.

I haven’t been prescribed any treatment for it, and I don’t really know what that would be. Do they use Celebrex for that? Is it my imagination, or have I read that Celebrex is also used to treat MM in some cases?

I was up too late because of dex, and now I’m up too early. I really better try to sleep again. I can’t get by on little sleep like I could when I was younger. If I don’t get at least 8 hours of sleep a night, I just feel terrible. Remember when you were 20 and could get by on no sleep, or just a few hours? Those were the days!