Author: Beth


I was fairly disturbed when I got my mail today, and found campaign literature from a local man who is trying to keep his seat in the NC House. It’s not likely he will, because he’s in the dog house with the local Republican party. Anyway, back to the item that caused my blood to nearly boil. The campaign literature is covered with pictures of President Reagan. I remembered how the Reagan family was upset the Pres. Bush used his pictures in some campaign ad, and their spokesperson issued a press release saying that permission was needed before anyone could use his likeness. She also added that permission was not likely to be given.

I emailed the candidate and told him I thought his use of the images was opportunistic and disrespectful. (In such poor taste!) I sent a copy of my message to the local newspaper too.

Why did this make me so mad? I don’t know. Maybe it’s because I just got home from seeing Fahrenheit 9/11. I’ve never trusted politicians. The movie brought a lot of issues to the foreground for me, and I wasn’t feeling very forgiving.

MMRF Score for a Cure

The MMRF got a good plug on Fox today. Kathy Giusti was shown throwing out the ceremonial first pitch at the Mets vs Yankees game this afternoon. She did a good job! Ok, she threw like a girl, but it was just ceremonial. :) I don’t know how much money was raised, but the final score was 10-9, with a Mets victory over the Yankees.

If you haven’t made a donation to the MMRF or the IMF this year, please do so!

Here are some links to help you find your way.


Will I have a stem cell transplant?

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.

New Treatment Strategies for Multiple Myeloma

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!

Self-help Books

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.

M-spike not increased from prior electrophoreses

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!

AFLAC Flex One

I signed up for the Flex One plan through AFLAC at work. If you can get your employer to have an AFLAC rep come in to talk to the employees about this, it’s a good thing. I don’t know if they have individual plans for this. Here’s how it works. Your employer deducts an amount you specify from your paycheck, and this is before taxes. You then submit to AFLAC all your unreimbursed medical expenses and you get the money back from them in about a month. This helps me to save money on taxes. It may not seem like a lot, but it adds up. By the end of the year, I’ve paid 20% of my Zometa infusions (since it’s done in a hospital, and I’m on an 80/20 plan – it comes out to about $300 a month!). I’ve paid an awful lot of co-pays for Dr. visits and drugs too. Yes, I still have to pay, but at least now the money I’m using is tax-free. They also cover diabetic testing supplies, which I need for dex days, acupuncture and other things like that. I tried to submit my supplements, but they denied that. It was worth a try. :)

Here’s a short list of things you can be reimbursed for (and not have to pay income tax or bother deducting medical expenses at tax time.)

  • Ambulance service, birth control, contact lense solution, crutches
  • Rx drugs, elastic hose (with Rx), eye glasses/contacts
  • Acupuncture, chiropractor, psychoanalyst, hearing devices
  • Medical copayments & deductibles, smoking cessation products (with Rx)

I’ve had trouble with AFLAC a few times, with the cancer plan, but I do think they’re a good company. If you’re like me, and still in the workforce, this FLex One plan can help save a little money. Even with good healthcare coverage through BCBS of North Carolina, MM has had a pretty serious impact on my finances.

I hope this info will be useful!