Category: General

I had an appointment with Dr. Comeau at the UNC BT Center today. I liked the staff there. Everyone was extremely nice. UNC does their transplants inpatient, rather than outpatient (like Duke). I have a lot to think about. I learned something that I didn’t know before today. The first thing was that my bone marrow biopsy in February indicated 60% plasma cells, rather than the 30-40% I was originally told. I was also told that there was no iron store in my marrow at the time. What’s odd is that I have never been anemic! Anyway, I need to have another bone marrow biopsy in the next month or so to see how it’s coming along.

Overall though, the doctor told me I have excellent prognostic indicators. My beta-2 microglobulin was low (now normal). My c-reactive protein is low. I have no chromosomal abnormalities. I’m young and otherwise healthy. He showed me some studies that have been done pertaining to stem cell transplants.

I’m not ready to do this in the next month or so. I know that for sure.

A few days ago I posted an entry about how my serum IgA didn’t move down between last month and this month. Here’s what my Dr. has to say about that:

It is not unusual for the rate of response to vary somewhat with time,
and it is quite possible that the next month’s value will be
significantly lower. If not, we may consider using a more dose intense
steroid regimen (I typically start patients at 40 mg po wd of Decadron x
4 days, then 4 days off, then 4 days on, then 4 days off, and one more 4
day on period per month, or about three times what you are doing now).

This was posted on the MM listserv at acor.org. I wanted to pass it on, because I know there are many out there who are not on the list.

Just a heads up to anyone who served in Viet Nam during that conflict or
Korea during 1968-69. The military has admitted to spraying Agent Orange in
those two locations and if a person has Multiple Myeloma and was in Viet
Nam, they are “presumptively eligible” for VA disability compensation. In
other words, the military has acknowledged that the link between exposure to
Agent Orange and a person contracting Multiple Myeloma (even 35 years
later!) is strong enough that they will generally not contest a filing for
benefits. If you were in Korea during 1968-69, and were on or near the DMZ,
then there is also a very good chance of getting disability benefits.

These can be as high as $2,500 per month or more, depending on what
secondary conditions one might have (including Peripheral Neuropathy,
depression, sleep apnea, erectile dysfunction and being “homebound”, to name
a few). THESE BENEFITS ARE NON TAXABLE AND ARE IN ADDITION TO ANYTHING ONE
MIGHT GET FROM SOCIAL SECURITY. In many instances, if a person is found to
be a disabled vet, their property taxes and vehicle license fees are waived
(this is on a state by state basis). Generally the VA will also provide
full medical and dental for the vet and dependents, access to the
commissary, and educational benefits for the dependent spouse or children
under age 26.

Before applying to the VA for these benefits, you are well advised to seek
the counsel of a service officer at one of the following organizations, who
can represent you, and ensure that your documents are not “lost” after
submission:

Viet Nam Veterans of America (VVA)
American Legion
Disabled American Veterans (DAV)
Veterans of Foreign Wars (VFW)

The VVA was very helpful to me, even though I served in Korea. Last week I
received an award letter stating that I was 100% disabled due to multiple
myeloma, and another 90% disabled due to various secondary conditions.
While you can only draw benefits at the 100% level, some of the conditions
qualify for what is known as Special Monthly Compensation (SMC), which
raises the compensation to a dollar amount greater than the 100% disability
rating. You can also increase the compensation if you can show that your
spouse is a dependent (+$125).

There are other conflicts where the VA has recognized certain conditions
were caused by the environment of the conflict, including World War II, some
of the testing areas at US bases, and the Gulf Wars (I and II). If you
think you MIGHT qualify, it is certainly worth an inquiry. The veterans
organizations listed above are usually co-located with the VA Regional
Offices and can provide good insight. BEWARE, the Korean connection is
recent, and some offices are not well informed regarding that. If you were
in Korea, on or near the DMZ in 1968 or 1969, do NOT take no for an answer.
The internal directives are clear that these cases shall be given priority
processing and attention.

Just wanted to post this info, as it is little known, and a potentially
tremendous resource to a few of us.

Tom Courbat has written a good article for Cancerlynx. It was posted in May, 2003, but I just found out about it.

Click here to read the article in a new window

This is the van I got to replace the other one, which didn’t have cruise control. Originally, I was told that cruise could be installed. After waiting a few months for the cruise control to be installed, I finally lost my patience (on a dex day) and called the dealership to bite off the head of the salesman. I had to leave a message on his voicemail. Darn. Anyway, a few days later he called me back to tell me that there wasn’t going to be any aftermarket cruise control for the 2004 Siennas. I don’t know about you, but I have to have cruise control. Without it, I’m going to get speeding tickets.

On Tuesday morning I have an appointment at the UNC BMT Center with the new doctor there. I’m not sure of the spelling, but it looks like his name is Terry Comeau. He’s not listed on the web site yet. http://cancer.med.unc.edu/patient/programs/bone-marrow.html

This appointment is for information gathering and to get a tour of the facility. Like I’ve said before, I’m not ready for this big step yet. That doesn’t mean I don’t think about it every single day though. Unless some more breakthroughs are forthcoming, there will probably be a stem cell transplant in my future. I wouldn’t be surprised if the eventual cure for MM is a SCT in combination with some other kind of therapy.

There’s a short article in the latest issue of Vegetarian Times magazine that reports the findings of a UW Madison study done on the effects of meditation on the immune system. What the researchers did, was have 25 participants engage in an 8 week meditation training program (16 people in another group did not meditate). After the 8 weeks, the participants were given a flu vaccine. Based on a study of the participants’ blood, those who meditated had a higher level of resistance to the flu and had better immune function.

I think there’s no argument that we all possess some ability to influence our health through things like meditation. It’s well documented that depression can adversely affect one’s health. The mind does have a big role in keeping us well or helping us heal.

I haven’t done anything with meditation. I have just used some hypnosis and guided visual imagery over the past several months. I thought it was time to try meditation. Since I have a limited attention span due to drugs and can’t seem to get past the first paragraph of any book, I chose an audible book so I can try to learn how to meditate. I bought The Beginner’s Guide to Meditation, by Shinzen Young.

I got the results from Dr. Orlowski from my labs yesterday. The IgA is about where it was last month. It’s at 824 mg/dL (was 829 last month). This is the first month since I started treatment that it didn’t go down. At least it didn’t go up, and I’m grateful for that. I’ll see if the change in the way I do my dex pulses will help.