Month: August 2003

4 days of dex

Tomorrow will be the start of 4 days of dex for me. I’ll take 40 mg (10 tablets) in the morning each day, for 4 days. I haven’t done that since April, so I’m apprehensive about it. However, changing to this schedule may be better for me than taking 40 mg once a week. The weekly dex tended to be a rollercoaster. Each week I had 2-3 unpleasant days. Taking it monthly will give me more consecutive no-dex days.

If my IgA is still unchanged as of the next test, I might try another 4 cycles of 4 days on and 4 days off to see if that has an impact.

Relay for Life

DATE 7/21/03 For more information contact:
FOR IMMEDIATE RELEASE Amie Fraley, 910-949-4000

Register Your Relay For Life Team Now

(Moore County) ˇ Moore CountyÝs Relay For Life is just around the corner. Register your team today by calling the 2004 event chairs, Amy Millard ˝949-2599 or Jackie Tyson ˝ 949-0424. This ýcelebration of lifeţ brings the Moore County community together in unified effort to fight cancer.
Former and current cancer patients, their families, businesses, civic organizations, and the public are invited to take part in this exciting team event. Relay For Life takes place from 10:00 a.m. on September 20th until 10:00 a.m. on September 21st.
Relay For Life is a family-oriented event where participants enjoy the camaraderie of a team and also raise funds to support the activities of the American Cancer Society. Participants camp out at the Relay site and when they are not taking their turn walking or running, they take part in fun activities and enjoy local entertainment.
Teams from companies, churches, organizations, hospitals, and schools collect donations and can win individual and team prizes for their efforts.
ýRelay For Life brings the progress against cancer to the forefront,ţ said Amy Millard, event chair. ýMany participants are our family, friends, and neighbors who have been cured of cancer themselves. Their involvement is proof of the progress that has been made.
ýThe funds raised enable us to continue our investment in the fight against cancer through research, education, advocacy, and services to patients,ţ said Jimmy Frye, corporate sponsorship chairperson. ýDue to the generosity of teams and corporate sponsors already committed to the 2004 event like Pinehurst OB/GYN, Merrill Lynch, St. JosephÝs of the Pines, Progress Energy and Centennial Bank, Moore County is able to heavily support the American Cancer SocietyÝs mission to eliminate cancer as a major health problem.ţ
Information about how to form a team or become involved in Relay For Life is available from the American Cancer Society at 949-4000. For more information on cancer, call the American Cancer SocietyÝs 24-hour hot line at 1-800-ACS-2345 or visit the web site www.cancer.org where you can enter your zip code to link to more information about the Moore County Relay For Life.
The American Cancer Society is the nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer through research, education, advocacy, and service.
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www.cancer.org

UNC BMT Center

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.

IgA didn’t move down from last month

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).

MM and Agent Orange

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.

Cruise control

The new vanThis 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.

Tuesday

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.