Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

Finally

At last – after more than a month on Coumadin – I have an INR over 2. I take 10 or 12.5 mg/day of Coumadin now, and hope that will keep the INR where it needs to be.

Progress

I had good news today. Dr. Orlowski called to tell me that my serum IgA is now at 829 mg/dL (ref range 40-390). I started out in January at 4,625 mg/dL. I’ve been on 50 mg Thalomid daily since April 4th, and 40 mg dexamethasone weekly (after the initial 4 cycles of 4 days on and 4 days off). I also have Zometa every 4 weeks.

Velcade notes

Since there are several hundred readers of this blog every month and it’s well indexed in the search engines, I wanted to include this from a member of the ACOR MM mailing list. Please discuss anything that has to do with your care with your doctor. This is just information from another patient and must not be taken as medical advice. The same goes for anything else on this site.

After six cycles of Velcade my IgA is 25, from a
starting level of over 3000 in early March. I feel
great. For this entire cycle I have received a whole
liter of saline hydration with each Velcade
injection. I have had no side effects whatsoever,
other than the temporary worsening of Thal-induced pn
and shingles phn. This resolves in about 48 hours.
When I received a smaller amount of hydration during
the first several cycles, I often had mild to
moderate flu-like side effects of low fever, body
aches, fatigue, and malaise. I strongly urge anyone
who is beginning Velcade to ask your doctor to order
a liter of saline each time, set up as a pump
infusion over about one hour.

Sleep is elusive

I need to find something to help me sleep on Monday nights. I have tried Ambien and Xanax, and neither seems to help me get through the entire night. One of the problems is that when you drink the amount of water I do, you have to get up in the middle of the night to go to the bathroom. Dex also causes me indigestion and sometimes a little stomach upset. I have an rx for 150 mg Zantac, and it’s usually pretty effective. Sometimes it’s not, like last night, and that interferes with sleep too. I was up at 3:00 am and have some things I need to go out and do before I can try to sleep again. Then at 3:00 pm, I have a dentist appointment. I go 3 times a year now.

24 hours and the jug

Today I have to start collecting urine for a period of 24 hours to be tested or proteins. This is oe of the things I dislike most. Well, maybe it runs behind bone marrow biopsies and dexamethasone. Probably a lot of other thigs I haven’t even experienced yet. I usually just stay home so I don’t have to worry about keeping the jug handy and how to keep it refrigerated.

After I’m done tomorrow morning, I’ll take it to UNC with me in a cooler and hand it over to the nurse there so it can be sent to the lab for testing. Like most of you, I drink about 3 liters of water plus other liquids during the day. I need to have 2 jugs! The first time I did this, I had no idea, and I only had one. Now I make sure to ask for 2.

Turmeric extract

Natural Heath magazine had an article this month about the possible benefits of turmeric (curcumin). Th article is entitled, “Prevent Cancer with Turmeric.” It appears on page 28 of Natural Health’s August 2003 issue. It’s not online yet, but their web site is http://www.naturalhealthmag.com

If you’re interested, please contact me, and I’ll email a copy to you to read.

Some highlights are reports of tests done on mice with colon and prostate cancer. Nothing about MM here, but we do know about some in vitro tests done at MD Anderson with human myeloma cells. The article’s author (Meghann Peterson) says, “Research strongly supports turmeric’s antioxidant benefits. It could help prevent and treat cancer, but more human studies are needed.”

More fundraising

My sister let me know that she sent out 20 letters for the IMF’s “Mail for the Cure” campaign. Like I said before, I sent out over 40 letter myself, and had 8 responses. I took it personally, since I know everyone I sent letters to!

Mail for the Cure

IL-6

NEW YORK (Reuters Health) – Research has indicated that chronic stress can take a hefty toll on a person’s health, and a new study offers one potential reason why.

Investigators found that older people under chronic stress had higher-than-normal elevations of interleukin-6 (IL-6), an immune-system protein in the blood that promotes inflammation. IL-6 has been linked with various age-related conditions such as heart disease, diabetes, osteoporosis, frailty and certain cancers.

“This is how chronic stress can really affect health,” said study author Dr. Janice K. Kiecolt-Glaser, a professor of psychiatry at Ohio State University in Columbus.

This is from the American Cancer Society site: “Do We Know What Causes Multiple Myeloma?”, growth of this cancer is stimulated by interleukin-6 (IL-6), a hormone released by certain bone marrow cells. Treatments to block this hormone’s action are being tested in clinical trials. One effect of IL-6 is to stimulate angiogenesis (blood vessel growth). This leads to more blood delivered to tumor cells, which can increase their growth.

Chronic stress elevates IL-6, and IL-6 stimulates the growth of MM?