One of my oldest friends is coming to visit this weekend. We’ve known each other almost 25 years now, and seen each other through everything imaginable. She knows me better than anyone, and accepts me just the way I am. It’s evolved into a totally stress-free friendship. Sure, there have been difficulties in the past, but I’m glad to say we got those out of the way 20 years ago!
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.
I often have a mild sore throat, and I’m not sure what it comes from. I’ll have to ask my doctor about it when I see him on the 23rd. Could it be a side effect of dex? It feels like my throat was burned – that same feeling you’d have if you swallowed some hot tea. I’ve also had the same sensation on my tongue. I do have a bit of candida on my tongue (thrush), so maybe that has something to do with it. It never lasts more than a few days at a time.
I’m tired today. I took dex last night about 11 pm and finally took 1/2 an Ambien tablet a little after 2 am. I was up at 6:30, because the Collie monster (aka Colliebear, Collie, Colliewog) had to go out. Once I was up, I figured I might as well take my pills. Later on, I’ll tell you what I take and what it’s supposed to do (with pictures). Most are supplements intended to minimize the peripheral neuropathy that can be caused by Thalomid. So far, I haven’t experienced any, and am hoping I won’t. I think about 80% of Thalomid users do experience some degree of PN. I’ll have to do some research to substantiate that.
I have an appointment at 2:30 this afternoon to have my INR checked again. I hope it’s improved.
We saw a good movie this weekend. If you like family type movies (no cursing, violence, etc), see the Rookie, with Dennis Quaid. He’s one of those people who gets better looking with age. ;)
In May, I sent out 40 letters to friends, family and business acquaintances in an effort to raise some money for the IMF. Aside from family members, only 4 people sent in contributions. Those are some special people, and I am sending each one a thank you card. The fund drive continues until August 10th. I hope more will respond. Would it not be difficult to help someone you actually know? I’m trying to figure out why some people don’t contribute. If you want to help, send me your name and address, and I’ll get a letter and envelope off to you immediately! Maybe the letter wasn’t appealing enough. Here’s the letter I used (written by the IMF)
Dear ?First_Name?:
Over the years, we have all contributed to many good causes. Now I have a more personal cause. Along with 15,000 other Americans per year who are diagnosed with multiple myeloma, a cancer of the bone marrow, I need your help. The cause of the disease is unknown and there is no known cure. We need more research to find a cure and to develop better treatments for this disease.
There is hope. As a member of the International Myeloma Foundation (IMF), a non-profit organization founded in 1990, I have benefited from a variety of IMF education, research and advocacy programs. I am impressed with the courage of the patients I?ve met, as well as with the volunteers and the small staff that run the IMF. This organization has enabled me to take control and keeps me informed about what I can do regarding the treatment and management of my disease. I?ve also learned that to find a cure, we have to take control of funding more myeloma research. A donation from you will make a difference.
I am asking you to participate with me in Myeloma Awareness Week?s fundraising campaign. People from all over the U.S. are sending out letters like this to everyone they know. Please make your donation to the International Myeloma Foundation before August 10th, 2003. An envelope is enclosed for your convenience. The grand total of the funds raised will be announced during Myeloma Awareness Week. Thank your for your friendship and support.
Does anyone have any suggestions?
I was recently looking through a vitamin catalog, and found an item called MGN-3. MGN-3 enzymatically integrates rice bran with medicinal mushroom extract via hydrolysis. The claim is that it triples natural killer (NK) cell protection, enhances B-cell & T-cell activity and increases interferon levels.
–> Lane Labs, manufacturer of MGN-3
One multiple myeloma patient was a 58-year-old man diagnosed in 1990.
He under- went several months of chemotherapy following his diagnosis.
Although his condition seemed to stabilize, his blood still showed markers
for multiple myeloma eight months after chemotherapy.
He then began taking MGN-3 and in less than 6 months, follow-up lab work
showed no indication of cancer. Today eight years after his initial
diagnosis, he is the first patient known to have survived multiple myeloma,
according to Dr. Ghoneum.
From http://research-data.com/Latest-Findings/MGN-3-Natural-Pharmacy.htm
(Dr. Ghoneum is the developer of MGN-3)
The FDA is taking action against Lane Labs, a manufacturer of MGN-3:
–> The story from Natural Products Industry Insider
–> Quackwatch article from 2001
Is MGN-3 waste of money or could it possibly be helpful? I did a search on the ACOR listserv for MM, and came up with a few real life stories. Rather than quote them here, you can do your own search and read for yourself.
Based on what I’ve read, it’s not known to have any harmful side effects and doesn’t appear to intefere with treatment. You would have to make up your own mind about whether or not to give it a try, after having consulted with your oncologist. I’d be interested in hearing from anyone who has been using it.
My nephew is going to be attending a school in Greensboro, NC next year. It’s not too far from here, so we may get to see him more often! AHA
This is where I went to school for most of high school. Why I left is a long story, having to do with misbehavior. It was a long time ago!
From Bob, on the ACOR MM list:
Date: 2003-06-30
New Study Demonstrates Bone Protein Can Reverse Kidney Failure
BOSTON – A new study led by investigators at Beth Israel Deaconess Medical Center (BIDMC) has shown that a protein used to heal fractured bones is effective in repairing and reversing chronic renal disease, a leading cause of morbidity and mortality throughout the U.S.
These findings, which are reported in the July 2003 issue of Nature Medicine, could help lead to the development of a therapeutic alternative for the nearly 300,000 kidney disease patients who are currently undergoing dialysis.
“Dialysis is not really a treatment, it’s just a means of survival until an opportunity for a transplant opens up,” notes the study’s senior author Raghu Kalluri, Ph.D., director of the Center for Matrix Biology at BIDMC and Associate Professor of Medicine at Harvard Medical School. “This is a very tedious way of living life,” he adds, explaining that the process of
mechanically filtering blood through a machine to remove waste products must be performed several times a week for a period of three to four hours per visit, posing risks of infection and other side effects. Furthermore, the procedure is extremely costly.
The kidneys function as a filtration system, keeping the body’s blood supply healthy by removing excess fluids and wastes, as well as by producing hormones. When kidneys “fail” – as can result from complications associated with diabetes, lupus or several other diseases – harmful wastes accumulate in the bloodstream, excess fluids build up in the body, and red blood cell production is impeded. Once chronic kidney disease develops, it cannot be reversed or repaired; when the organs cease to function, patients have no alternative but to undergo dialysis while awaiting a kidney transplant.
This new study looked at the role of a molecule called bone morphogenic protein (BMP)- 7 which, in its recombinant form, has been approved by the U.S. Food and Drug Administration for the treatment of bone fractures. Earlier studies had revealed that BMP-7 is highly expressed in the kidneys of healthy individuals. “We wanted to learn if this protein was somehow offering protection against kidney injury,” explains Kalluri.
The investigators used mouse models of chronic renal injury, characterized by the presence of scar tissue known as renal fibrosis; once kidney disease was well-established in the animals, they administered human recombinant BMP-7.
“We found that in the kidneys, BMP-7 reverses a process known as epithelial-to-mesenchymal transition, which generates scar-causing cells known as fibroblasts,” says Kalluri, explaining that BMP-7 first reduces the number of the fibroblast cells, and then replaces the damaged areas of the kidney tubules with healthy epithelial cells. “In effect,” he adds, “BMP-7 is decreasing the bad cells [in this context, fibroblasts] and converting them into good cells [in this context, epithelial cells].”
Although therapies exist to slow progression of kidney disease, once it has developed it becomes intractable, eventually leaving patients no alternative but to undergo dialysis. “The possibility of creating a cost-effective drug that would actually reverse renal injury could significantly reduce the need for dialysis and significantly improve the quality of life for these
patients,” says Kalluri.
### Study co-authors include BIDMC investigators Michael Zeisberg, M.D., Jun-ichi Hanai, M.D., Hikaru Sugimoto, M.D., Ph.D., Tadanori Mammoto, Ph.D., David Charytan, M.D., and Frank Strutz, M.D.
This study was funded by grants from the National Institutes of Health, Deutsche Forschungsgemeinschaft, and support from the Center for Matrix Biology, BIDMC. Ortho Biotech Products, L.P., is the exclusive licensee of BMP-7.
Beth Israel Deaconess Medical Center is a major patient care, teaching and research affiliate of Harvard Medical School, and ranks third in National Institutes of Health funding among independent hospitals nationwide. BIDMC is clinically affiliated with the Joslin Diabetes Center and is a founding member of the Dana-Farber/Harvard Cancer Center. BIDMC is the official hospital of the Boston Red Sox.
Editor’s Note: The original news release can be found here:
http://home.caregroup.org/newsnow/pr_out.asp?pr_id=431
I’m getting closer to my doctor’s desired INR for me. I’m now at 1.99, and he would like to see me between 2 and 3 (but closer to 2). I’ll stay on 10 mg of coumadin a day for now, to see if that gets me to 2.
We had a tornado in the area today. I didn’t know about it until I arrived at the clinic and saw that the lobby was virtually empty. They cleared people out as a precaution. It turns out the tornado was just passing by. It didn’t touch down.