I am at a motel near RDU. I got stuck in FL (not too bad) for an extra day too! The roads are just too icy here to make the drive home, but it’ll be better tomorrow. It’s so nice to be back in NC, where everything doesn’t cost a fortune and people are nice!
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’m here near Ft Lauderdale, FL to attend the IMF Conference. I must have picked up a virus on the plane though. :( I spent the afternoon and evening in bed, missing the afternoon’s events. I’m going to wear a mask on the flights home, that’s for sure. I bought some Zicam to try to fend off this cold, or whatever it is.
Beth–
My name is Leigh and I live in Cary, NC. My mom was diagnosed with MM in September. Stage III, but the doctors won’t say A or B. We initially went to Duke, also; I wanted my mom to see the “the very best.” I bet I know which oncologist you worked with; our experiences were uncannily similar!
She did two courses of VDD, both of which made her so sick she was hospitalized over a week each time. She discontinued it and started Thalidomide and Dexamethasone (with Zometa, too, of course,) in early December.
I was planning on going to the IMF meeting in Fort Lauderdale this weekend, too, but my mom was too sick to leave. I’m the only one around to care for her. I hope it’s a useful weekend for you.
Anyway, I’d love to swap experiences and info with you.
Leigh
What causes hyperviscosity in MM? A list member provided an excellent explanation:
The hyperviscosity seen in myeloma and Waldenstrom’s is not due to the number of cells but the amount of protein in the plasma. Proteins do not dissolve in a solution; they form a colloid. the more protein in a liquid the more likely it is that the liquid will form a gel just like Jello? does.
Now the proteins or protein parts found in myeloma can vary in size. Some folks have very little whole proteins in their blood; they usually have small pieces. For them, the chance of hyperviscosity is quite small. Of the five different proteins which can be the issue in MM, IgG, IgE and IgD can be thought of as single units while IgA is a double unit and IgM is a pentamer or 5 unit structure. So, if you have the entire protein present, it is most likely to hyperviscosity if you have excess IgM, more likely to have hyperviscosity if you have an excess in IgA and least likely if you have an excess of IgG, IgE or IgD.
Chemo-Stem Cell Combo Fights Myeloma – AP
Wed Dec 24, 5:04 PM ET
An unusually intensive assault on the cancer multiple myeloma — using two rounds of high-dose chemotherapy followed each time by a stem cell transplant — appears to double patients’ long-term chances of survival, a study found.
Although the approach is not a cure, doctors say the results are encouraging for victims of this usually lethal cancer of the bone marrow.
The researchers found that after seven years, 42 percent of patients who got the double treatment were still alive, compared with 21 percent of those who received the standard single round of chemo plus a transplant.
The head of a U.S. marrow transplant program said the French study is another important development in what has been an exciting year for multiple myeloma research, including federal approval in May of the drug Velcade, which targets one of the underlying defects that make this cancer grow.
If such developments continue, “I’m very optimistic that we will be thinking of this as a curable disease within my professional career,” said Dr. Edward Stadtmauer of the University of Pennsylvania’s Abramson Cancer Center.
A transplant allows a higher dose of chemotherapy, because it puts the patient’s stem cells back into the body to replace those killed by the treatment. Stem cells are a crucial component of bone marrow, which produces blood cells.
The study, led by Dr. Michel Attal of Purpan Hospital in Toulouse and published in Thursday’s New England Journal of Medicine (news – web sites), looked at 199 patients who got two rounds of treatment, and 200 who got a single set.
In addition to increasing life span, the second round of treatment doubled the chance of surviving seven years without a recurrence of cancer (20 percent versus 10 percent).
The difference was most striking for people who had not had a good response to the first transplant. Only 11 percent of those patients lived seven years without a second transplant. With a second transplant, 43 percent survived that long.
Stem-cell transplants are expensive — a single round can cost $150,000, about triple the cost of standard chemotherapy — and dangerous: Five people in each group died from the transplant itself.
“It may be that patients who are not doing well after a first transplant should automatically go in for a second transplant. That may be the most important lesson to get from that study,” said Len Lichtenfeld, deputy chief medical officer American Cancer Society.
Multiple myeloma is described both as a bone cancer and a blood cancer. It affects the plasma cells that make infection-fighting antibodies.
Instead of making antibodies against a wide variety of diseases, the cells begin overproducing one and making too little of others. That leaves patients anemic, open to infections and susceptible to bleeding. Bones become painful and brittle. Other proteins interfere with kidney function.
A half-century ago, diagnosis meant almost certain and swift death. Now, treatment can help many patients at least feel better for a while and fight off infections, keeping them alive for years and even decades.