Category: Myeloma


Treatment with anti-anemia drugs may not be safe for multiple myeloma patients

How will this affect the treatment of anemia? Will it mean more transfusions and less ESAs? I’ve only ever had a few shots of Procrit, and have never had red blood cells (just platelets). What I’m afraid will happen is that people will be afraid of ESAs. If you think about it, the statement at the end of the summary makes a lot of sense. Were the patients in the group who were given the ESAs just more sick, with a poorer prognosis?

Public release date: 4-Aug-2008

Contact: Sean Wagner
Treatment with anti-anemia drugs may not be safe for multiple myeloma patients

Thessaloniki, Greece – August 4, 2008 – A recent study published in American Journal of Hematology demonstrated that Erythropoiesis-stimulating agents (ESAs), a widely used drug to treat anemia, may have a negative impact on the survival of myeloma patients. In the study, 323 multiple myeloma patients were evaluated over a 20 year period in Greece from 1988 to 2007. The investigators reviewed their medical records and observed an association between ESA exposure and a reduction in progression-free and overall survival.

The study demonstrated that ESA administration may influence the course of the disease, in that people who received ESA may progress earlier than those who did not receive ESA. The median survival rate was 31 months for patients who were administered ESAs, compared to 67 months in those who were not exposed to ESAs. The median progression-free survival for patients in the ESA group was 14 months, and 30 months for those without ESA exposure.

For the past 15 years, erythropoiesis-stimulating agents have been used in the management of cancer-related anemia, but researcher Eirini Katodritou stresses the possible harmful effects ESAs may have on cancer patients. “Physicians should use ESAs with caution, based on the International Guidelines for ESA administration in cancer and on certain prognostic indicators to guide their use. Physicians need to identify the appropriate group of cancer patients who will benefit from ESA administration, while avoiding possible detrimental effects,” said Katodritou.

The question of whether ESAs are harmful in patients with myeloma is a pressing clinical issue with at least eight prospective controlled clinical trials in the last five years reporting poorer outcomes with ESA use in patients with cancer, according to Dr. David P. Steensma of the Mayo Clinic. However, only two of those studies included some patients with myeloma. Dr. Steensma pointed out that the patients in the retrospective Greek study were imbalanced for many of the known prognostic markers in myeloma, indicating that sicker patients were given ESAs preferentially and that this group would have been predicted to do more poorly anyway. Although this imbalance might explain the results, Dr. Steensma discussed the importance of additional prospective studies of ESA safety in myeloma and other forms of cancer.


My doctor is retiring

We recently learned that our local oncologist is retiring.  He’s 52 years old and has had it with the medical profession, citing increasing difficulties with insurance companies and litigious Americans as a few of the reasons for early retirement.  I’m really going to miss him.  He was probably the best doctor I ever had in my life. He shoots straight from the hip and tells it like it is.

I’ll continue with my quarterly visits to Duke and will see the replacement doctor at this local practice every few months.

No blood was drawn, so it’ll be September before I have any test results to share again. In the mean time, I’ll assume I’m still stable and myeloma will stay in the deeper recesses of my mind.  It’s been a pleasure to have been treatment free for almost a year now. I still have myeloma, but it’s been sitting still.

How Molecules Out Of Balance Lead To Human Multiple Myeloma And Other Cancers

ScienceDaily (2008-07-28) — An international team of scientists has identified processes that are heavily implicated in human multiple myeloma and other B cell cancers, moving us closer to developing quick tests and readouts that could help in the tailored treatment of patients.

“We already know that the over-expression or mutation of molecules known as NIK and TRAF3 in B cells is associated with human multiple myeloma,” said Professor Mackay. “Our collaborative research uncovered two distinct processes involving these molecules that help explain why.”

News about Stan Winston

The news has been filled with reports about the death of Stan Winston from myeloma the last few days. I didn’t know who he was, but I saw many of the films on which he worked. As a myeloma patient though, I was more interested in his disease than his work.  I wanted to know what treatments he had tried and how aggressive his cancer was. Where was he treated?  Did he have a stem cell transplant?  Did he have any remissions during that seven years?

None of my questions was answered. I think he may have been treated at the IMBCR, because I saw that listed as one of the preferred recipients of donations to be made in his memory.

IgA is pretty stable after stem cell transplant

This is a chart of my IgA values since before the SCT last summer.  I stopped Velcade and Doxil in July, 2007 and the SCT took place at the end of August. This is quantitative serum IgA in mg/dL. The test on 10/11/2007 was the first one I had after stem cell transplant.

I’ve never once regretted having the SCT, and only wish I had done it earlier. In my case, nothing was keeping the mm under control for very long. The SCT has allowed me to be off treatment for 10 months now, which is a long time for me.

Duke allows me to look at my lab results online, and I’ve been waiting to see what my m-spikes are (I have two).  So far, they’ve stayed under 0.5 g/dL when added together.  That’s so much better than the 3.4 g/dL they were back in 2003.

IgA values in mg/dL

The reference range at Duke’s lab for IgA is 46 – 287.

Press Release from Mayo Clinic

Mayo researchers isolate compound that obstructs cell growth in multiple myeloma and other cancers fueled by certain proteins
Extract of coconut shrinks tumors by killing cancer cells

Friday, May 09, 2008

SCOTTSDALE, Ariz. — A natural compound extracted from the milk of coconuts has proven effective in curbing the uncontrolled growth of certain cancer tumors, according to researchers at Mayo Clinic.

A recently published study by Drs. A. Keith Stewart and Rodger E. Tiedemann of the Mayo Clinic Cancer Center indicates that a substance called kinetin riboside, prevents new cell growth in tumors controlled by cyclin D proteins. (Cyclin D proteins are members of the cyclin family of proteins related to cell division.) Kinetin riboside is found in minute quantities in coconut milk and other natural plants and is related to the hormones that govern root growth in plants.

The results of the study were published in the May 1, 2008, issue of the Journal of Clinical Investigation. The journal is published by the American Society for Clinical Investigation, founded in 1908 to recognize important advances in medical research. “Cyclin D is like the gas pedal for cell progression,” Stewart said. “In cancer cells, too much cyclin is produced and overwhelms the cell, causing it to grow too quickly. Kinetin riboside appears to switch that process off.”

Three closely related proteins called cyclin D1, D2 and D3 are found in all proliferating cell types and collectively control the progression of cells through their cell cycle. Since D-cyclin proteins are essential to cell division, they are implicated in certain types of cancer.

After screening more than 4,000 drugs and natural compounds for their ability to control cyclin, the study narrowed the possibilities to about 30. Eventually, Stewart and Tiedemann focused on only one—kinetin riboside—as a way to control the cyclin D proteins.

Kinetin riboside works by rapidly binding itself to the cyclin gene and switching off the normal progression of cell division. Laboratory tests on mice demonstrated some cancer cells died as a result of the process, causing tumors to shrink in size. Healthy body cells remained unaffected.

The Mayo study focused on cells found in multiple myeloma tumors, but Cyclin D1 and D2 is important in the progression of many other cancers, including breast, prostate, colon, parathyroid adenoma, certain lymphomas and melanoma.

“Kinetin riboside not only stops myeloma cells from growing, it kills large numbers of the tumor cells as well,” Tiedemann says. “Its effectiveness in controlling cyclin holds the promise of a therapy for a number of different cancers.”

The researchers are now focusing on developing modified versions of the compound that offer the same benefits but possess specific characteristics that make it more desirable for the development of clinical drugs.

More than 60,000 Americans have been diagnosed with multiple myeloma. An estimated 15,000 new cases are reported each year and it accounts for a disproportionate 2 percent of all cancer deaths. The research was partially funded by the Multiple Myeloma Research Foundation and The Leukemia & Lymphoma Society.


Mayo Clinic Cancer Center is one of only 39 U.S. medical centers that have been named as a National Cancer Institute (NCI) Comprehensive Cancer Center. To receive this designation, an institution must meet rigorous standards demonstrating scientific excellence and the ability to integrate diverse research approaches to address the problem of cancer. Mayo Clinic Cancer Center is the only national, multi-site center with the NCI’s Comprehensive Cancer Center designation. In Arizona, Mayo’s clinical and research experts work together to address the complex needs of cancer patients, with a dedication to understanding the biology of cancer; discovering new ways to predict, prevent, diagnose and treat cancer; and transforming the quality of life for cancer patients today and in the future.


To obtain the latest news releases from Mayo Clinic, go to is available as a resource for your health stories.

This is why

Last weekend was our local “Relay for Life” event, which I attended. My nephew, who is almost seven years old, went along with me. He walked with me for the survivors’ lap, which starts the relay. As the survivors pass by, the team members and other spectators usually give a big round of applause. My nephew said he was embarrassed by this and asked why everyone was clapping. I asked him if he knows what cancer is, and he said he did. I explained that everyone he saw walking was a cancer survivor and that people were applauding because we had all been successful in fighting our cancers. He asked, “can it kill you?” I said that it can, and his response was, “I don’t want it to kill you… because I love you.”

This is why we have chemo, take dex and all the other stuff we have do to stay here.

Chronic Graft vs. Host Disease Web cast

I just got this via email.

The National Bone Marrow Transplant Link is working with Dr. Steven Pavletic and his staff at the National Institutes of Health to develop a web cast on Coping with Chronic Graft vs. Host Disease.  The 30-minute presentation will provide an overview of cGVHD, recommendations for care of the cGVHD patient, and personal reflections from current cGVHD patients and their caregivers. The web cast will be launched on our web site, late this summer. We are grateful to the National Marrow Donor Program for supporting this product