Beth’s Blog

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
swagner@wiley.com
781-388-8550
Wiley-Blackwell
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.

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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.”

http://www.sciencedaily.com/releases/2008/07/080729133616.htm

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

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.

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.

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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.

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To obtain the latest news releases from Mayo Clinic, go to www.mayoclinic.org/news. MayoClinic.com 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, www.nbmtlink.org late this summer. We are grateful to the National Marrow Donor Program for supporting this product

Kidney cancer may be linked to multiple myeloma

By Megan Rauscher

NEW YORK (Reuters Health) - For the first time, researchers have evidence of an association between renal cell carcinoma and multiple myeloma, a type of blood cancer, one that “cannot be explained by random incidence alone,” they say.

“I think general oncologists as well as myeloma and renal cancer physicians should be aware of this association,” Dr. Mohamad A. Hussein of the H. Lee Moffitt Cancer and Research Institute in Tampa, Florida, noted in comments to Reuters Health.

Renal cell carcinoma begins in the kidney cells and although it may progress slowly, it is very resistance to chemotherapy. Multiple myeloma, which may also progress slowly, is likewise resistant to treatment. It begins in the blood’s plasma cells, a type of white blood cell that is part of the immune system. Over time, myeloma cells build up in bone marrow and then in the solid parts of bone.

In a review of data from patients referred to the Cleveland Clinic between 1990 and 2005, Hussein and colleagues identified 1,100 patients with multiple myeloma, 2,704 with renal cell carcinoma, and 8 with both types of cancer.

In 4 of the 8 patients, renal cell carcinoma was diagnosed 3 to 46 months after the multiple myeloma diagnosis. In the remaining 4, renal cell carcinoma was diagnosed 1 to 108 months before the multiple myeloma. Seven of the 8 patients were first diagnosed with renal cell carcinoma on the right side.

“The probability of this association was much higher than that expected in the general population,” the researchers note in the medical journal BJU International. “No clear treatment-related, environmental, genetic or immune-mediated common factors can fully explain this association.”

The investigators point out that interleukin-6 supports the growth and expansion of both types of cancer. Interleukin-6 is a “cytokine” that normally enhances the body’s immune response to disease and infection.

“I think the take-home message,” Hussein said, “is that after active therapy for myeloma, if the kidney lesion does not clear — especially if it is affecting the right kidney — renal cell cancer should be considered.”

In this study, when myeloma was the first malignancy diagnosed, “the renal cell carcinoma was at a very early stage and therefore surgical exploration is critical.”

SOURCE: BJU International, March 2008.

Good information if you’re new to myeloma

The Institute for Myeloma and Bone Cancer Research has published some good videos which will answer some of your questions.  These were informative for me, even after having lived with myeloma for the past 5 years.

http://www.imbcr.org/myeloma_QA.html

MMSupport.net unveils “Ask the Expert”, featuring Multiple Myeloma physician and scientist, James R. Berenson, M.D.

MMSupport.net unveils “Ask the Expert”, featuring Multiple Myeloma physician and scientist, James R. Berenson, M.D.
 
Ask the Expert is a free online web-forum where Myeloma and Bone Cancer specialist, Dr. James R. Berenson offers medical answers to questions surrounding quality of life and longevity issues for patients living with this rare form of cancer.
 
Los Angeles, CA – MMSupport.net and the Institute for Myeloma and Bone Cancer Research are proud to announce the creation of “Ask the Expert”, a free online web-forum featuring Multiple Myeloma expert, Dr. James R. Berenson.
 
MMSupport.net is the creation of myeloma-advocate, Beth Morgan.  The website serves to foster community in the form of an online forum where patients and caregivers could learn more about Multiple Myeloma, a plasma cell cancer that resides in the bone marrow.  Thousands of people visit MMSupport.net every day.  Many visitors are Myeloma and Bone Cancer patients, caregivers and other medical professionals who actively participate in online discussions about treatment options and personal experiences.  “Ask the Expert” is the latest addition to the MMSupport.net website and is available at no charge by registering on the site.  Visit www.mmsupport.net for more information.
 
James R. Berenson, MD has 25 years experience in treating Multiple Myeloma and Bone Cancer patients.  Dr. Berenson is CEO and Medical Director for The Institute for Myeloma and Bone Cancer Research and CEO and President of Oncotherapeutics, an oncology-specific clinical trials management service.  Dr. Berenson is an active clinician who treats patients daily in his Los Angeles offices and acts as a specialist consult to patient’s primary oncologist or primary care physician throughout the world. For more information, visit www.berensononcology.com
 
The Institute for Myeloma and Bone Cancer Research, based in Los Angeles, California, is an independent cancer research institute with a primary focus on hematologic cancers.  Established in 2004, the IMBCR is a 501 c (3) non-profit organization.  Over the last four years, the IMBCR has created novel breakthrough therapies that have substantially increased the longevity and quality of life of myeloma patients. The latest initiative at the institute is “The Cure Myeloma Project”, a multi-year research project that targets myeloma cells while keeping the non-cancerous cells intact.  For more information or to make a donation, visit www.imbcr.org
 
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Media contact:
Beth Morgan, MMsupport.net beth.morgan@connectnc.com or,
Cheryl A. Cross, MPH, Institute for Myeloma and Bone Cancer Research ccross@imbcr.org 866-900-1035

Shingles almost gone

This is what my head looks like now.  The rash is gone.  There’s discoloration there, and the skin is extremely sensitive.  Sometimes it itches, too. I have another appointment to see the eye doctor on Tuesday, and I think it will be the last one for this.

If you’re wondering, the thing sticking out of my ear is from my iPod. This has been the first time I’ve tried to use it since before I had shingles. The virus caused pain even in my ear, which made it hurt to listen to music or even the telephone on that site. I still have headaches on the left side of my head, but they’re not as bad and not as constant as they were even a week ago.

You can see that my hair is growing. I hope to look half way normal by spring.

The picture was taken with PhotoBooth on the Mac, which, for reasons unknown to me, produces a mirror image.  So, when I talk of having shingles on the left side, it’s true.

And I thought famvir made me sick

On Friday I started taking famvir for an outbreak of shingles.  I knew from previous times that famvir gave me a pretty bad headache, but I thought I’d do it anyway and maybe this time it wouldn’t happen.  I withstood it for almost 4 full days, but then called the doctor to get something else. It was a wicked headache and I thought anything else had to be better.  I got the rx for acyclovir Tuesday and took my first dose with dinner. Pretty soon I was experiencing nausea.  Those of you who know me, know that this is a serious situation. I fought off the nausea for four hours and then finally had an episode of vomiting and diarrhea.  It was over fast, and probably not worth the four hours I spent trying to avoid it. We do what we do though, and it’s hard to overcome a phobia you’ve had all your life. This could have very well been a coincidence, but I attributed it to the acyclovir (nausea, vomiting and diarrhea are reported possible side effects).  I called my doctor the next day, and a nurse asked me if I could tolerate the famvir headache for just 3 more days.  So, I’m back on famvir now.  Just a couple of days to go.  Afterwards, I will probably take one a day to help prevent a recurrence of shingles.

The eye doctor told me that he saw no internal goings-on in my eye.  Only the exterior was affected, including the eyelid (outside and inside).  I have an antibiotic ointment to apply twice daily and a return appointment next week.

I should expect to have a complete recovery anywhere from a few weeks to 6 weeks.

I just learned that shingles’ name comes from the Latin cingulum, which means girdle or belt. There’s a lot of useful information about shingles at the FDA web site.

Eye doctor

I’m seeing the doctor this afternoon about my left eye. Here’s where I’ll be:  Carolina Eye Associates

Here’s a new picture of what the rash looks like.  Don’t click on the thumbnail if you don’t want to see it.  I think it’s hideous.  I try to stay in so that I don’t attract mobs of torch-wielding villagers out in front of the house.

I’m still taking the 500 mg  of Famvir three times a day and am taking some oxycodone as needed.  I never thought I’d say this, but I wish I had some dex.

Shingles, schmingles

I have a case of shingles AGAIN.  This time it’s on the left side of my head and face, affecting my eye.  I’m on 500 mg of Famvir, three times a day. As my doctor said, it will get worse before it gets better. These pictures don’t really quite do it justice. 

What is shingles? There’s a really good explanation of shingles here on Wikipedia.

Message from a reader

I got this message from a blog reader, Earl.  I wanted to share it.

Here is my story concerning my reversal of a pre-cancerous prostate, called high grade PIN.
 
On January 3, 2002 I had a PSA level of 4.6 indicating my prostate was in trouble. I went to a Urologist, he took a biopsy, I had a pre-cancerous prostate ( which means I did not have cancer, however 70 % of high grade PIN patients go to full blown prostate cancer within a year). I had all the ingredients that were suppose to lead to prostate cancer ( abnormal cells galore). The doctor said "only" that we will have to watch it. I didn’t like the answer so I said I will do more than watch, I will fix it. I went on the on the Internet and researched the "alternative health solutions"  to fixing the problem. I did so and applied the information. I had a biopsy in mid August of 2007; the biopsy showed no traces what so ever of the pre- cancerous cells! The Urologists believed I had changed the structure of my bad pre-cancerous cells back to normal.
 
Here is what I did. First let me speak briefly about curcumin.It is the new "alternative health hope" for MM. My wife passed away from MM 10 years ago. I started taking it several months ago. Two things became apparent to me recently. My C reactive protein count ( CRP) is .2 as of a reading I obtained  last week ( after taking curcumin) and my Triglycerides were 71, over a (30) point drop from my last reading. Why is that important? Inflammation seems to be a big factor in cancer and therefore MM as well. I am not a doctor and cannot speak in technical terms nor provide scientific evidence of results occurring in my body. I can only speak  anecdotally. I took the CRP test to determine  my risk for heart attacks; I learned below 1 is low risk; between 1-3 is a moderate risk; between 3-10 is high risk. I was reading a blog about MM and a man was suggesting CRP is very relevant to cancer and MM. So my CRP reading was VERY GOOD to say the least. However there is more to my story and other factors that might have made my CRP go down as well.
 
Briefly, my program to get rid of my pre-cancerous prostate was/is the following: I lost 25 lbs and maintained the weight loss. I went to a diet of ALL organic foods, no read meat (chicken and fish instead), stopped drinking and smoking, walked every day, bought a vita mix and juiced up to 50 ounces plus every day, with few exceptions, of "vegetables only." I occasionally had fruit but in much lower amounts due to the sugar content. I ate two table spoonfuls of "ground flaxseed". I had a table spoonful of cod liver oiI, had 3 oz. of Noni juice, 1000 grams of vitamin C; Saw Pallmento, selenium, Zinc, 600 mg of NAC (N acycetal cysteine),  tomato soup daily, bought a purifier for my faucet,  WAS EXTREMELY DISCIPLINED and did not deviate. Why? I was scared I was going to die.
 
I used broccoli, kale, parsley,carrots,  and cabbage (red) mixed with water. My taking curcumin (mixed with heated olive oil) must be taken in context with the above information.
 
Anyone reading this might correctly conclude this guy is a bit over the edge; I can understand that conclusion. However, I made a choice to live and go through some sacrifices for awhile……..it worked. My life style change caused all kinds of other good things to happen to my body…….need less to say, I really feel good. It was a wake up call for me. I hope this information can help someone……I know the fear of cancer. What I learned through my experience gave "me control"……I could actually do something about my body to make it better. When the doctor said we should "watch the high grade PIN" ……..initially I felt hopeless. Then I took control; unfortunately or fortunately, you have to do "it" yourself………place it in your mind and do it.
 
I truly hope this information will help others. Always believe you can do it……..if you think you can , you can….if you think you can’t , you can’t.

IMF Says 90% overall response with new Relvlimd® combination (BiRD)

This is a press release  from the  International Myeloma Foundation.

I was on Revlimid with high dose dex for some time back in 2005, I think. I remember being miserable on the high doses of steroids and that my MM progressed after I cut back.  We figured the Revlimid didn’t work for me. But that doesn’t mean that it might not work if I added Biaxin.  It’s one more thing I can try when I have to start treatment again. The thought of having to take steroids again kind of causes a feeling of anxiety.

­–BiRD Study (Biaxin®-Revlimid-Dexamethasone) Provides Evidence of Deep Complete Response Rates In Newly Diagnosed Multiple Myeloma–

North Hollywood, CA, January 4, 2008 - The International Myeloma Foundation (IMF)—supporting research and providing education, advocacy and support for myeloma patients, families, researchers and physicians—today said updated data from the Phase II BiRD study provide a new option for newly diagnosed patients with multiple myeloma whether or not they proceed to stem cell transplant. The findings show a superb overall response rate of 90.3%. 38.9% of the patients achieved a complete response (using EBMT criteria) and 73.6% achieved a 90% or greater decrease in m-protein levels. Using the new International Myeloma Working Group Criteria—recently developed to better define the magnitude of a complete response by a panel of experts led by Brian G.M. Durie, M.D., chairman and co-founder of the IMF—30.6% of the patients achieved this new stringent complete response* (sCR). The findings have been published in the online version of the journal BLOOD.

The BiRD regimen is made up of REVLIMID® (lenalidomide) plus a low dose of the steroid dexamethasone, and adds Biaxin® (clarithromycin). The BiRD treatment did not impede stem cell transplantation, and demonstrated two-year event-free survival rate of 85.2% for patients who underwent stem cell transplant and 75.2% for those who continued on therapy without transplant. Median event-free survival time was not reached.

In addition to the response criteria, the findings from the BiRD study, like a previous study of REVLIMID with low-dose dexamethasone, show response deepening over time: the average time to partial response was just over six weeks, but average time to complete response was 22 weeks, and stringent complete response was reached at 38 weeks.
"This is an exciting time for the treatment of myeloma," said Susie Novis, president and co-founder of the IMF. "We now have multiple studies showing improved response and survival with various regimens including REVLIMID/dexamethasone in previously treated and newly diagnosed patients, DOXIL®/VELCADE® for previously-treated patients who want a steroid-free regimen, and thalidomide/melphalan/prednisone in older patients not eligible for transplant."

Myeloma, also called multiple myeloma, is a cancer of the bone marrow that affects production of red cells, white cells and stem cells. It affects an estimated 750,000 people worldwide, and in industrialized countries it is being diagnosed in growing numbers and in increasingly younger people.

The data were published in an article by lead author Ruben Niesvizky of the Multiple Myeloma Service, Division of Hematology and Medical Oncology, Weill-Cornell Medical College, New York Presbyterian Hospital-Cornell Medical Center.

* sCR requires complete absence of M-protein by immunofixation, normal free light chain ratio and a negative marrow biopsy by immunohistochemistry.

ABOUT THE INTERNATIONAL MYELOMA FOUNDATION
The International Myeloma Foundation is the oldest and largest myeloma organization, reaching more than 165,000 members in 113 countries worldwide. A 501 (c) 3 non-profit organization dedicated to improving the quality of life of myeloma patients and their families, the IMF focuses in four key areas: research, education, support and advocacy. To date, the IMF has conducted more than 120 educational seminars worldwide, maintains a world-renowned hotline, and operates Bank on a Cure®, a unique gene bank to advance myeloma research. The IMF was rated as the number one resource for patients in an independent survey by the Target Research Group. The IMF can be reached at (800) 452-CURE, or out of the United States at (818) 487-7455. More information is available at www.myeloma.org.

Media Contact: Stephen Gendel or Jennifer Anderson (212) 918-4650

Dr. Durie talks about the possible causes of myeloma

Dr. Durie talks about the possible causes for myeloma.  Here’s an earlier link to another NBC video I posted.  These open in new windows. Click on the picture to see the video.

New findings in myeloma research

Sad News

I got some sad news today.  My e-mail friend and frequent commenter on this blog, Judith Meuli (Jude), passed away yesterday. Like me she had IgA MM, although hers was kappa light chain. We shared stories about living with MM and other things. She had let me know that her doctor had told her this would be her last year. I plan on making a donation to the IMF and the IMBCR in her memory. Jude was mom’s age.

Dr. Durie Appears on the NBC Nightly News (but neither of them is him)

Fighting multiple myeloma - Click on this link or the picture to see the video.

Special Edition: Multiple Myeloma Series Upcoming Webcast

Special Edition:  Multiple Myeloma Series
Upcoming Webcast:
This year’s American Society of Hematology meeting in Atlanta has brought many exciting new developments.  Join us this Friday for our discussion with two experts, Dr. Brian Durie, Founder, a Myeloma Specialist and Chairman of the Board for the International Myeloma Foundation and Dr. James Berenson, Founder, President & Chief Executive Officer of the Institute for Myeloma and Bone Cancer Research.  You’ll hear the latest groundbreaking news from the meeting and what these two renowned experts are excited about in Myeloma treatment and research.

“The Latest Myeloma News from the American Society of Hematology Meeting”
Friday, December 14, 2007, 2:00 pm Eastern (11:00 am Pacific)
Sponsored through an educational grant from Millennium Pharmaceuticals, Inc.
For a schedule of upcoming webcasts, to listen to recent myeloma program replays, and for further information, visit http://www.patientpower.info/specialeditionlymphoma.asp.

Featured Guests:

Brian G.M. Durie, M.D. is Chairman of the Board of the International Myeloma Foundation and a myeloma specialist at Cedars-Sinai Comprehensive Cancer Center in Los Angeles. He is also a member of the IMF Scientific Advisory Board. Dr. Durie is the recipient of the Leukemia Society of America Scholar award and the U.S. Hematologic Research Foundation Annual Award, among many others.

James Berenson, M.D. is the Founder, President and CEO of the non-profit Institute for Myeloma and Bone Cancer Research (www.imbcr.org) and Berenson Oncology (www.berensononcology.com) in Los Angeles, California. A leading physician-scientist, Dr. Berenson has specialized in cutting-edge research related to myeloma and metastatic bone disease both in the lab and with patients for 20+ years. He has been involved in many of the major breakthroughs that have brought new treatments for patients with these diseases resulting in both an improvement in the length and quality of their lives. His latest initiative, “The Cure Myeloma Project” enlists the work of a full-time research staff engaging in rigorous pre-clinical and clinical trials, using human myeloma cells.

Andrew Schorr: Host and eleven-year CLL survivor

HOW TO PARTICIPATE:
Listen live at http://www.patientpower.info/specialeditionmyeloma.asp
Call in live 877-711-5611 or Email questions to andrew@patientpower.info  
ABOUT PATIENT POWER:
Patient Power is a weekly show hosted by Andrew Schorr, ten-year leukemia survivor, patient educator and patient advocate.  The show features renowned medical experts on topics that include cancer, pain, diabetes, and heart specialists, as well as experts in clinical trials and top pharmacists.  The show serves to bring patients together in a radio and Internet community to provide information about available treatment options.  Patient Power takes questions from callers and Internet listeners on topics such as how to find the right doctor, how to advocate for effectively, when to get a second opinion from a specialist and how to evaluate one treatment option over another.

Dr. Durie Scheduled to Appear On The NBC Nightly News Tonight

This is the NBC Nightly news with Brian Williams.  Scheduling is always subject to what happens today that could prove more neweworthy but we’ve
been told that his segment will air tonight.  Dr. Durie is the chairman of the International Myeloma Foundatoin and a leader in the myeloma scientific and clinical community for over 30 years.

“Six Months” features MM Patient

I just ran across a program on the Biography Channel called "Six Months."

The program is about people living with deadly diseases, one being multiple myeloma. If you’re on the US west coast or central or mountain time, you can still catch tonight’s showing.

There are two more upcoming showings:

Thursday, December 6 3:00am
Saturday, December 15 1:00pm

From the Biography Channel web site:
Six Months: This emotional and heart-wrenching special features the stories of real people who are making the journey through the final months of their lives. After Eric and Janice both receive a terminal diagnosis, they quickly begin to see things from a unique perspective, and they challenge others to examine their own lives for the things that are truly important.

Janice has MM. Eric has a form of sarcoma.

I hope you can see this program. I haven’t found that it’s available on DVD, but if I do, I’ll post details.

This is Janice Chaffee’s web site: http://www.janicechaffee.com/.   MM took her life in early 2007. You may remember seeing the notice if you subscribe to Google Alerts.

Be prepared to cry.

Take care, everyone.
Beth

This is a Neostar Triple Lumen Catheter

This is the Neostar triple lumen catheter I had at Wake Forest last year.  It was noticeably heavier than the hickman double lumen. I had this thing in a plastic bag for almost a year. It had never been taken out and cleaned since it was removed, so you can imagine how gunky it was.  I tried to flush it with bleach and water, which wouldn’t go through due to a clog.

The Hickman (Bard) catheter I had at Duke during the summer can be found here.

I think it’s time for a new blog theme.  I’ll be on the lookout.  Expect a change soon!

Some lab values

I got the results of the tests done Monday at Duke. The full report was faxed to my office, and I haven’t seen it yet, but here’s what I have so far.

M-Spikes (I have two m-spikes)

Last month: 0.19 and 0.12 g/dL (Total is 0.31 g/dL)
This month: 0.16 and 0.22 g/dL (Total is 0.38 g/dL)

Immunoglobulin Profile

Last month: IgA 374 mg/dL Reference: 46-287
This month: IgA 465 mg/dL Reference: 46-287 (up 91)
Last month: IgG 709 mg/dL Reference: 588-1573
This month: IgG 603 mg/dL Reference: 588-1573 (down 106)

I have July and August here. Needless to say, I was fervently hoping for a drop in the IgA and an increase in the IgG.  The one good thing is that the IgG is still in the normal range, where it has never been since I learned I had MM.  It was usually below 300 mg/dL.

Can someone give me a good explanation about why I have two m-spikes? I’ve asked doctors about a zillion times, and I have either forgotten what they told me or didn’t understand it well enough to even remember.