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.

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.

Ancient history

My dad sent one of my high school yearbooks to me. He found it while he was cleaning out some things. I have always hated having my picture taken. This is from 32 years ago, so why not put it on my blog? This was taken without my knowledge, and I never knew who did it. I was running with a teacher’s dog in this photo. I had one of my dad’s army shirts on.  I loved that shirt and wore it until it was threadbare. Oh yeah — for the kids — this was back when the pictures in our yearbooks were all black & white and Gerald Ford was president.

Yearbook photo

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

Cold weather is upon us

It’s been colder here lately.  This week, anyway.  Last week we had temperatures in the 80s!

The county is putting in water for us, and they’ve made quite a mess of the street. The upside is that we’ll have better water pressure and fire hydrants! I think it was as much as 8 years ago that they started making plans to do this. I’m relieved that it’s finally happening.  We won’t have to carry water up from the creek anymore. No, we don’t do that!  We have wells. The pumps are powered by electricity, even.

This site has some info about where I live.

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.

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.

“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