Blog Archives

My Multiple Myeloma Celebration - Ding Dong the Witch is Still Dead!

2/23/2015

DING DONG THE WITCH (MYELOMA) IS STILL DEAD!

Every year I go to UAMS MIRT in Little Rock for annual testing. I have now been in CR or complete response for 9 years, but each year my wife notices certain signs that start to appear about a month before I go. It is a mind game that I have every year, and can only imagine how each of us with myeloma has similar thoughts. Will it come back, will I have more lesions, will my MRD be negative, will it morph in MDS(Myelodysplastic syndrome), will my kidneys fail again, and on and on and on. The result is that I become irritable, anxious, restless, and all the aches and pains of age become questions. I also DREAD the trip each year. The people at UAMS MIRT are great, but I would just about like to be anywhere else. And it is not the thought of the bone marrow biopsy, or the fact the MRI irritates my shoulder bursitis and hip arthritis to the point I have had to bale out of the MRI twice. Pain so bad that I want to gnaw my arm off. I have learned to take pain meds before I get into an MRI. This angst must be the fear of the unknown. Last year I had my first MRD (minimum residual disease) test, and it showed no myeloma cells in over 2.5 million cells tested. This turned my frown upside down. And thank God my MRD test was negative again. Ding Dong the Myeloma is still dead!!

I have said Dr. Barlogie is the Wizard of Ark, and over the years he has proven the " hit it hard up front" approach of Total Therapy works for the majority of low risk (85%) patients. I asked him if MRD would be a corner stone to the treatment of myeloma, and he said that it would be important but he had seen CR and MRD negative disease which still showed active lesions in the bone marrow. His point was it would be the combination of clear and clean imaging with MRD negativity which would be an important element of treatment.

Dr. Barlogie gave me his most recent publication which was titled, "Curing myeloma at last: defining criteria and providing the evidence." It is an exceptionally well written article which was published in Blood and is 26 pages long, and if you want to do some midnight reading CLICK HERE. The net of this is the average survival at 10 years is 60% for the most recent Total Therapy trial TT3a, and an estimate for average life expectancy will likely be close to 14 years, or over 3 times the average reported by the National Cancer Institute. In addition, they believe 50% of low risk patients will be CURED.

I have questioned why Total Therapy is not a standard treatment in the USA, and I have been told by many it is aggressive and more importantly it has never been compared to other treatments of myeloma in a blind clinical trial. UAMS has stated it was a moral dilemma to put people in the non Total Therapy side of the trial and that is why they have not conducted such a trial. However, if there were a trial of 400 people, 200 would be in the non TT side of the trial, whereas the benefit might apply to the 25,000 newly diagnosed each year. In addition, the non TT side of the trial could opt out at any time and go into the TT leg if MRD and imaging proves the non TT leg to be inferior. This I believe is a clinical trial that is already 12 years late.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Early Diagnosis and Treatment of Cancer Improves Survival Rates - Why Not Multiple Myeloma?

2/17/2015

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Dr. Irene Ghobrial of the Dana Farber Cancer Institute was on the Feb 12th Cure Panel and her broadcast was exceptional, however I want to talk of one MAJOR takeaway I had from the program. If you missed it you can hear a rebroadcast if you CLICK HERE. Her point was simple, straight forward, logical, and impossible to argue against that Multiple Myeloma is the only cancer where we wait for it to metastasize and show organ, bone damage, or anemia before we begin treatment.

She provides examples of successes in breast cancer and colon cancer where we do massive screening and when we find the cancer, it is treated. DCIS or ductal carcinoma in situ is the most common form of breast cancer, and if found during a yearly mammogram the growth will be removed with a 100% 5 year survival rate; however if it is caught after metastasis or Stage 4 the 5 year survival is just 22%. For Smoldering Myeloma, which is an early diagnosis for myeloma, the Entire Myeloma Specialist community used the philosophy of "Watch and Wait". Dr. Ghobrial says many of her patients call this "Watch and Worry!", and as a result Dr. Ghobrial is on a mission to bring the same success to myeloma that we find in breast and colon cancer.

She and many other specialists are coming to the conclusion that screening, early diagnosis, and early treatment is the future of myeloma treatment. There are a number of steps that must be taken to reach this goal. Those steps are as follows:

Step 1 - We need to determine which MGUS and smoldering patients will progress to active myeloma and are candidates for early treatment. Genetic testing may be the key to this step. For example just 10% of smoldering patients will progress to full blown myeloma, whereas 50% of high risk smoldering patients will progress. In MGUS only 1% of patients will progress, but some may have a genetic profile which indicates a higher likelihood of progression.

Step 2 - We need to prove early treatment will result in improved Overall Survival. A trial by Dr. San Miguel of the Spanish group conducted a trial for high risk smoldering myeloma and he stated the results were as follows,

Dr. San Miguel was the senior investigator on a phase III trial in which patients were randomized to receive lenalidomide and dexamethasone or observation, the latter being the usual standard of care for individuals who have an increase of plasma cells in the bone marrow that produce the monoclonal immunoglobulin (IgG), but do not have any myeloma symptoms.

San Miguel outlined the prognostic factors that allowed the research team to segment out the high-risk group, which included plasma cell bone marrow infiltration, IgG levels, and urinary protein levels.

“You want to give the patient what is needed, and nothing more than is needed,” San Miguel said.

This approach produced improved 3-year survival rates among the high-risk patients identified and treated by the Spanish team during the study; 94% of those who were treated were still alive at 5 years, compared with 80% in the untreated group - See more at: http://www.onclive.com/conference-coverage/ASH-2014/Multiple-Myeloma-Advances-Noted-Hematologist-Envisions-Big-Changes-in-Treatment-Paradigms#sthash.uYifhyum.dpuf

You have a 6% chance of dying in 5 years if you are treated, and a 20% chance of dying in 5 years if you are not treated during the smoldering phase of the disease. You are therefore more than 3 times more likely to die if not treated. Average life expectancy for a patient with symptomatic high risk disease is just 2 years. More trials are in the works, however this is some very compelling evidence for early treatment.

Step 3 - We have simple blood tests for the measurement of M protein and a more sophisticated test called the light chain test. Both of these tests together cost less than a mammogram or colonoscopy. However, these tests are not conducted during a normal physical and blood panel. Dana Farber will be establishing a clinical trial to conduct screening on a large scale to determine if screening, genetic testing, and early treatment can be a game changer like it has with breast and colon cancer. With talent like Dr. Ghobrial on Dana Farber's team, I feel it is not a question of if, but a question of when.

In my opinion Dr. Ghobrial is a SUPERSCIENTIST, and a summary of her background is as noted below.

DR. GHOBRIAL SUPERSCIENTIST

Dr. Ghobrial is an Associate Professor of Medicine at Dana-Farber Cancer Institute at the Harvard Medical School in Boston, Massachusetts. She is a physician Scientist who specializes in the field of Multiple Myeloma and Waldenstrom Macroglobulinemia specifically in the precursor conditions of MGUS and Smoldering Myeloma. Dr. Ghobrial received her MD in 1995 from Cairo University School of Medicine, Egypt. She completed her Internal Medicine training at Wayne State University, Mich., and her Hematology/Oncology subspecialty training at Mayo Clinic College of Medicine, Minn. She is on many Dana-Farber and ASH committees.

She reviews abstracts for the American Association of Cancer Research and top publications such as Blood, Lancet, and the Journal of Clinical Oncology just to name a few. She’s on the editorial board of the American Journal of Blood Research. Dr. Ghobrial reviews grants for the NIH, the Leukemia & Lymphoma Society and the MMRF and has won numerous awards including a Dana-Farber Clinical Investigator Award, the Robert Kyle Award for her work in Waldenstrom and more. She particularly focuses on the role of the malignant bone marrow niche in disease progression from early precursor conditions like MGUS/smoldering myeloma to active myeloma.

Dr. Ghobrial and her lab examines how myeloma uses a process of cell dissemination to determine biological changes that occure during progression in myeloma. She seeks to understand that progression process from inactive to an active state. In addition, her laboratory research data has been rapidly translated to innovative investigator-initiated clinical trials. This lab has conducted over ten phase I and II clinical trials. Their studies on myeloma cell trafficking have been translated to the first chemosensitization trials in patients with Myeloma.

In addition, she is the co-leader of the first consortium of clinical trials for blood cancers in collaboration with the Leukemia & Lymphoma Society to form the Blood Cancer Research Partnership, a consortium of 11 community oncology sites coordinated by Dana-Farber. She has initiated a new clinic for the Prevention of Progression in Blood Cancers where patients with precursor conditions such as MGUS, early MDS and early CLL will be monitored before disease progression to see how the clonal evolution happens during disease progression. She just joined the MCRI as a member of the Scientific Advisory Board. Sounds like she is a SUPERSCIENTIST.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Multiple Myeloma Support Groups Raise Awareness and Raise Funds For The Cure

2/13/2015

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The North Florida Multiple Myeloma Support Group had planned on doing a Mambo For Myeloma You Tube video, and our support group leader Anne found out that Takeda(the makers of Velcade) would contribute to the IMF research fund for each support group who put a Mambo video on You Tube. The North Florida group took that to heart and put together the following video, and challenged the other support groups to Mambo and contribute to the cure as well.

North Florida Myeloma Support Group Mambos to "Back in Stringent CR".

Funding for myeloma is one half of the average of funding of all cancers per life lost, and funding for all cancers continues to fall based on funding cuts to the National Institute of Health. Funding keeps falling for myeloma research each year, and it can only be made up through the efforts like this and all other myeloma fund raising initiatives. Mambo for Myeloma is one of the few which is supported by the IMF, MMRF, MMORE, and MCRI. These are all national myeloma organizations which are key to education, research, treatment, and assistance to the myeloma patient community.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

Lyrics to "Back in Stringent CR"

I have Myeloma what can that be?
Couldn't sleep at all last night
Wondering what the future held for me
It gave this man a terrible fright

I want to be in stringent CR
and you don't know how lucky you are, boy
to be in stringent CR

Been in the hospital so long I know the place
Gee, it would be great to be back home
Melphalan, Dex, it seems like a never ending race
With myeloma I feel so all alone

I want to be in stringent CR
and you don't know how lucky you are, boy
to be in stringent CR

Stem Cell Transplant really knocked me out
It leaves my senses behind
But when I hit sCR
And cure is on my mind
Oh come on

I want to be in stringent CR
and you don't know how lucky you are, boy
to be in stringent CR

Stem Cell Transplant really knocked me out
It leaves my senses behind
But when I hit sCR
And cure is on my mind

So raise awareness and fund research find a cure
So raise awareness and fund research find a cure

I want to be in stringent CR
and you don't know how lucky you are, boy
if you can just get into stringent CR

Oh just Mambo, Mambo, Mambo for Myeloma,

Doooo, Woooo, Ohhhh

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If We Nip It In The Bud Is This The Future Of Cure and Improved Survival Rates for Myeloma ? Do Not Miss The Cure Panel Featuring Dr. Ghobrial

2/10/2015

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Now that the program has aired you can listen to a rebroadcast of this CAN NOT MISS CURE PANEL featuring Dr. Ghobrial of the Dana Farber Cancer Institute. She discussed the subject of Early Treatment of Myeloma in a patient friendly manner at the February 12th Myeloma Cure Panel. You can listen to a rebroadcast of the program if you CLICK HERE.

I had the opportunity to be at ASH (American Society of Hematology) in San Francisco and went to one of the more research oriented presentations which was moderated by Dr. Gareth Morgan and featured a presentation by Dr. Irene Ghobrial of the Dana Farber Cancer Center. Dr. Ghobrial discussed the effect the bone marrow micro-environment has on the progression of multiple myeloma, and ways to make this micro-environment inhospitable to tumor growth. Her research has shown this micro-evironment has been modified in mice with exceptional results. Translated to success in human trials, this could be a the potential CURE. To view a link to the abstract CLICK HERE. Just be aware that this link may make your eyes glaze over. Dr. Ghobrial will be dscussing this in a patient friendly manner at the February 12th Myeloma Cure Panel which will broadcast at 6:00pm EST. The broadcast is titled Early Treatment of Myeloma with Dr. Irene Ghobrial, and you can get the details on how to listen live or enter your questions for the doctor is you CLICK HERE. If you want to call in to listen you can call in a few minutes prior to the broadcast at the number (718) 664-6574 or listen on line by CLICKING HERE.

For me this was one of the most exciting revelations from the ASH meeting. Most other presentations talked about new drugs used at relapse which may give you one or two years of added life, but this was different, this was the possibility of cure for all high risk MGUS and Smoldering patients. With the potential to prevent relapse after initial therapy or after relapse. This I believe it is the future of myeloma treatment and cure, and to say this was a can't miss panel would be a huge understatement.

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Myeloma PhotoShop Collage

2/7/2015

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Dana Holmes asked me to provide a collage of the photo shop work that has been presented on this site. Dana has been instrumental in raising awareness for multiple myleloma, and has started the Mambo for Myeloma awareness and fundraising initiative. My Son-in-Law Sean Murphy has provided all of this Photoshop work, and I can not tell you how much I appreciate his efforts. My daughter Dana made an excellent choice, and his efforts in helping me to provide a little humor to my myeloma message is outstanding and greatly appreciated. I hope that you enjoy this collage. You can see the articles associated with these images by paging though the blog posts at http://www.myelomasurvival.com/myeloma-blog.html or CLICK HERE.