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Cancer Patients "Heal Thyself"

6/1/2015

2 Comments

 
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Multiple Myeloma is an insidious disease.  It is because, as renowned myeloma specialist Dr. Tricot so aptly explained, it is not a solid tumor which can be localized, cut out, or radiated.  It is in the bone marrow and flows in the blood and "it's everywhere, it's everywhere".  In addition, some 80 to 90% of patients will not be cured and will ultimately become high risk patients, and no one has been able to solve high risk multiple myeloma.  If you are diagnosed as high risk you will have a life expectancy of just two years, and if you are low risk and are not of the fortunate few who are cured, you also one day will be high risk and have just one or two years left to live. 

So does this mean most MM patients are doomed?  Yes if left to the existing drug development processes and procedures.  The most recent drug developments, as author and advocate Pat Killingsworth often says, will provide one to three more years of life, and the FDA and the health care industry considers this to be major achievements.  To a myeloma patient this is not "The Answer", our answer is CURE, and cure means overcoming and curing high risk disease. 

The MCRI (Myeloma Crowd Research Initiative) has decided to throw out the current drug development paradigm and decided to shoot for the high risk cure.  I have been part of the development process which had some real "AHA' moments.  A short explanation of this new initiative follows:

Some of these revelations include:

- We received 36 high quality proposals for clinical trials for high risk disease, and it was tough to cut them down to just 10.  What this means is there is not a process or adequate funding in the current system to focus on the end game of cure for high risk disease.  Which I believe is the cure for all myeloma.  This is just so sad. 

- Most of the 10 high quality proposals were either immune therapy, targeted therapy, or improving the patient's antibody response.  These are curative therapies, but are not the kind of therapy which result in a pill or infusion that a drug company would find to be a money maker.  This means that they would not see the light of day if not for university research funding or a new funding method such as Crowd Funding.  I would argue a great money maker is a drug that controls but does not cure myeloma, and one which has years and years of repeat customers.  Nothing worse for profits than a treatment which requires just one use and cures.  Drug companies currently spend billions to develop new drugs, so no profit means no spending.

-This process will only work if it is a grass roots process and is embraced by the patients, caregivers, families, and friends.
Those who really have skin in the game, a person's life in the balance.

- Because of the complexity of myeloma, it requires targeted therapy, and this approach can and will be transferable to other cancers.  Like David and Goliath, if you slay the most difficult and strongest cancer like myeloma, the rest will fall like dominoes.

I will be writing more about the MCRI initiative in the future, because I do believe if patients make an effort to support this program they will HEAL THYSELF!  And if it not successful we only have ourselves to blame.  And oh what a sad commentary that would be.  To learn more about MCRI CLICK HERE, and how you can be part of the solution and start or support a team CLICK HERE.

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

2 Comments
Mark
6/3/2015 12:01:21 am

Great video and great initiative. You should have had a mug of beer on the table to make it a more normal scene at the Peterson household!

Just a suggestion for the project coming from a formerly high risk patient that has been MRD negative with no maintenance therapy since my partially t cell depleted allo 4 years ago. If you can find a patient that would be willing to do Dr. Koehne's t cell depleted allo with WT1 when they get to first complete response, you should fund it. The reason is allo transplant in first complete response is a known cure for younger, high risk blood cancer patients. My donor tells me that it has been a life changing experience for her knowing that she helped cure a patient of blood cancer. Since the members of this initiative are doing such a great thing for the myeloma community you all deserve the knowledge of knowing you helped cure a patient as well. You would be likely to get more financial contributions when you show a success to fund other initiatives that would help relapsed, older patients.

The reality is that it is very difficult to cure a relapsed myeloma/blood cancer patient. If you just fund projects for relapsed patients it will be much more difficult to show an early success.

Reply
Gary Petersen link
6/3/2015 10:54:46 am

Mark, thank you for the great suggestion. The initiative does consider all high risk disease, and is not limited to relapsed refractory. We have 10 great proposals and much choose just two, so the patients and doctors on the advisory boards have some really tough choices to make. If we choose right we just may be able to cure all myeloma.

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    Gary R. Petersen
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    CLICK HERE for my myeloma journey

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