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My Myeloma Friends I'M FREE!

8/22/2015

Yesterday was a big day for me. I had a port installed in my chest when I was first diagnosed in 2006. I have had two Stem Cell Transplants, 9 major hits with chemo, and over five years of VTd maintenance. In February, I was MRD negative for the second year in a row, and I finally feel I can put the last physical reminder of my myeloma in the past. My chemo port must go. To quote the members of the rock group The Who, "I'M FREE!".

I have had my chemo port in for a little over 9 and 1/2 years, and my doctor said he had never had a patient with a port in that long. Just for your information, removal is accomplished with just a local anesthetic. For me it did not hurt too much, however he mentioned mine was the hardest of any he had ever removed, and it took a long time to get it removed. I took a page out of Pat Killingsworth's playbook and took a few selfies. I think Dr. B did a great job, and I thank him for the care he took in removing it with the least amount of pain. He mentioned that most ports have a coating on them which prevents your flesh from attaching to the port material. Mine was in for such a long time this material was no longer present and was the cause for the difficult removal.

Dr. B mentioned that I got a lot of good use out of it, because it appeared to be heavily accessed. Well now finally, I'M FREE.

Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.com

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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God Helps Those Who Help Themselves! Can Myeloma Patients Help Themselves?

8/19/2015

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Some patients may not agree with this, but if nothing changes, nothing will change. The consensus opinion of myeloma specialists, which is confirmed by data from the NCI (National Cancer Institute), is that 85 to 90% of myeloma patients will not be cured and will one day become high risk and become non treatable. It is just a matter of time! In addition it takes 2 to 4 billion dollars to develop a new drug and the NCI (National Cancer Institute) has yearly research funding for myeloma of $45 million, so any myeloma drug development is dependent on drug company funding. Drug companies put their money where they will be most profitable, and as a result myeloma gets little attention and funding, and the efforts of drug companies go toward the common cancers, cancer of the breast, lung, and prostate. What do we do to focus on myeloma, an orphan cancer? I think the MMRF (Multiple Myeloma Research Foundation) has done a great job in focusing limited funds on some of the best potential drugs. However sometimes the best possibilities for cure are not drugs but the patient's own immune system, and these excellent treatment options are not a pill which can excite a drug company for investment. This is what we found with the new MCRI (Myeloma Crowd Research Initiative).

The MCRI asked the world of myeloma researchers to enter their best ideas for a cure for high risk disease, and these were then ranked by some of the top myeloma specialists and researchers in the world. Doctors from MD Anderson, Mayo Clinic, Dana Farber, Memorial Sloan Kettering Cancer Center, to name a few of the best cancer research centers in the world. The top two proposals were immune therapy approaches, or those where a patient's own immune system is energized to fight the disease no matter if it is high or low risk. To say this is exciting is such an understatement, however to see the light of day they need your support. You can help yourself if you support one the following superior possibilities for CURE. A recent press release by the MCRI can be viewed if you CLICK HERE.

CAR T Cells Targeting CS1 and BCMA by Dr. Hermann Einsele, MD and Dr. Michael Hudecek, MD of the University of Würzburg, Germany
CAR T Cells are an intensely exciting area of research, showing a more than 90% response rates when used with patients who have failed standard therapies in leukemia.

According to Dr. Michael Sadelain of the Memorial Sloan Kettering Cancer Center and co-founder of Juno Therapeutics, “CAR T therapy is at the same time cell therapy, gene therapy, and immunotherapy. It represents a radical departure from all forms of medicine in existence until now.”

The same exciting potential is now coming to multiple myeloma. Today, CAR T Cell therapy seems to be a hot topic,an overnight success, but it has been many years in the making. Doctors Einsele and Hudecek have been deeply involved in CAR T cell and immunotherapy work for many years. For their study, a patient’s T Cells are removed from a blood sample and are then engineered with a specific CAR T cell receptor. After a two week period to allow the cells to expand and grow, they are given back to the patient via injection. The engineered (CAR) T cell can now seek and destroy the myeloma cells. The selection of the right target is critical. The doctors want targets found only on myeloma cells and not on normal cells and have selected CS1 and BCMA. They note that CS1 is found on all myeloma cells, while BCMA has slightly lower occurrence, but chose to use two targets instead of one for greater impact. They have found that after treatment, a small percentage of patients have cells that are smart enough to hide the target marker, called “immune escape”. By using two targets, they have a better chance of finding and killing all of the myeloma cells.

CAR T Cells can give unwanted side effects in a small number of patients because they are so powerful and take effect so quickly, sometimes creating a cytokine-release syndrome (CRS) when the myeloma cells die. If any patients exhibit severe side effects, they can administer an antibody as an emergency brake, which immediately stops the effect in patients. For this study, the therapy is a single treatment and is not used with transplant or other combination therapies. It is now in pre-clinical work before it can be used in a Phase I clinical study. This study will be applicable for high-risk patients who have failed standard myeloma therapies but will also be appropriate for normal risk patients regardless of genetic features.

To learn more about this important project, read or listen to the Myeloma Crowd Radio Interview with Doctors Einsele and Hudecek.

Immunotherapy using MILs and autologous transplant by Dr. Ivan Borrello, MD, PhD of the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center Dr. Borello is working to create a patient-specific immunotherapy using enhanced T cells from the patient’s own bone marrow, for truly personalized medicine. He has found the marrow infiltrating lymphocytes (MILs) inside of the bone marrow to be more indicative of a patient’s disease rather than taking a blood sample. “Several years ago we did experiments where we took blood and bone marrow from patients and we activated these cells with beads in the laboratory and showed that upon activation there was no increase in tumor specificity or tumor recognition of the cells that were derived from the blood whereas, in contrast, the bone marrow cells or the MILs from the patients had roughly a 100-fold increase in tumor specificity,” says Dr. Borrello.

The higher the specificity, the higher the chance a patient has of going into remission. After he extracts T cells from the bone marrow in an individual patient (similar to a bone marrow biopsy), he expands them a hundredfold outside of the body in the presence of the tumor cells, which help them recognize which targets to hit when given back. Three to four days after autologous transplant, he gives them back to the patient. When they are re-introduced, they target the hundreds of proteins that could be causing tumor growth for that patient, not just a single protein. This is an open clinical trial today for patients with high-risk genetic features. Compared to CAR T Cells, this approach targets hundreds of proteins versus one or two and limits the “immune escape” that can occur in the CAR T cell approach.

By targeting the specific disease-causing proteins in each patient, Dr. Borrello hopes “that the likelihood of such antigen escape variance are potentially significantly less.” The treatment is used in conjunction with autologous transplant to take advantage of the time where the transplant takes a patient’s lymphocyte count down to zero. The body automatically tries to repopulate these counts, giving the new, enhanced T cells a chance to expand twice– once in the lab and then again as part of the natural growth that occurs after stem cell transplant.

In the future, the treatment may be successful with high-dose chemo but not as high as transplant requires. The side effects of the treatment have been minimal, especially compared to the CAR T Cell potential effects. This third clinical study is now open for high-risk genetic feature patients who have not yet had stem cell transplant, but they can have had other prior therapies. The study uses lenalidomide as follow-up treatment because it has anti-myeloma properties as well as immune system boosting properties.

To learn more about this important project, read or listen to the Myeloma Crowd Radio Interview with Dr. Borrello.

Now it is your turn to help yourself. You can start a fund raising page or contribute to mine and I will split the funds equally between these two excellent proposals. Please find out how to set up your own fundraising page if you CLICK HERE. To contribute to my fund raising page CLICK HERE. My goal is to raise $20,000, and I commit to contribute $20 for every $1000 my team collects till we meet our goal, and if we meet our goal I will SKY DIVE FOR MYELOMA!

Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.com

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Can Myeloma Patients Save Themselves? Could Social Media Help?

8/13/2015

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For years many myeloma specialists concluded multiple myeloma was incurable. But now many specialists believe 10 to 15% of patients have been cured, and those not cured will live for 8 years or more if they do not have high risk disease. For the 15% who are high risk at diagnosis and the 70 to 75 percent of low risk patients whose myeloma will eventually morph into high risk disease, this is just NOT GOOD ENOUGH. So the key to LONG TERM survival is the cure of high risk myeloma.

How can we make advancements in high risk disease when funding for myeloma research is less than half of that for all other cancers and just 20% of that for melanoma ( often confused for myeloma)? The MMRF does a great job of trying to obtain funding from those philanthropists who have been so generous with their giving. But even with this effort we are still far short of the average funding. I like to think that if we expect something to change, something must change. The corollary to this is, "The definition of insanity is doing the same thing over and over again and expecting different results." So WHAT CAN WE DO? The we being the myeloma patient community and our army of caregivers, friends, and family. There is a new initiative called the Myeloma Crowd Research Initiative or MCRI. So what is this and why might this be different?

It is different in that it is a patient and myeloma specialist driven initiative with the belief that if mobilized, the myeloma patient community, with the most to gain or lose, can help fund the most promising high risk disease proposals for a cure. A recent blog post on the Myeloma Crowd web site provided the following project update.

The Myeloma Crowd Research Initiative (MCRI) is the first crowdsourced and patient-funded effort to find effective solutions for multiple myeloma patients with high-risk disease. As patients, we believe that we can make a difference in the pace of research and we are willing to pitch in and do whatever is required to do just that. Our goal is simple – help find and fund a cure for multiple myeloma.

The new arsenal for most myeloma patients is impressive, but for patients with high-risk genetic features or aggressive relapsed/refractory myeloma, the outcomes are still alarming. We asked researchers all over the world to submit their research proposals for high-risk myeloma, and we received 36 high-quality responses. From that list, we asked our Scientific Advisory Board to help narrow the list to 10. Those 10 were invited to participate on Myeloma Crowd Radio in order for patients to understand what the proposals aimed to accomplish. What we found was that most of the 10 research proposals were equally exciting for low or standard risk myeloma patients. Two of the proposals were able to receive funding through other sources, so 8 of the 10 submitted full proposals for review.

On August 15th, this Saturday, we will announce the proposals selected for the patient-driven funding initiative. We will be including these proposals on our MCRI fundraising page and we invite you to help make their research a reality by creating your personal fundraising page for this campaign. You can upload your own photo, change the text and send a link to your friends and family, asking them to support you by funding research that has been carefully selected by leading myeloma specialists and educated myeloma patients. The research from all of the proposals is impressive and selecting just a few from the list below is incredibly challenging. To view all of these exceptional proposals CLICK HERE.

A key component of this initiative is the use of crowd funding. Crowd funding is the use of the internet and social media to fund these exceptional projects, without which they will remain just great ideas with no funding to bring them to fruition. If you would like to know more about how social media can help to change the way we achieve new successes in myeloma research and treatments, Dr. Mike Thompson will provide an overview on Monday, August 17th at 12:00 noon EST. To get details on how to listen to this program CLICK HERE.

Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.com

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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My Myeloma Friends I'M FREE!

God Helps Those Who Help Themselves! Can Myeloma Patients Help Themselves?

Can Myeloma Patients Save Themselves? Could Social Media Help?

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