Blog Posts

Multiple Myeloma - ASH 2015 Part 1

12/6/2015

ASH 2015 – The Global Advances in Myeloma: Providing the Best Options for Treatment in 2015

I attended a symposium chaired by Dr. Brian Durie which centered on providing information on the best options for therapy in 2015. However, it was focused on debates around several questions. The panel was superior, with members being some of the very best myeloma specialists in the world. There was Dr. Jesus San-Miguel from Spain, Phillppe Moreau from France, Shaji Kumar from the United States, Antonio Palumbo from Italy, and Bruno Paiva from Spain. Dr. Durie started the forum by remarking what a wonderful preamble we had going into ASH with the approval of three new myeloma drugs in the last month. Two immunotherapy drugs of Daratumumab, Elotuzumab, and Ixazomid an oral protesone inhibitor.

The questions were as follow:

Will New Diagnostic Criteria and Early Treatment of MM Improve Survival or Result in a More Aggressive Disease at Relapse?

Dr. San-Miguel made the case for early treatment referencing a recently published high risk smoldering clinical trial which companied Rd vs watchful waiting which showed better PFS (progression free survival), and OS (overall survival). Dr. San-Miguel was also excited about a new clinical trial, KRd, transplant, and maintenance for high risk smoldering disease. Dr. Phillip Moreau was more cautious and believed we can not have a treatment based on one trial. Because 30% of high risk patients will not progress to active myeloma in two years so we might be over-treated these patients. To this layman, I think Dr. San-Miguel has got it pegged.

Should Risk-Adapted Therapy Be Used for Patients with Newly Diagnosed MM?

On this question Dr. Shaji Kumar took the pro side of the debate and mentioned the mSmart program. I noticed the mSmart program was recently updated and now recommends VRd for standard risk patients from the previous Rd regimen. Dr. Palumbo took the more aggressive approach and thought the best treatment should be used with all patients. Me being a Total Therapy patient which is a very aggressive approach and younger at diagnosis has a tendency to want to swing for the fences, but I do understand infirm and frail patients may go for less intense therapy.

Should Minimal Residual Disease Be Used to Guide Treatment?

Dr. Bruno Paiva believes MRD or Minimum Residual Disease is not ready for prime time. He believes NGS or Next Generation Sequencing will be a better more accurate testing method.. Dr. Antonio Palumbo believes even with NGS there will still be some myeloma left so continued maintenance is required. He noted 45% of patients who are MRD negative are not PET/CT negative or they have active lesions in their bone marrow. I remember once Dr. Barlogie had mentioned he noted this as well and believed a better measure of disease control would be the combination of MRD negative and PET/CT negative. On this one it looks like the jury is still out.

Emerging Systemic Therapies: Best in Patients With Newly Diagnosed MM or Those With Relapsed Disease?

This debate was not that clear to me. Dr. Shaji Kumar made the point that it depended on the circumstances, and Dr. Moreau believed they should never be used until they have been proven effective in a phase 3 trial.

I was wondering if some of the views were taken just for the argument sake, however I was still surprised at how well prepared and convincing each debater was. Also surprising was how much progress we have make in the last few years in the consolidations of the treatment continuum, yet there is still such diverse views.

Good luck and God Bless your Myeloma Journey/ [email protected]

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

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Funding For Research and Awareness Is Critical To Improved Myeloma Survival, And You Can Help At No Cost To You. Just #IMambo4Myeloma

12/1/2015

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Cancer in general is so grossly underfunded, and myeloma gets just 10% of the funding per life lost as compared to melanoma. Melanoma is the cancer often confused with myeloma.. One in 5 myeloma patients die within the first two months of diagnosis because of delayed diagnosis, due in large part by a lack of awareness by the public and the general practitioners and local oncologists. So the two most important unmet needs, in my mind, are funding for research and awareness of the general public, the general practitioners, and oncologists who are not myeloma specialists.

Recently, I have seen a shift in the specialist community to finding myeloma early and treating it before it causes organ damage, and drug companies partnering with the patient community to help fund research and increase awareness thru social media. It appears Big Bad Pharma is not so bad after all. Historically they have supported local IMF groups and some web sites, but this is the first time they have come out of the shadows to try to make an awareness DIFFERENCE . The first such effort was the MCRI, Myeloma Crowd Research Initiative where Takeda contributed $5 for every tweet to the tune of $50000 for research. But maybe a more important factor is that they helped to get the word out on social media, therefore possibly helping awareness to go above the dismal current 3%. Everyone has heard of lymphoma and leukemia, but few people ever hear about myeloma until they are diagnosed.

A new initiative funded by Sanofi will contribute $5 for each tweet which includes the hash tag #IMambo4Myeloma. So far $30,000 has been collected. If you go to twitter and search #IMambo4Myeloma you will find hundreds of posts which you can retweet and make hundreds and thousands for cancer research at no cost to you. Please participate, it might just save lives, maybe yours. Dana Holmes was the key to setting up this program with ASH and Sanofi, and has provided the following update on the program.

Dana Holmes "A shout out to the members of our group who continue to actively participate in the ‪#‎IMambo4Myeloma‬ awareness and $$ for the American Society of Hematologists...THANK YOU for stepping up...this alternative to fundraising for research/educational $$ from a major pharmaceutical company (SanofiUS) to help the myeloma community continues to be one of the easiest fundraisers to actively engage in..the myeloma researchers need funding to conduct their research, and it is getting more difficult for them to access funds...this may not amount to much in the big scheme, but it certainly adds to the pot ...It is easier to raise $1,000 from tweeting or sharing posts than it is to sometimes rally your personal network of family and friends to donate to a particular cause...it can at least augment your personal efforts to raise $$ for a particular organization or the overall good for the myeloma patient community, which we are all unwilling members of.

Many of you created a Twitter account or reactivated your account just to join in.

Again, thank YOU for stepping up. Because of YOUR continued efforts, we have already raised $31,000...and we still have 10 more days to do some additional good and just as important, to raise AWARENESS !!"

Dana has been tireless in getting the participation of her smoldering support group, and I am hoping this post will help to improve participation even more among the myeloma patient community.

Good luck and God Bless your Myeloma Journey/ [email protected]

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

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Myeloma Patients Can Be Thankful - Let Me Count The Ways

11/28/2015

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We are in the Holiday Season, and I believe the myeloma patient community has much to be thankful for. What can someone with cancer be thankful for?

1) Our dedicated myeloma researchers and specialists, whose selfless service to the myeloma patient community, is second to none. They are extremely active at major hematology forums like ASH and ASCO. Few incurable cancers have shown the rate of improvement of life expectancy as myeloma, from 9 months to now close to 5 years.

2) Our dedicated myeloma patient advocates have helped to bring myeloma out of the shadows through social media and on line websites and blogs. Some like Kathy Giusti and Jenny Ahlstrom have started the outstanding patient- centered MMRF and MCRI foundations. Others also have given so much to educate the myeloma patient community, a few of whom are Pat Killingsworth, Yelak Biru, Cindy Chemilewski, Jim Omel, Jack Aiello, and Dana Holmes.

3) Also Myeloma Patient Caregivers, who make the unbearable bearable. Some like Susie Novis have gone on to create the International Myeloma Foundation. Those who have lost their loved ones, but continue their service to the myeloma patient community like Ann Pacowta and Dianne Chiles of my North Florida Support group, Kimberly Alexander, and I am sure many more.

4) And the myeloma drug companies who first brought us the breakthrough drugs of Velcade and Revlimid, then Kyrolis and Pomalyst, and now Panobinostat, Daratumumab, Ixazomib, With each new drug, overall survival and progression- free survival continue to improve to the point where survival and life expectancy are getting ahead of the statistics.

5) Our doctors no longer say myeloma is a death sentence, but worse case say it is on the verge of being chronic but treatable, to others who are talking cure.

6) There has been a consolidation of the Myeloma treatment continuum to the point where most myeloma specialists believe in treatment, which includes induction, transplant (if eligible), consolidation, and maintenance. Treatment is becoming more of a science than an art. Specialist treatment opinions are becoming more congruent, making it far more understandable to the myeloma patient.

7) Patient Advocates and drug companies are partnering to provide improved awareness and help to fund research through programs like the Takeda support of the MCRI initiative, and the Sanofi supported #IMambo4Myeloma program to support ASH. With a history of only 3% of people even knowing what myeloma is, it is important to get the word out so people can be informed. Because with myeloma, knowledge is LIFE.

8) There is now a whole new world of treatment options under development using immunotherapy with CAR T cells and MILs, which holds the hope of a cure for high risk disease. And if successful on high risk, this will benefit all myeloma and with fewer and milder side effects.

Good luck and God Bless your Myeloma Journey/ [email protected]

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

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No Cost to You - Register Today for the MCRI 12-Day Challenge. Each Social Media Share Raises Money and Awareness for Myeloma Research. By Jenny Ahlstrom

10/21/2015

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Thank You, Thank You, Thank You. With the support of you the Myeloma Patient Commmuinty we raised $51,000 to fund research for OUR CURE.

We have been given a unique opportunity to get together as patients, family, friends and caregivers to raise research dollars and awareness for multiple myeloma through our social media actions.

The 12-Day MCRI Challenge will help each of us take specific actions that will directly impact our own outcome or the outcome of someone we love with multiple myeloma. Through a united team effort, the MCRI 12-Day Challenge will allows us to provide awareness, education, and important research dollars to accelerate a cure.

As the second phase of our Myeloma Crowd Research Initiative fundraising campaign, we’re announcing our inaugural “Can’t Wait for a Cure MCRI 12-Day Challenge,” a campaign that lets YOU take action to help myeloma patients. Takeda Oncology and Signal Genetics have agreed to pay $1 for every social media impression that is associated with one of our challenges. Our goal is to reach over 50,000 impressions in 12 days. We have a short window to take advantage of this opportunity and 100% of this money goes to sponsor the two MCRI myeloma research projects.

Here’s How it Works

1. Register

Starting today, you can register to join the Myeloma Crowd MCRI 12-Day Challenge. We are scheduled to start the challenges on Monday, October 26th. We’ll keep you up-to-date on the daily challenge, track your social media shares and tell you who won the prize of the day. Our goal is to have thousands of people taking action – patients, caregivers, siblings, grandkids, long-lost friends and anyone who knows and loves a myeloma patient!

CLICK HERE TO REGISTER

2. Do the Daily Challenge for 12 Days

Beginning on Monday, October 26th, we will post/email a daily challenge for 12 consecutive days. The challenges are simple: read an article and share it on social media, perform a simple act of service, or learn about a key topic that could change the course of a patient’s care. Do the challenge.

3. Share the Challenge on Social Media

After you’ve finished your daily challenge, please share the challenge link on your social media with the hashtags #discovermyeloma, #mmgenetics and #curemyeloma. Our goal is to get over 50,000 impressions by the end of the 12 days. Don’t worry – once you register we’ll send you a daily email with simple examples you can copy and paste into your social media to share once you’ve completed the challenge.

4. Help Earn Funds for Myeloma Research

Through Your Actions For each action you take, our generous sponsors, Takeda Oncology and Signal Genetics will donate $1 to the Myeloma Crowd Research Initiative. Your small and simple actions will not only educate, but will also bring tens of thousands of dollars to myeloma research!

Our host sponsor Takeda Oncology is donating tens of thousands of dollars to make these challenges meaningful for patients and research. They provide amazing support of myeloma awareness and are a world class supporter of patients and patient advocacy!

Signal Genetics is a participating sponsor and in addition to their donation amount has has granted a FREE MyPRS test ($2900 value) as one of the prizes. Fantastic!

Thanks also to iHeart Media/94.1 KODJ and Dr. Guido Tricot and Dr. Robert Orlowski for their generous donations of tickets and time for our prize locker.

5. Earn Prizes

For each challenge, we will randomly select one winner from the participants of that day’s challenge. You must be registered either through the registration button above or the Time Machine phone app to be included in the raffle for this daily prize. The winner will be announced on the day following the challenge. Additional prizes are also available with the use of the app described below.

If You’re Tech-Savvy
If you, your kids or grandkids are tech-savvy, you can download an app called Time Machine on your smartphone to help you track your activity. Don’t do any of the challenges just yet! We are going to start them together on October 26th maximum impact. Here’s how to use the app:

Download the Time Machine App on your phone
GET TIME MACHINE ON IOS
GET TIME MACHINE ON GOOGLE PLAY
Find our campaign called “Can’t Wait for a Cure, Myeloma Crowd”
Login with Facebook or Twitter. This is how you will share the actions on social media
Click on “Do This”
When we post the challenge, do it in the app. The app will walk you through the steps to share your action on social media.

REGISTER TODAY

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We Can't Wait For A Cure! If You Can't Give You Can Still Be A Myeloma Soldier!

10/13/2015

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In honor of all those who have lost their battle with myeloma.

I can not wait for a myeloma cure because we just lost a very special person in our IMF support group, and I just want this to STOP. We have a new initiative which is positioned to find a cure for high risk myeloma and I feel it is our best chance for a cure for all myeloma.

One of our biggest issues with achieving our fund raising goals is best described by a patient who I sent a letter introducing him to the Myeloma Crowd Research Initiative.

He writes, " Thank you for keeping me up to date with your emails and activities schedule. I pray for you all and for the great success of your movement to help find a cure for Multiple Myeloma.!

I wanted to bring to your attention that I am currently fighting Multiple Myeloma myself. I was diagnosed in December of 2011 with 12-fractured vertebrae and stage-3 Multiple Myeloma. I lost 4-inches of height, endured 32-sessions of Radiation treatments, went through 2-stem cell transplants and of course I am still taking the chemo cocktail and doing the Aredia infusions in hops of strengthening the bones in my back.!

Now, I am only telling you this to say that I am obviously sympathetic to your cause.! I wish that I could donate and show my financial support. I imagine you would agree, that our fight is not an inexpensive challenge.! I would gladly be a "foot-soldier" to ask others to donate but otherwise my pockets are as empty as my cupboards.

I wish you the greatest success.! We are warriors in the most dangerous of battles and it is critical that we soldier on.! I applaud and salute you.! Be Safe & Be Blessed,"

So if you can not give you can be a myeloma foot-soldier and start your own myeloma fund raising page if you CLICK HERE. However, if you can contribute, you can go to my fund raising page by CLICKING HERE.

Pat Killingsworth, author and patient advocate just wrote an exceptional article about this initiative and I highly recommend it and if you CLICK HERE you can read it. It will help to clarify how important this is to the myeloma patient community. We can do this, we just need myeloma soldiers to "soldier on".

Good luck and God Bless your Myeloma Journey/ [email protected]

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

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Multiple Myeloma Mystery - Where's Barlogie?

9/25/2015

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Where's Barlogie? It was May of 2015 when I first mentioned Dr. Bart Barlogie was to leave UAMS, and in July I was able to confirm from many sources Dr. Barlogie would be practicing at Mt. Sinai in New York in September. But then it was like he fell into a black hole, nothing to confirm the move from Mt. Sinai until yesterday. As Yogi Berra was known to say, "It ain't over till it's over!" So now it is official official, Dr. Bart Barlogie will be practicing as the Director of Research at Mt. Sinai in New York City. The press release stated the following:

(New York – September 23, 2015) – Bart Barlogie, MD, world-renowned myeloma expert who introduced the first curative therapy, a multi-drug regimen known as Total therapy 3, for multiple myeloma joins the faculty of Tisch Cancer Institute of the Icahn School of Medicine at Mount Sinai (ISMM), one of the elite cancer centers designated by the National Cancer Institute (NCI). Dr. Barlogie will serve as director of research in the Myeloma Program led by Sundar Jagannath, MD, Professor of Hematology and Medical Oncology at ISMM

.“We are extremely excited for Dr. Barlogie to join us as he brings a wealth of expertise and innovation in myeloma research,” said Steven Burakoff, MD, Lillian and Henry M. Stratton Professor of Cancer Medicine and Director of The Tisch Cancer Institute at Mount Sinai. “With him and Dr. Jagannath at the helm, Mount Sinai will have the country’s premier myeloma program.”

You can read the entire press release if you CLICK HERE. One of the biggest questions of patients including myself is as Director of Research, will he be seeing existing patients and will he take on new patients. In the press release this is not mentioned once. So to obtain clarity I reached out to Dr. Barlogie and asked him a series of questions. Those questions included the following.

-The press release did not say you would see old patients or can take on new patients. If you will be seeing patients, when does or did this start.

-How or who would an old or new patient contact to see you. Have you had a number of your old patients follow you to Mt. Sinai.

-As Director of Research will you be focusing on high risk myeloma only or tweaking the TT protocol, or looking for new immuno therapy for low and high risk?

-For me a big question will be cost of care, I will follow you if my new Medicare and BCBS D and F will cover most of the cost at Mt. Sinai, and how this compares to UAMS where I would opt to see Dr. van Rhee. I believe he still is in line with your thinking on treatment philosophy? Who would I talk to at Mt. Sinai to find this out what would be covered?

If you have corresponded with Dr. Barlogie you will find him to be direct and use as few words as possible. One word reply's like Yes, Handle, No, seem to be integral to his vocabulary. So when I got a multiple word reply I was pleased.

Dr. Barlogie's reply,
"Hi gary. I had assumed you would see me at Mt. Sinai. Seeing old and new patients and doing what I used to do. Emails [email protected], [email protected]
Let me know. Bart"

OUTSTANDING NEWS! So for those existing patients who want to follow Dr. Barlogie or a potentially new patient can contact him at the emails listed above. My other thoughts about this major move include the following. With Dr. Barlogie joining the myeloma team led by Dr. Jagannath a former colleague, New York now has one of the worlds most exceptional myeloma teams. Patients from Little Rock who want to follow Dr. Barlogie have little to worry about in that Dr. Jagannath surely has a similar support staff as was available at UAMS. In addition, Dr. Barlogie will be working on high risk myeloma, which I believe is the key to cure for all myeloma. To think he would not be in the mix of doctors trying to solve high risk myeloma would be disastrous to the myeloma cure effort. I believe Mt. Sinai will be the East Coast equivalent of UAMS. If you stay with UAMS or go with Dr. Barlogie you can expect the same exceptional care, and if low risk you will have a 50 to 60 percent chance of CURE. Just like the Myeloma Crowd Research Initiative, Dr. Barlogie believes if we cure high risk myeloma we cure all myeloma.

Good luck and God Bless your Myeloma Journey/ [email protected]

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

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The Myeloma Road Map To Improved Survival - GEP (Gene Expression Profiling)

9/10/2015

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Caryn Anderton, the Director of Marketing for Signal Genetics, was kind enough to provide a blog post on Gene Expression Profiling. It is titled "What's in your Genes?, and follows my brief introduction. The best and most knowledgeable and progressive myeloma specialists have embraced risk assessment to help map the best and most appropriate treatment for their myeloma patients. I am often shocked to find out many myeloma patients have no idea whether they are high or low risk, or what chromosome abnormalities they may have. I can only assume one of several reasons for this to occur-- the most likely being doctors and patients do not know where to get the test completed, the doctors do the test and just do not see the need to educate their patients, or they do not do the testing from a lack of experience with myeloma. The European Myeloma Network recommends Gene Expression Profiling for multiple myeloma patients. This recommendation came in March of 2014 and you can read about it if you CLICK HERE. GEP is also included in the U.S. National Comprehensive Cancer Network and the International Myeloma Working Group guidelines. Caryn's in depth blog post follows.

Good luck and God Bless your Myeloma Journey/ [email protected]

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!

8/22/2015

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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/ [email protected]

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/ [email protected]

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/ [email protected]

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

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