Blog Posts

A True Myeloma Hero, Pat Killingsworth Is Tragically Gone!

2/12/2016

I find it very difficult to write anything about Pat and his passing. Each time I try, I find it hard to see the screen thru my tears. So I will just let all his friends and the myeloma patient community do it for me. The following are just of a few of the tributes to Pat, who was my dear friend, Pattie's adoring husband, loved by his family, friends, and the entire myeloma patient community.

The MyelomaCrowd.com's Jenny Ahlstrom wrote a heartfelt goodbye to Pat in a post titled "Goodbye Dear Friend: A Tribute to Myeloma Advocate Pat Killingsworth" To view CLICK HERE.

Just look at the over 130 comments on Pat's last two blog posts if you CLICK HERE, and HERE.

Cure Talks Priya Menon posted "Remembering Pat Killingsworth - Saying Good Bye to a Dear Friend " - CLICK HERE and the Cure Talks panel said there last goodbye to their beloved fellow panelist Pat if you CLICK HERE.

The MMRF Multiple Myeloma Research Foundation had a post you can see if you CLICK HERE.

Patient Power posted "The Loss of a Patient Power Friend" - CLICK HERE

Myeloma Teacher Cynthia Chmielewski posted - CLICK HERE

Dana Holmes Smoldering Myeloma Group - CLICK HERE

The Myeloma Beacon had a post titled "Remembering Pat Killingsworth" which has over 60 comments- CLICK HERE

Matt vs Myeloma provided a blog post "Rest In Peace Pat Killingsworth" - CLICK HERE

The Florida Times Union's Jacksonville.com wrote in the Home/News - CLICK HERE

The IMF (International Myeloma Foundation) of which Pat was a Support Group Leader and a IMF myeloma ambassador provided a column in the IMF Myeloma Minute - CLICK HERE, Robin Tuohy wrote a post called "Keep Smiling My Friend" - CLICK HERE, and a facebook post. - CLICK HERE

I could go on and on because Pat was one of the few people in the world that seemed to be loved by all. Pat beat myeloma and was in sCR, and he will continue to be an inspiration to me and the entire myeloma patient community. Please share some memories of Pat by viewing the attached video.

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Thirty Minutes Of Exercise A Day Keeps Cancer at Bay! Up to a 50% Improvement!

2/7/2016

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A little over 2 years ago I wrote this post on the potential benefits of exercise on myeloma survival. Pat Killingsworth had just completed a three part series that Danny Parker authored on the benefits of exercise on myeloma life expectancy, survival rate, and the probability of relapse. I have found little data myself on the impacts of survival for blood and bone diseases like multiple myeloma, but Danny has gotten down into the nitty gritty of the impact of exercise on the biology of multiple myeloma. You can read the entire series if you click on the following links: PART1, PART2, & PART3.

When I was going through my stem cell transplants, they were very insistent on making sure that we had at least 30 minutes of exercise every day. And as any person who has gone through the SCT process, you really do not want to do much of anything, but obviously as noted by Danny and Pat, there are benefits from exercise that are extremely important to the patients long term survival.

Do you know who this is on the left?? Because if you have multiple myeloma you are on average 69 years old and know that this is Jack LaLanne who was considered "The Godfather of fitness". Jack died at age 96, well past the 46 year expected life expectancy for a male born in 1914. Few of us will look like this, but the benefits of exercise does not require that you do any more than 30 minutes of exercise a day.

The majority of data on life expectancy, survival rates, and a reduction in the probability of relapse come from studies of the far more common forms of cancer. And as could be expected, the rarer the disease the less data that is available. I think that the data that Danny and Pat provide explains the biology of exercises benefits, and as a result we can hope that the experience from the studied cancers can transfer to multiple myeloma.

So what do some of the studies for other cancers show. Some of the more robust studies come in the area of breast cancer, and colon cancer. You can do your own research on these cancers, however, I will provide a few examples.

Dr. Meyerhardt, of the Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, is one of the country's leading researchers on the impact of lifestyle factors on cancer outcomes. He stressed that regular non-strenuous exercise can significantly improve survival in people recovering from colorectal cancer. Colorectal cancer recurrence or death was reduced by 49% in the people who regularly exercised.

In 2005, Harvard researchers found that simply walking on a regular basis helped breast cancer patients. The study focused on about 3,000 women diagnosed with breast cancer who are part of the Nurses’ Health Study. Those who regularly walked three to five hours a week (or got comparable exercise) were 50% less likely to have a recurrence of their cancer than women who exercised less than an hour per week.

So, IF, and it is a big IF, we myeloma patients can obtain similar benefits from exercise, then it is time for all of us to get moving, join a gym, walk, ride a bike, and any other activity that your physical limitations will allow. Because a 50% benefit is a remarkable improvement to obtain without much cost or effort at all. Recently, Myeloma Crowd has started a program to help all myeloma patients to get fit, and this program is call Muscles for Myeloma. This program is designed to get you started on becoming fit to fight myeloma, and help fund a cure. You can find out about this program if you CLICK HERE.

And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com

For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

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Myeloma Patient Advocates In Action. Advocating For You!

1/25/2016

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The Multiple Myeloma Community has always had a unique synergistic combination of myeloma specialists, researchers, patient advocates, myeloma institutions(IMF, MMRF, MCRI, LLS and MMORE), and pharmaceutical companies. Now more than ever patient and patient advocates have been asked to contribute their ideas, concerns, and recommendations to improve the myeloma patient experience and outcomes. I, Gary Petersen, the editor of myelomasurvival.com am honored to be considered part of this amazing group. Some of the most recent efforts follow.

CONQUER The Patient Voice

Article - Opportunities For Improving The Care Of Patients With Multiple Myeloma
Jack Aiello, Cheryl Boyce, Yelak Biru, Cynthia Chmielewski, and Gary Petersen

A roundtable discussion of patients with multiple myeloma was held in Boston on July 14, 2015, with the goal of gaining insights into the challenges and gaps that patients and their loved ones are facing.This article summarizes the views of the patients regarding their experiences with current treatments and other issues related to cancer care. The participating patients were Jack Aiello, Cheryl Boyce, Yelak Biru, Cynthia Chmielewski, and Gary Petersen. They have all had multiple myeloma for many years and have expressed their perspectives based on their individual struggles with the disease. In addition, as leaders of their communities of patients with multiple myeloma, they have gained insights into critical issues that patients with multiple myeloma face from diagnosis and throughout their survivorship. You can read the article if you CLICK HERE!

The Myeloma Crowd Research Initiative

The MCRI was started by Jennifer Ahlstrom, a myeloma patient and advocate, just as the IMF and the MMRF were started by a patient advocate. The premise for this proposal is high risk myeloma is undeserved and most myeloma in the end stage is by definition high risk. It is felt if you can find the cure for high risk myeloma you have found the cure for all myeloma. Unfortunately, the most likely cure for myeloma will be through the use of your own immune system to fight and kill the cancer cells. This is not a drug but a process, and as a result may not have the resources devoted to it like a drug would, therefore alternate forms of financing are required. As part of this program, patient advocates Jenny Ahlstrom, Lizzy Smith, Pat Killingsworth, Cynthia Chmielewski, Jack Aiello, and Gary Petersen are members of the MCRI Patient Advisory Board. You can find out more about this outstanding initiative if you CLICK HERE.

Myeloma Crowd TV

The first episode of Myeloma Crowd TV was broadcasting with Jenny Ahlstrom anchor. The first episode centers on the great news which was presented at this years ASH (American Society of Hematology) which was just this last December. Jenny puts it in a very patient friendly form. View the first episode below.

I have often said the two most important elements of a successful myeloma prognosis is to have a myeloma specialist on your team and to become your own best advocate. Recently, I was interviewed by Andrew Schorr of Patient Power and he gave me the opportunity to explain how very important it is to have a myeloma specialist on your treatment team. With the speed of new drug development and approval, and the breakneck pace of new treatment approaches, a specialist has become an absolute necessity. A listing of over 200 specialists can be found if you CLICK HERE. You can view the interview below.

Over two years ago prior to the resent flood of new myeloma drugs and treatments, Dr. Noopur Raje, a world renowned myeloma specialist and the Director of the Center For Multiple Myeloma at the Massachusetts General Hospital provided a similar plea "Why Should Myeloma Patients Visit A Specialty Center?" You can view this call to have a myeloma specialist on your team if you CLICK HERE.

On the second point of being your own best advocate Cynthia Chmielewski recently gave an excellent summary of the reasons and importance of being your own best advocate in a MCRI video and you can view it below.

And heartfelt thank you to all of the myeloma advocates and all they do for the myeloma patient community. You know who you are. You are the Jim's, Lori's, Nick's, Matt's, Kimberly's, Dana's, and Danny's of the world.

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

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Is The CANCER MOONSHOT The Only Solution To An Inadequate And Outdated System?

1/17/2016

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First we need to look at the current system and decide if it works well or not. Based on a recent analysis by Tufts University, the cost of a new drug is 2.6 billion dollars. MedicineNet.com reports it takes 12 years for an experimental drug to travel from the laboratory to your medicine cabinet. That is, if it makes it, and only 1 in 5000 drugs ever make it. So it is safe to say it takes a long time to get a drug to market and at a tremendous cost. So lets follow the money. The NCI or National Cancer Institute has a budget of $5 billion for all cancers. In 2014, 9 new cancer drugs were approved at an estimated cost of $23.4 billion. This is a discussion about the development cost of drugs and not about the pricing of these drugs. I will leave that to it's own blog post. It can therefore be argued the vast majority of funding comes from the drug companies, so without drug companies, their resources and desire for profit, we would have little to no progress in new drug development. Organizations like the American Cancer Society try to support research and provide $144 million each year, but this is just a drop in the bucket and the majority comes from the drug companies. So given our system we depend on the big pharma to do most of the heavy lifting. Given the profit motive, one can only expect the money will go where the volume is, and that would be breast cancer, prostate cancer, lung cancer and colon and rectal cancers. That leaves little for the other more than 100 other cancers. Lets look at one example that is close to my heart and that is multiple myeloma.

Multiple Myeloma, like brain cancer is considered rare and received just $45 million in NCI funding in 2014, yet in 2015 four new myeoma drugs entered the market. So why so much development and pharma funding for myeloma. This $10.4 billion in new drug development funding for myeloma is too good to be true. What magic does myeloma have? I think it has focus from a close knit group of exceptionally talented myeloma specialists (International Myeloma Foundation), a business model for drug funding and development (Multiple Myeloma Research Foundation), an active group of myeloma advocates, and drug companies who have found a future in myeloma treatment and drug development. Some of this experience may be transferable to other cancers in the moonshot, but even this remarkable group and its methods of handing myeloma has limitations, because the new best chance for cure comes from immunotherapies or using your own immune system to fight cancer. This is not a drug, but a process in many cases your own T cells, Mil's(marrow infiltrating lymphocytes) or dendritic cells removed, modified, and reintroduced back into the patient. These processes can be patented, but who will be the investors of a process which may not be a part of the drug companies business model. The MCRI or Myeloma Crowd Research Initiative is trying to fill that gap, however they can only fund a very few best in class projects for myeloma, and to have a chance to fund projects like this for all cancers it may just take a MOONSHOT.

There were many paybacks with the first MOONSHOT. It cost us $170 billion to put a man on the moon in today's dollars. We now spend just $5 billion dollars each year for cancer research, but this seems so terribly inadequate for the 589,000 patients in the USA who died from cancer in 2015, or the suffering of those living with cancer and their families to the treasure we spend each year for cancer treatment. This cost is $120 billion each year on cancer treatment, and with a cure these costs could be greatly reduced.

If anyone thinks this will not impact them, they are wrong because a recent study in the United Kingdom has found that 1 out of every 2 people will get cancer in their lifetime.
I hope and pray the initiative proposed by Vice President Biden and recently approved by the President will have the same dedication, emphasis, focus, and funding as the first moonshot to FINALLY cure cancer. To find out more about this remarkable MOONSHOT initiative by Vice President Biden CLICK HERE or CLICK HERE. What a wonderful way for a father to honor his son. From all Cancer Patients and their families, thank you Joe. Go Joe, Go. SOS!!

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Preventing Multiple Myeloma From Progressing: The Dana-Farber Study for Precursor Blood Cancers - by Jenny Ahlstrom of MyelomaCrowd.org

1/13/2016

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A Preface from Gary Petersen - If you find myeloma in stage one you will live three times longer than if it is found in stage 3. In breast cancer if you can find it in the DCIS prestaged form, you have a nearly 100% chance of cure vs. just 15% 5 year survival if found in stage 4. Myeloma has a 5 year survival of 46.6%, and is usually found in a later stage, so the sky is the limit if it is found in the early MGUS or Smoldering phase of myeloma. Dr. Morgan of UAMS believes early screening and diagnosis is the future of myeloma care and treatment, and Dr. Jesus San Miguel Professor of Hematology University Salamanca, Spain has completed some excellent work in the treatment of high risk smoldering myeloma. Dr. Ghobrial's work just could be the breakthrough which results in early treatment and cure. How great would that be? Thank You Dana Holmes and your group for championing this work. Dr. Ghobrial's explains it best in the following YouTube video.

Dana-Farber Cancer Institute is taking a fascinating approach to multiple myeloma. They want to shut it down before it even gets started. In 2014 they began a new initiative called the Center for Prevention of Progression of Blood Cancers (CPOP). At this center, they look at early conditions like MGUS and smoldering myeloma to learn why some people progress to myeloma and others don’t. Stopping myeloma before it grows legs could potentially cure thousands.

The project is a tissue bank that follows patients from the beginning of their diagnosis at early stages. They aim to develop targeted therapeutic agents that can eliminate the early clones of disease. Some of the blood cancer precursor conditions being studied as part of this protocol are monoclonal gammopathy of undetermined significance (MGUS), Smoldering Multiple Myeloma (SMM) or Smoldering Waldenström Macroglobulinemia, Early Myelodysplastic Syndrome (MDS), Monoclonal B-Cell Lymphocytosis, and Myeloproliferative Neoplasms (MPN). With a large database, they will be able to better understand who will progress and who will not, and what treatments may be the best for which patients depending on their molecular profiles. Dr. Irene Ghobrial, MD, PhD explains more about the program on Myeloma Crowd Radio.

Dana Holmes is a smoldering myeloma patient and is a strong patient advocate, creating a Smoldering Myeloma Facebook group as well as specific initiatives, like the Mambo for Myeloma. She is an enthusiastic participant in this program. Dana says:

"Many of us with either an MGUS or Smoldering Myeloma diagnosis are under close monitoring and nothing else. The early precursor stages of myeloma do not include treatment as a standard of care. There are many reasons for this, primarily, the potential toxicity of the standard of care anti-myeloma treatment regimes. This diagnosis really does cast you into a trifecta role of “watchful waiting with worry.” Many of us ask “what exactly are we waiting for?” and feel defenseless. Yes, there are indeed early treatment clinical trials available for those with high risk smoldering myeloma but you do need to meet very specific criteria to be eligible. And for those of us who don’t qualify, we get to just watch, wait and worry. I have been told that worry is useless and serves no purpose in the bigger picture of actually being diagnosed with myeloma. Although I fully understand this and agree in a practical sense, it is relative and nevertheless, the worry remains.

Becoming an informed patient during the precursor stages is immensely helpful. Being under the care of a top notch Multiple Myeloma Expert is another way to dispel more of the worry.

BUT, DOING something which will empower you takes it to another level! Many of us wonder if they are or have been studying Smoldering Myeloma and MGUS prospectively and the answer is YES !

We can now join the P-Crowd Study at the Dana Farber Cancer Institute Blood Cancer Prevention of Progression Clinic (BCPC) and become part of the future solution! It is currently open to patients in the U.S.

Many of the members in both my SMM and MGUS Facebook groups are already participating. The PCrowd Study is a prospective study trying to unravel the unknown of why some of those with the precursor stages of MGUS and smoldering myeloma are more likely to progress to active disease than others. The goal would be to someday find a way to prevent actual progression. It is a an easy study to participate in, we are asked to send in samples of either our serum or bone marrow biopsies.

This is a GREAT way to help make a difference in understanding SMM and MGUS better, a biopsy tissue sample or a blood sample is all it takes. I have “donated” both. This honestly could not be an easier process to participate in what will likely produce invaluable data for the advancement of unraveling the mystery of multiple myeloma in the precursor stages.

It is so simple, you collect the samples during your normally scheduled lab tests and appointments, and mail the samples to the Clinic in Boston in a prepaid express envelope! It is just so easy to participate and enroll BUT so very important to help move research forward. These brilliant researchers need OUR help and participation, I know I want them to be able to unravel this confounding puzzle. Think of it as your chance to make a real difference while you watch and wait…and of course worry! Carpe Diem !!"

To be part of this first-of-its-kind study, click here. To learn about study details, click here.

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

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Holiday Blessings For Myeloma Patients? Now More Than Ever!

12/23/2015

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In the twelve years between 2003 and 2011 we had 4 drugs approved for the treatment of multiple myeloma. This was 4% of the total of all oncology drugs approved during that period, and because myeloma is only 1% of all cancers you could think we were blessed to have drug approvals 4 times the number one might expect to be developed. I think this is testament to the coordinated and dedicated efforts of myeloma specialists and researchers, IMF, MMRF, drug companies and myeloma advocates. However, this year we have had 4 drugs approved in just one year and this is 21% of all oncology drugs approved this year to date. I say thank you for this outstanding effort and all who have contributed. A cancer which represents 1% of patients with 21% of drugs approved is MIRACULOUS. However, I have one HUGE caveat, which is myeloma specialists will be the only ones who will be able to provide patients the full potential of these new drugs. The importance of having a myeloma specialist on your team to provide treatment or a plan for your local hematologist/oncologist to administer has always been a must have for myeloma patients. Now, however this bounty of new drugs enhances this need, and can best be explained by use of an example.

I recently received an email from a patient who wrote the following,

Hi Gary

Was wondering if I can ask you a question regarding the survival stats you have on your site. Do you know if they reflect the usage of the "new" triplet combinations such as RVD? I was just reading this interview from a couple weeks ago at the ash conference: http://www.targetedonc.com/news/triplets-in-newly-diagnosed-multiple-myeloma-a-qa-with-s-vincent-rajkumar-md-?p=2

From this interview it sounds to me like the triplets are expected to increase survival even more? But I was under the impression that triplets such as RVD have been around for a while and thus were already accounted for in your survival stats.

Thanks for any info and Merry Christmas!!

This was a great question and he had me thinking, if RVD has been part of the mainstream treatment then why was the average life expectancy just 4 years on average and has not changed for the last 4 years. This did not make sense to me, and I did a little research and provided the following response.

You are right, RVd has been used for a long time as first line treatment for many patients, however it was not officially approved for first line use until Feb 2015. See the link: FDA Expands Indication for Revlimid (lenalidomide) in Combination with Dexamethasone to Include Patients Newly Diagnosed with Multiple Myeloma
And Velcade was approved for first line treatment in June of 2008 seen at the link: Velcade (bortezomib) is Approved for Initial Treatment of Patients with Multiple Myeloma

However Mayo offered me Rev as first line treatment in 2006, and UAMS treated me with Velcade in 2006 as well. Most myeloma specialists have been using it in clinical trials, off label, or through compassionate use years before official approval.
Local oncs many have followed labeling, so the answer to your question is yes and no. It was really blended, and it is also a large part of the reason myeloma specialists have reported average life expectancy 2 to 3 times the national average.

The addition of the 4 new drugs this year will just add to the need to have a myeloma specialist on your team. You do not need to go to a specialist all the time and the myeloma specialist can set a treatment plan in place to be followed and implemented by the local oncologist under the supervision of the myeloma specialist. And to follow up on this I will quote from a passage on my blog post on How To Beat the Average Myeloma Life Expectancy?

Multiple Myeloma is a rare blood cancer, so many hematologist/oncologists may not see one patient in a year. As a result not all oncologists or hematologists are the same. However, some are very skilled and experienced with Multiple Myeloma and have treated many myeloma patients. The data shows these myeloma specialists provide an average life expectancy of 10 years or more, while the average remains stagnant at 4 years. For a listing of these exceptional specialists CLICK HERE or for a more extensive list without survival history just CLICK HERE. And obviously, if your myeloma specialist has an average patient life expectancy of 10 years, their patients will beat the average by more than twice the average. This is what I did when I chose to get my SCT(stem cell transplants) at University of Arkansas for Medical Sciences, UAMS, which has a myeloma program called MIRT, Myeloma Institute of Research and Therapy.  At the time they had over 10,000 transplants under their belt, and as a result they were expert at the process, and knew what could go wrong and had a plan in place to get you through any potential complications.   I have found from my work on this site that centers like Mayo, Dr. Hari(Medical College of Wisconsin), UAMS, or Dr. Berenson's (IMBCR) have very different approaches to treatment, but because they are expert in what they do, they have similar results.   A brain surgeon is who you would choose over any other surgeon if you had a brain tumor, why would you not do the same for myeloma? Find out how to find a myeloma specialist by CLICKING HERE or CLICKING HERE .

Myeloma specialists have access to drugs that other oncologists do not. Because they are the thought leaders, they are involved in clinical trials, and can obtain some drugs through other programs that lesser known oncologists do not have access to. Worse yet, oncologists who are not myeloma specialists may not even know that some of these drugs even exist. For example, some of the well connected specialists have access to unapproved drugs through special programs. Or some specialists can use drugs that are only approved for relapse or secondary therapy options (Krypolis and Pomalyst, Elotuzumab, and Daratumumab), and obtain approval to use them for newly diagnosed patients. They also have access to the best clinical trials like KRD for first line therapy which provides a response in nearly100 percent of patients. When you run out of options with the currently approved drugs, they can provide access to those that have done great in clinical trial, but are not currently available to the general public. Because you need a significant infrastructure to conduct clinical trials at your facility and they cost the facility $15,000 per patient, few local oncologists have access to clinical trials.  Sometimes it is who you know!

Merry Christmas, Happy Hanukkah, Happy Holidays, Happy New Year, 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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What Did ASH 2015 Mean For The Myeloma Patient? HOPE!

12/11/2015

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There was so much great news that came out of ASH 2015, and the volume of technical information was more than enough to get your head to spin and to let yourself get overwhelmed with the complexity and detail. It continues to support my belief that myeloma specialists are very knowledgeable about this disease and keep up with the most recent flood of new promising research, and they are the only ones truly able to adequately treat or provide a treatment plan for myeloma patients. Now that I have had time to digest the mountain of information, and I can actually break ASH 2015 into just one word for the myeloma patient community and the word is HOPE. My takeaways from the meeting include.

- Great new drugs have been approved for Relapsed and Refractory myeloma patients. Daratumumab, Elotuzumab, and Ninlaro all could be game changers, and will work best in combination with existing novel agents.

- Immunotherapy has taken center stage at ASH in general and for myeloma in specific. Great work is underway with the use of CAR T cells, MIL,s. and the use of dendritic cells to develop a vaccine. Initial results have shown some patients with 90+ percent plasma cells in the marrow going all the way to 0. Cure potential? Maybe!.

- The existing treatments have become seasoned and now show improved progression free survival and overall survival. RVd (Revlimid, Velcade,dex) has been proven to be more effective than Rd. Mayo Clinic has modified their excellent mSmart treatment recommendations to substitute RVd for Rd and CyBorD for standard and intermediate risk patients. The use of Kyprolis and Pomalyst are being used in combination with just about everything in clinical trials and will one day be part of approved initial therapy for newly diagnosed patients. KRd, with and without transplant, has shown some great results.

- There has been a consolidation of the treatment continuum. Most now agree to a regimen for newly diagnosed transplant eligible myeloma patients of induction, transplant(one or two), consolidation, and maintenance(finite or continuous).

- High Risk disease has been identified as an unmet need in the specialist community with many new treatments developed which now negate some negative prognostic indicators, and more are in the clinical trial pipeline. Daratumumab and Elotuzumab in various combinations have shown efficacy for some high risk features.

- Minimal Residual Disease testing has become a required test to help to follow disease progression. New Next Generation Sequencing has made testing for residual disease far more sensitive. It appears to be the next leap forward in testing.

- Gene Expression Profiling is the key to future advances in patient specific treatments. This provides a baseline to guide treatment discussions in the future. You will never have an accurate baseline without this profiling.

- Drug companies have begun to partner with patient advocates to help improve awareness in the general population and in the General Practitioner community. Takeda supported the MCRI high risk cure initiative, and Sanofi supported the Mambo for Myeloma awareness and funding initiative. I hope this becomes part of all drug company patient advocacy programs. This is a big step in changing the image of the drug companies from Big Bad Pharma to a real Myeloma Partnership. Misdiagnosis and delayed diagnosis is one of the biggest unmet needs and this might be a life saving cooperative effort to change this.

These are my top line reads of what the game changing developments were at ASH 2015. If you want to drill down into the detail you can search by the keyword Multiple Myeloma and read all of the abstracts from the conference.if you CLICK HERE. There are nearly 300 myeloma abstracts. So we have some outstanding news out of ASH, but where do we go from here?

- The new monoclonal antibodies (DARA and ELO) drugs have been approved for Relapsed and Refractory patients, and will be mixed and matched with all of the currently approved drugs in the newly diagnosed and relapsed and refractory population.

- Ninlaro as an oral treatment will eliminate the myeloma patient's weekly or biweekly infusions when taking IV or subQ injections of a protesaome inhibitor. Insurance companies should love this because it will eliminate the $1500 to $3000 infusion cost. The cost to Medicare patients will be an issue because the law prevents drug companies from providing copay assistance to the elderly. They do allow it for younger working patients with commercial insurance. I hope our government is ignorant of this unmet need and not uncaring of the needs of elderly cancer patients.

- Investment in Immunotherapy is a challenge. Most funding for new drugs come from the drug companies, and they have not as yet jumped on this bandwagon. Celgene is the first to do so, and now we have such great initial data I think the wagon will be full in no time. Those that do not get with this program will be at a competitive disadvantage..

- Myeloma Specialists know about these new drugs, the importance of MRD testing, and the need for Gene Expression Profiling, but how do we get the local oncologist up to speed on the breakneck progress being made in myeloma treatment? And 1 in 5 myeloma patients continue to die from misdiagnosis and delayed diagnosis. This is an unmet need and I am hopeful the new drug company patient partnership may have an impact.

- Progress in High Risk disease will ultimately be the key to a cure in all myeloma. Myeloma Specialists recognize this and a new focus is being made in high risk disease. A specialist and patient advocate initiative called the MCRI (Myeloma Crowd Research Initiative) is another part of this new focus.

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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Front and Center at ASH 2015 – The Immunotherapy Revolution in Multiple Myeloma

12/10/2015

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As the name implies, there seems to be great excitement and hope in using the patients’ own immune system to fight and ultimately cure myeloma. For the most part, chemotherapy has been the primary weapon in the myeloma specialists’ treatment toolbox and immunotherapy was considered “Not Ready For Prime Time”. I attended an ASH symposium where Dr. Jatin Shah from MD Anderson Cancer Center was the program chair, with presentations from Dr. Sundar Jagannath of Mount Sinai, and David Avigan of Harvard Medical School.

As a preamble, I have to let you know this topic is very complex, and in the beginning they asked a number of questions used to see how much the audience knew about the biology of immunotherapy. The answers were multiple choice and from the results it looked like we might have gotten more consensus if we used darts at 100 yards. After the meeting, the same questions were asked and the results did not change that much. The audience was made up of doctors, researchers, knowledgeable patients, and health care professionals. So I will try to do my best to give you a top line overview of the meeting, but skip the technical information.

Dr. Shah provided a preface and outline of the program. He stated there have been many areas of new understanding in the myeloma specialist community. Triplet combos are much better than doublets, early transplant is better than delaying transplant till relapse, and maintenance is preferred to no maintenance. However there are still challenges: High-risk myeloma, relapsed and refractory myeloma, and we are not curing a significant number of patients.

He stated some of the treatment goals should be to manage the clonal evolution, focus on high risk disease, and target the immune system.

Dr. Jagannath first pointed out that myeloma presents at diagnosis with many clones. When you go through treatment all but the drug resistant clones remain. As a result, more resistant clones are developed. In myeloma cells CS1 (also known as SLAM-F7) is expressed on 95% or myeloma cells and in NK cells but not in other cells, in the body. This makes it a good target for any immunotherapy.

Elotuzumab uses this as a target and has recently been approved. It does not work well as a single agent but does work in a synergistic way with Revlimid. Elotuzumab, Revlimid, and Decadron had a 32 month progression free survival in a pretreated patient populations. Elotuzumab may negate some of the high risk cytogenetics. Elotuzumab, Revlimid and dex vs. Revlimid and dex alone have a very similar toxicity profile, so the addition of Elotulzumab does not add to toxicity which is usually not the case with other drugs.

Daratumumab targets CD38 which is expressed on most myeloma cells, however it is also expressed on some CD4, CD8, and NK cells. Daratumumab has many different mechanisms of action, and as a single agent had a response rate of 36%. In addition, there were low grade 3 and 4 side effects, which is quite good. It worked across all types of myeloma including those that were refractory to 4 lines of treatment. All however was not a bed of roses, in that the duration of the infusion can take up to 8 hours, and there is an infusion reaction in 43% of the patients during the first infusion. The second infusion takes on average 4 hours and follow-on infusion time is drastically reduced to around around an hour or less. CD38 is expressed on red blood cells and as a result patient may require a blood bank infusion. In addition, the Daratumumab interferes with blood typing so patients need to know their blood type before they receive a Daratumumab infusion.

How might these drugs be used? They both are for relapsed and refractory myeloma and we were told, “Think E before D.” Elotuzumab has been approved for use with at least one prior therapy while Daratumumab has been approved only after 3 lines of treatment. Future trials will be forthcoming as a first line treatment.

Dr. Avigan discussed a new immunotherapy approach which combined marrow cells with dendritic cells and these were used to vaccinate heavily pretreated patients. The approach showed good results and were combined with Revlimid, which helps to expand T cells. This trial has treatment arms either with and without Revlimid maintenance and a multi-center clinical trial is planned.

At the conference, check point inhibitors were also discussed, which help the immune system hit the gas or the brakes to kill disease or not. Some of these checkpoint inhibitors (PD1 and PDL-1) are now being investigated as ways to take the brakes off the immune system so it can do it’s myeloma-killing job.

This is Gary Petersen editor@myelomasurvival.com and member of the MCRI Myeloma Crowd Research Initiative reporting to you from Orlando at ASH 2015. For more information about multiple myeloma CLICK HERE.

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Multiple Myeloma - ASH 2015 Part 1

12/6/2015

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

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