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If you could Double your Multiple Myeloma survival rate and life expectancy, Wouldn't You? Then why don't you???

6/21/2013

Parable of the Drowning Man
”There was a preacher who fell in the ocean and he couldn't swim. When a boat came by, the captain yelled, "Do you need help, sir?" The preacher calmly said "No, God will save me." A little later, another boat came by and a fisherman asked, "Hey, do you need help?" The preacher replied again, "No God will save me." Eventually the preacher drowned & went to heaven. The preacher asked God, "Why didn't you save me?" God replied, "But I sent you two boats!"

For those patients who have a myeloma specialist on their team and are part of an on-line or local support group, there is no need to read further unless you are just interested in understanding how smart you really are by being your own best advocate.

You may be saying what on earth is he thinking. Of course, I would double my life expectancy if I could!! Lets just look at the math. There is about 80,000 myeloma patients in the USA and if the world has the same rate then there are a total of 1,750,000 people in the world living with multiple myeloma. So it is my guess that the estimated 200 multiple myeloma specialists in the world are not able to see all of these patients. Nor do I believe that there are enough support groups in total or support groups local to myeloma patients to satisfy this patient population. So why do you need to be part of a support group and have a myeloma specialist on your medical team?

1) If you go to my web site www.myelomasurvival.com you will find that the average life expectancy for a myeloma patient is currently listed at 4 years by the US National Cancer Institute, whereas the patients of multiple myeloma specialists have excellent survival rates and have life expectancies of 8 to 10 years.

2) In addition support group membership has the benefit of learning more about the newest and best treatments, getting feed back on side effects, caregiver fears and help, medical billing issues, friendship, fellowship, and support. An audit that I conducted with some of the IMF support group leaders indicated that active support group members lived twice as long as the US National Cancer Institute published average.

There are two reasons why I think that people are not taking advantage of these two key elements for longer life expectancy. The first is that the best multiple myeloma specialists have a life expectancy two times greater that the 4 years quoted by the National Cancer Institute, and if all people were obtaining this quality of care the National Cancer Institute life expectancy would be closer to 8 to 10 years. In addition, you can get a second opinion for less than $300 from the web site 2ndMD at https://2nd.md/disease/multiplemyeloma, however it is my understanding that some of the multiple myeloma specialists listed have had few if any requests for a second opinion. The second reason is that there are two on-line support groups, one by the LLS, Leukemia, Lymphoma, and Myeloma Society which meets every Tuesday and is based on a Chat Line format, and the Cure Panel Support Group that is once a month, and uses an on-line interactive format. I have participated on both and there were only 2 to 3 people participating, and I was one of them. How sad!

Support Groups

If you are one of the hundreds of thousands of patients who do not have access to a support group you can be one of the initial members of two great support groups.

- The Cure Panel On-Line Broadcast is hosted by Pat Killingsworth, who is a MM author, a tireless advocate, and founded an IMF support group in west Florida. You can sign up for the next support group meeting which will be held on June 27th at 6:00PM if you just CLICK HERE. The topic for the meeting - “Be Your Own Best Advocate: Becoming an Empowered Patient!”

- The LLS On-Line Myeloma Chat is held every Tuesday and you can register if you just CLICK HERE.

- Another good resource is the Acor Myeloma Patient to Patient Support Group which is one that has been around for years and has close to 2000 members. You can sign up to be on the list if you CLICK HERE.

Myeloma Specialists

- If you would like a second opinion from a myeloma specialist then you can find a good listing if you CLICK HERE. An outline of how you can get a second opinion can be found if you CLICK HERE.

- If you do not have access to a myeloma specialist you can get an on-line second opinion from one of four excellent myeloma professionals at the web site.
https://2nd.md/disease/multiplemyeloma.

- And if you don't have access to one of the two possibilities above for a second opinion, you can ask your hematologist/oncologist to follow the mSmart program published by Mayo Clinic. mSmart happens to be a cook book method of myeloma treatment that is intended to allow your hematologist/oncologist to follow the same methods used by Mayo Clinic and then to hopefully duplicate for you Mayo's excellent life expectancy and survival rates. You can read my blog post on this subject if you CLICK HERE.

As always good luck and may God Bless your families myeloma journey/ Gary Petersen [email protected]

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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Multiple Myeloma meets Star Wars! Will nanoparticles one day find, then kill myeloma cells, and provide the CURE? Listen to the rebroadcast of this June 11th Cure Panel to find out more about exciting new developments in nanotechnology for cancer.

6/3/2013

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The Cure Panel Talk Show which featured Dr. Anil K. Patri who is Deputy Director at Nanotechnology Characterization Laboratory (NCL) at the National Cancer Institute. Dr. Patri discussing "Nanotechnology in Oncology". Now that the broadcast has aired you can listen to the a rebroadcast if you CLICK HERE. In the first day it was rebroadcast 8655 times, a record for the Cure Panel program.

I have heard of nanotechnology, but was under the impression it was one of those way-out technologies with little if any practical application. It, however, most likely made really great brain food for all the materials scientists of the world, who could now make workable machines that were really, really, really small. And even when Priya Menon asked me to participate in a Cure Panel Broadcast on the subject, I hesitated, not really understanding how this could have any application for multiple myeloma. So I dragged my feet in replying to her email until I at least had a chance to do a little research on the subject. The very first thing that got my attention was that Doxil, a myeloma chemotherapy drug is a product of nanotechnology. The old drug doxorubicin is coated with nanoparticles or as explained on the Doxil web site:

“STEALTH® technology is composed of lipid nanoparticles that incorporate a polyethylene glycol (PEG) coating. This coating helps evade the potential impact of the immune system and enables STEALTH® technology to provide the precise delivery of drugs to disease-specific areas of the body.”

Another drug for Breast Cancer called Abraxane is an Albumin-Bound Nanoparticle Drug. This is not a new drug but a nano coating of a drug called Taxol, but is twice as effective in the new form than its uncoated sister drug. The same mechanism that delivers more drug to the cancer cell will be used for many other cancer drugs including myeloma therapies. There are also many other developments that Dr. Patri will be presenting.

You might wonder why you have not heard much about this initiative, and for one thing it just began in 2004. As we are all painfully aware, all new drug development can take as much as 10 years or more to get from idea to FDA approval. I found this quote," The National Cancer Institute (NCI) at the National Institutes of Health (NIH) recognized the value of nanotechnology in oncology applications. In 2004, NCI established the Alliance for Nanotechnology in Cancer (Alliance) by pledging approximately $150 million to the five year initiative to fund a constellation of eight Centers for Cancer Nanotechnology Excellence(Centers) and 12 Cancer Nanotechnology Platform Partnerships (Platforms), together with Multidisciplinary Research Training and Team Development awards (11 awardees) and the Nanotechnology Characterization Laboratory (NCL)."

So now after close to 10 years in the making we are starting to see the fruits of their remarkable work. A short bio of Dr. Patri follows:

Dr. Anil K. Patri is Deputy Director at Nanotechnology Characterization Laboratory (NCL) at the National Cancer Institute, Frederick. At NCL, team of scientists from multidisciplinary fields are working together to facilitate the development of nanomaterials intended for clinical use. Dr. Patri is involved in physico-chemical characterization and standardization of nanomaterials for the NCL and collaborates with scientists at National Institute of Standards and Technology (NIST) and Food and Drug Administration (FDA). Prior to joining NCL, he was working as Staff Scientist at Center for Biologic Nanotechnology at University of Michigan, where he developed dendrimers- based nanomaterials for targeting, imaging and drug delivery applications. Dr. Patri received his Ph.D. in Organic Chemistry from University of South Florida, M.Sc. in Organic Chemistry from Aligarh Muslim University, and B.Sc. in Organic Chemistry from Osmania University, India.

I look forward to hearing from you at the broadcast. And as always may God Bless your Myeloma Journey. Gary Petersen

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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Improve your own Multiple Myeloma Life Expectancy - Exercise (30 minutes a day keeps the Myeloma at Bay)!!!

5/21/2013

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Pat Killingsworth has 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.

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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Multiple Myeloma Support Groups SAVE LIFE and improve life expectancy - None in your area! You can now join the Cure Panel on line Support Group !

5/14/2013

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I have written in the past that one of the best things your could do is to become your own best advocate, and that knowledge is Power and can SAVE LIFE for the multiple myeloma patient. Support Group membership is one of the key ways to obtain this knowledge, and I wrote a blog post called, Multiple Myeloma Support Group Members DO have a longer Life Expectancy and Improved Survival Rate! But is it the chicken and the egg? In my research for this article I had found that the Support Group leaders reported a life expectancy 2.2 times greater than that reported by the National Cancer Institute. But there is one huge caveat, and that is that support groups are not always available in your area, or you do now live in an area with a patient population that can support a group. What do you do? Travel 200 miles to a meeting? Well now you can join an on line support group that has it's very first meeting on May 15th at 6:00 pm EST. You can still sign up for this support group meeting if you just email Priya Menon of Cure Talk at her email address: [email protected] . So you can be anywhere in the world and you can be a member of an outstanding support Group. Pat Killingsworth, author and advocate, has been all over the United States giving presentations at support groups, and has assembled what he believes is an exceptional leadership group for these meetings.

You can read all about this on line support group in more detail if you just CLICK HERE! A short bio for each of the Support Group Meeting Leaders is below for your convenience.

PAT KILLINGSWORTH

Myeloma Beacon columnist and blogger, Pat was diagnosed with multiple myeloma in April 2007 at age 51. Pat is an author of four myeloma books Pat’s books include, Living with Multiple Myeloma, Stem Cell Transplants-A Patient’s Perspective, and New Multiple Myeloma Therapies, and Financial Aid for Myeloma Patients and Caregivers. To book your copy of Pat's latest book, click here. Pat also maintains two blogs, Living with Multiple Myeloma and Help with Cancer.

SANDY HIRSCH

Sandy Hirsch of Charlotte, NC was diagnosed with Multiple Myeloma in August of 2009. Sandy and her husband, David, started a myeloma support group in 2010, the first in Charlotte.

SUE VANDUYN

Caregiver Sue VanDuyn has been married to Harold for almost 24 years. Harold was diagnosed three years ago with MM, had a stem cell transplant in September, 2010, and has been in stringent CR ever since the transplant. With the help of the Int’l Myeloma Foundation, Sue and Harold started a myeloma support group for the West Michigan area in June, 2011. Sue volunteers for the International Myeloma Foundation (IMF) as a caregiver advocate and travels to Dallas, Texas each July to assist the IMF at their annual Support Group Summit.

Hope you enjoy this meeting, and learn a lot. As always may God Bless your Myeloma journey. Gary Petersen/[email protected]

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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Multiple Myeloma Survival Rates FINALLY Show the Improvement we had hoped and prayed for!!!!!

5/6/2013

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I must apologize for the tone of my last post about the new data from The National Cancer Institute. They had updated the SEER data on 4/24/13, and the average life expectancy remained at 4 years, and I had expressed disappointment and understated the most important finding in the data. That finding was that the first year survival rate had taken a significant leap forward with an improvement of 19% over the previous first year survival rate.

There is not one multiple myeloma specialist that I know of that does not quote their current life expectancy in the range of 7 to 15 years. So why has the 4 year rate not shown any improvement over the last 3 years. One of my readers John wrote,

" Very interesting to say the least! I've got to believe that the current stats are way behind the actual survival expectancy. Great article Thanks, John"

Daaaa!!!!! The most recent 4 year survival data is for patients that were newly diagnosed in 2006, and in 2006 the approved first line therapy's were still pretty inferior to the new novel therapy's. For the first 5 months of 2006, there were no novel agents approved for the newly diagnosed multiple myeloma patient. Thalidomide was the very first novel agent to be approved for first line therapy, and it received approval in May of 2006. So prior to May of 2006 no one could receive treatment with any novel drugs unless they were getting it via clinical trials or though compassionate use programs obtained mainly at the very best multiple myeloma treatment centers. Velcade was approved for first line treatment in June of 2008, and Revlimid was approved for use with at least one prior therapy in June of 2006. So one could argue that the majority of impact of novel agents will not have a full year impact from the new standard first line therapy's of Rd(Revlimid and dex), CyBord(Cytoxin, Velcade, and dex), or RVd(Revlimid, Velcade, dex),et. al. until 2008 or later.

The most positive information coming out of the National Cancer Institute numbers is for the recent one year survival rate statistics. If you look at this graph, there is a full 19% improvement between the last two years of data. It is a 4.4% percentage point reduction of the death rate from 23.4% to 19%. There was little improvement in the prior 8 years, so this leap forward is very significant. One could expect this to reflect an improvement of the life expectancy from 4 years to close to 5 years for those who were diagnosed with multiple myeloma in 2009.

One thing I have found is that the best myeloma centers have a far better 1 year survival rate than the average center which provides data to the National Cancer Institute. These centers have been using these novel drugs for a long time, either in the clinical trial setting or though compassionate use programs. Some of the best centers report a first year relative survival rate of between the mid to high 90%'s. Should the overall first year rate improve to just 90% for all of the hospitals reporting to the National Cancer Institute from the current 81%, we could expect to see another 47% improvement in survival to 7 years or greater. Now that is good news for the myeloma patient community. So thanks John for getting me to take another look at the data.

So the current survival statistics do not yet reflect much of the impact of these new novel agents, or any of the newly approved treatments for relapse and refractory myeloma, such as Kyprolis, and Pomalidomide.

I could never understand why the National Cancer Institute was reporting that 22350 people will be diagnosed in 2013, and the number who are expected to die from multiple myeloma is just 10710 for 2013. Why the big difference? The myeloma specialists have been saying there is a cure rate of 10 to 20% now, but could the current rate be much better? Or could the survival rate have taken great leaps forward in recent years and this is being seen in the numbers as part of this difference. There are other potential reasons, but I would like to hope and pray it is one of those stated above.

Best Regards and may God Bless your myeloma journey/ Gary Petersen [email protected]

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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Multiple Myeloma Life Expectancy Remains Stagnant for the Third Straight Year - What the #@&% ??????? But I do see some light!

5/1/2013

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The National Cancer Institute has updated the SEER data as of 4/24/13, and the average life expectancy remained at just 4 years. It has now been three years that the average life expectancy has remained the same, or in other words the 4 year survival rate is 50%. This continues to astound me, in that I would think that the standard therapy's using the new novel drugs has been available for years, yet we have seen no improvement. What the heck is going on?

There is not one multiple myeloma specialist that I know of that does not quote their current life expectancy in the range of 7 to 15 years. So how can this still be the case??

I can only surmise that most patients are getting care or their direction for care from other than a multiple myeloma specialist, or that many specialists really don't know what their survival performance truly is(something I have found during my research, poor data processing, or just not a clinical priority), or they are quoting current clinical trial data which generally has a younger and healthier patient and is usually using the newest standards of care, or,or, or ..... But in reality I am a little confused by the large gap between what is currently being quoted by myeloma specialists and what is reported by the National Cancer Institute.

There is a little light even in the graph of 4 year survival. It is not the last three years but the three year prior to that where life expectancy improved by 13.2%. But this is not the quantum leaps that we have expected to see given the constant 7 to 15 year references.

I think the most positive information coming out of these numbers is for the recent one year survival rate statistics. If you look at this graph, there is a full 19% improvement between the last two years of data. It is a 4.4% percentage point reduction of the death rate from 23.4% to 19%. There was little improvement in the prior 8 years, so this leap forward could be very significant.

One thing I have found is that the best myeloma centers have a far better 1 year survival rate than the average center which provides data to the National Cancer Institute. Some of the best centers report 1 year relative survival of between the mid to high 90%'s. And as I had reported before, the survival rate improves with each year that your live. You can see that analysis if you just CLICK HERE. So, I would hope and pray that the 4 year survival for patients who were diagnosed in 2009 will also show a 19% improvement over the recent 4 year survival rate. Maybe, the entire health care system is just slow in digesting the newest and most effective myeloma treatments, and as a result the ones that are receiving the best care, or second opinions from a myeloma expert are just too small a component of the total myeloma patient population to make a dent in the numbers. This will not change until these best methods spread through osmosis throughout the health care system. What I don't understand is that Dr. Ravi Vij, Dr. Mazumder, and Dr. Hofmeister will provide a second opinion for $250 or less on the web site https://2nd.md/disease/multiplemyeloma and it is my understanding that this is not being utilized much if any by the myeloma patient community. Like I often say, if you do not have a myeloma speicallist in your local area, SAVE YOURSELF, and get a second opinion from one any way you can.

The real LIGHT from this data is that the 1 year survival rate has FINALLY made a large one year leap, and this bodes well for next years National Cancer Institutes one and two year myeloma survival data, and for all survival data in future years. At least I hope and pray for us all that it does, and that this years 19% improvement is not a data anomaly.

Best Regards and may God Bless your myeloma journey/ Gary Petersen [email protected]

P.S. - I did a followup to this post and you can read it if you CLICK HERE.

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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Multiple Myeloma - MD Anderson's Dr. Robert Orlowski speaks on “Exciting New Drugs and Combinations for Myeloma” or Why survival rates and the life expectancy prognosis for myeloma patients will continue to improve!

4/27/2013

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Dr. Orlwowski was the featured speaker for the April Myeloma Panel broadcast, and his topic was "Exciting New Drugs and Combinations for Myeloma". He has an excellent bio, works for the number one cancer hospital in the USA(per US News)and perhaps the world, but he was in front of an extremely talented panel that is very hard to impress. So what did some of them have to say about his participation?

Pat Killingsworth said, " Dr. Orlowski is an exceptional myeloma expert. I would rank him among the top five in the world."

Nick Van Dyke said, "That was a great call and Dr. Orlowski was fantastic, both in terms of knowledge and in terms of "bedside manner" if you will. What a great guy!"

Jack Aiello said, "“I’ve seen & heard Dr. Orlowski speak many times and am always impressed by his ability to clearly articulate answers to complex myeloma questions so that patients/caregivers can understand and learn more about our disease.”

I also was very impressed with Dr. Orlowski's depth of understanding of Multiple Myeloma and how skillfully he was able to put it into terms that the panel, patients, and caregivers can understand. You can listen to a rebroadcast of the entire program is you just CLICK HERE!

If you would like a summary of the presentation and discussion, I have provided a summary of the broadcast in the following paragraphs. If you would like to follow Dr. Orlowski on Twitter his address is: https://twitter.com/Myeloma_Doc

Combinations for Newly Diagnosed

Dr. Orlowski started his discussion of "Exciting New Drugs and Combinations for Myeloma" by stating that he was recently at the early April International Myeloma Workshop in Kyoto, Japan and so he had some of the most recent updates on treatments. He felt the focus was on the use of combination regimens and believed that these combinations were the best way to get to a myeloma cure.

In the low risk patients there were excellent results from two drug combinations such as Vd(Velcade, dex) or Rd(Revlimid, dex) and three drug combinations of VRd(Velcade, Revlimid, dex), and CVd(Cytoxin, Velcade, dex). All of these work well, but none of these combinations will provide 100% complete response.

Exciting New Combinations for the Newly Diagnosed

KRd or Krypolis, Revlimid, and dexamethasone is a new combination in phase one and two trials in the newly diagnosed setting that has a remarkable almost 100% response rate. It appears to have a higher CR(complete response) rate or improved quality of response. The study is being coordinated by the US Cooperative Network and would be a great clinical trial for anyone who is newly diagnosed.

High Risk Newly Diagnosed Patients Remain a Challenge

For those patients who are considered high risk by either evidence of the 17p deletion based on the FISH test, or have a high risk signature from the 70 gene array panel, the outlook needs to improve. These patients, who represent 15 to 20% of all patients, have a life expectancy of only 3 years, with the current standard of care VRd(Vecade, Revlimid, dex) Induction, and followed by VRd maintenance.

An exciting new 4 drug combination includes a new antibody drug Elotuzumab, along with Velcade,Revlimid, and dex, or EVRd. Elotuzumab is an antibody that attaches to the myeloma cell and tells the immune system where the myeloma is, so the immune system can then target the cancer cells. This may have fewer side effects because it is a targeted therapy. The question to answer is whether this 4 drug combination is better than the current VRd standard of care.

Other New or Recently Approved Drugs

Ixazomib is in the same class of drugs as Velcade, however it is an oral proteasome inhibitor, and does not require a hospital visit for infusion. A trial using Ixazomib with Revlimid and dex or IRd has shown good results as presented in Kyoto, Japan. This combination provides a much better quality of life because the patient can take this oral therapy at home.

The recent approval of Kyrolis in July of 2012 and Polmalidamide in Feburary of 2013 for use in the Relapse and Refractory(RR) setting has shown a huge benefit to these RR patients. The most benefit from these drugs appears to be in combination with other drugs. An MD Anderson led study using KPd(Kyprolis, Polmalidamide, and dex) in the RR setting has shown a response rate of 77% in heavily pretreated patients. What is great about this combination is that it can be used outside the clinical trial setting by your local hematologist oncologist.

Another combination that is being evaluated by MD Anderson is the combination of Thalidomid, Relimid, and dex or TRd. These drugs (TR) are in the same class of drugs, but in combination have shown a response on patients who have progressed on Revlimid. This is also an all oral regimen and has had a 50 to 60% response rate.

Daratumumab is another new antibody drug under development. It binds to a different protein on the myeloma cell and helps the immune system find a good target. It has had a nice response rate with heavily pretreated myeloma patients. There will be a large trial coming up which should result in FDA approval.

ARRY 520 is a drug which targets a protein that inhibits myeloma cells from duplicating, and has no potential for neuropathy at all. ARRY 520(no name chosen as yet), plus Krypolis, and dex or AKd has shown good activity even for patients who have progressed on Velcade, Revlimid, and dex. This combination will be in test across the country.

In Summary

Dr. Orlowski, mentioned that he believes that there are two major spheres of thought, one of which is to use 1 or 2 drugs and save others available for relapse, or use combination of drugs early in the disease as possible(both newly diagnosed and RR) The data in ongoing, however there is a growing number of multiple myeloma specialists that believe the use of the combinations works better. Three and four drug combinations are better that two drug combinations. Although transplant was not mentioned in the doctor's presentation, he indicated later in the Q&A section that his standard of care would be induction(2 to 4 drug), transplant, and then maintenance.

Q&A Discussion

After the doctor's presentation, he took several questions from the audience. There were 22 questions entered, which Nick and Jack were kind enough to consolidate into 11, plus we had a few additional questions from the panel members. Please listen to this discussion if you would like to hear all of what was said, however I will summarize what I felt were some of the most interesting findings.

Dr. Orlowski felt that tandem transplants may be effective for some patients, but only those that did not get a CR(Complete Response) or the NCR(Near Complete Response). In most other cases he felt that in the era of the newer novel agents the induction therapies are now far superior to those used in the pre novel agent era. He noted there will be a large US trial which will compare induction with VRd(Velcade, Revlimid, and dex) with early transplant, and others that delay transplant to relapse. Dr. Orlowski feels that the myeloma cells are more sensitive to all drugs at the time of diagnosis when they have not developed any drug resistance. He would consider induction(2 to 4 drugs), transplant, and maintenance as his standard of care.

Pat had asked if there has been any trials that put the two antibodies(elotuzumab and daratumumab) in combination. Dr. Orlowski thought that would be an excellent idea if used in conjunction with Revlimid.

MD Anderson, has a myeloma immunotherapy project under a grant from the National Cancer Institute called SPORE. It has 4 different components as outlined in the abstract found if you CLICK HERE. The myeloma M protein is isolated prior to treatment and then used as a vaccine which trains the immune system to destroy the myeloma cancer cells. They plan to use this in conjunction with transplant, and if it works after transplant it may be tried prior to transplant. Another element of this project is designed to train the patients T cells to attack the patient's myeloma cells.

Concern over being on the placebo side of a clinical trial, and getting substandard care was expressed. In the context of clinical trials, placebos are usually not used in phase 1 and 2 studies, but only used in phase 3 trials which usually will compare the current best practice standard of care with a placebo, versus the standard of care plus a new drug. In addition, any patient can opt out of a trial if the patient chooses another course of care.

The Black Swan initiative is a hot topic and MRD(minimum residual disease) as a measure of response is integral to the program. Dr. Orlowski provided a history of myeloma disease measurement, and concluded that FISH, 70 gene array, and the 3 different ways of determining MRD are all great tools for use to detect low levels of disease and help determine if more treatment is needed or not. He believes that 10 to 20% of patients stay in CR for 10 years or greater and they may be cured.

Please listen to the entire broadcast to hear additional Q & A on 1) tests used to determine risk, and ways to use this data to determine treatment 2) the use of Ixazomib, Revlimib, and dex as an all oral maintenance regimen 3) treatment for high risk smoldering myeloma or treating myeloma now in a MGUS state 4) Is IgD myeloma more aggressive 5) GI issues from melphalan and long term maintenance therapy and, 6) body rash from Revlimid use.

I hope you find value from this exceptional program, and as always may God Bless your Myeloma journey. Gary Petersen/[email protected]

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

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Multiple Myeloma - What you Don't Know Might Just KILL YOU!!!

4/23/2013

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I came across an article by Sharon Begley of Newsweek and it definitely resounded in my mind. Her article is based on the premise that Care at a top Cancer Center may just save your life, and not knowing this fact might just KILL YOU! She also makes the case that most cancer centers covet their survival statistics as if they were state secrets, and Sharon is as confused as I to understand why this is the case. It has taken me nearly two years to get the cooperation of just 10 doctors, and it has been like pulling teeth, with the wonderful exceptions like, Dr Berenson, Dr. Hari, Dr. Barlogie, Dr. Faber, and several more.

Multiple Myeloma ???

< What a Myeloma Specialist might say about multiple myeloma cancer!!

I have made similar statements about mulitple myeloma specialists. That they can provide a life expectancy 3 times greater than the average facility, and have survival rates that are also 3 times greater for 5 years, but as much as 10 times greater for 2 years. Sharon makes a similar assertion for all cancers that are not widely seen by the typical local oncologist. This would include most rare incurable cancers, and most stage 4 cancers or those that have metastasized.

This became very personal to me when a neighbor of mine found out that his wife had stage 4 colon cancer. He was told at the local hospital by their oncologist that she had a 6% chance of surviving 5 years. I told him about my work with multiple myeloma, and that there is probably a center someplace in the United States that has better rates of survival for stage 4 colon caner. I did some research on line for him and this is what I had found:

M D. Anderson, Houston, TX - Dr. Steven A Curley - 5 year survival with surgery 50%

Memorial Sloan Kettering, NY - Dr.Leonard B Saltz, MD - 5 year survival rate 30%

Seattle Cancer Care Alliance - University of Washington Medical Center - 5 year survival of 27%

Mayo Clinic, Rochester MN. - Dr. Steven Alberts - 5 year survival of 19.2%

Northwestern University - 5 year rate of 7%

They will be going to MD Anderson, where the 5 year survival is 8 times greater than the average reported by the American Cancer Society. Sounds like exactly what I would do, but sometimes you "Don't Know, What You Don't Know!!", and it can KILL YOU.

You can read Sharon's excellent article if you just CLICK HERE! It is well worth the read!! Thank You Sharon for your excellent work, and hopefully together we can SAVE LIFE!

Best Regards to all my readers and may God Bless your families cancer journey/ Gary Petersen

For more information on multiple myeloma go to www.myelomasurvival.com

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Dr. Robert Orlowski is the Featured Speaker on The Cure Panel Talk Show on April 25 @ 6pm EST

4/15/2013

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***Now that this program has aired you can listen to the rebroadcast of this very patient friendly presentation on "Exciting New Drugs and Combinations for Myeloma" if you CLICK HERE.***

Fresh from the Myeloma International Workshop in Kyoto, Japan, Dr. Orlowski will be the featured speaker on the Myeloma Cure Panel Broadcast on April 25 at 6PM EST.

Dr. Robert Z. Orlowski, MD, PhD is Director of Myeloma, and Professor of Medicine in the Departments of Lymphoma/Myeloma and Experimental Therapeutics, Division of Cancer Medicine, at The University of Texas M.D. Anderson Cancer Center in Houston, Texas. He is board-certified in internal medicine and medical oncology. Dr. Orlowski earned his doctoral degree in molecular biophysics and biochemistry from Yale University and his medical degree from the Yale University School of Medicine. Dr. Orlowski has published numerous book chapters, articles, and abstracts on cancer therapy, with a focus on the molecular pathogenesis of oncologic disease processes and the mechanisms of action of chemotherapeutics. His clinical research efforts focus on the translation of promising laboratory based findings into novel clinical trials for patients with hematologic malignancies. He has published in, and is a reviewer for, several journals,including Blood, Cancer Research, Journal of Clinical Oncology, and the New England Journal of Medicine. He has received several awards, including The Leukemia & Lymphoma Society Scholar in Clinical Research and the Jefferson-Pilot Fellowship in Academic Medicine.

M. D. Anderson is one of the most famous cancer centers in the world, and Dr. Orlowski is one of the worlds most renowned multiple myeloma specialists. I am sure he will be bringing back the latest news from the Kyoto meetings. Please join me and the rest of the Cure Talk Panel where patients will have an opportunity to ask Dr. Orlowski questions that they would like an expect to answer. You can still sign up for a the few remaining spots that are available if you CLICK HERE!

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Want to improve your Multiple Myeloma Prognosis? Just ask, "What would Mayo do?"

4/10/2013

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For the thousands of patients living all over the world who do not live near a myeloma center of excellence, who's insurance will not approve a center of excellence, or who cannot obtain or afford a second opinion. What do you do? How can you improve your life expectancy prognosis and survival rate. First , find a hematologist oncologist., and second tell him or her to just ask, " What would Mayo do?" Without the assistance of your own multiple myeloma expert, the next best thing would be to follow the cook book set up by some of the best myeloma specialists in the world. This cook book happens to be the mSmart Program published as a consensus view by the multiple myeloma experts from all three of the Mayo Clinics in the United States. Doctors like Dr. Rajkumar, Dr. Kumar, Dr. Chanan-Khan, Dr. Lacy, Dr. Fonseca and many more had a hand in putting this document together. It is designed to help patients to understand what care should be given to the myeoma patient and to provide doctors with a plan that will provide excellent care for their myeloma patients. Care that usually only a multiple myeloma expert can provide. Mayo is the only organization that I know of that has put together their standard of care into an understandable form, hoping to provide the doctor who does not have sufficient multiple myeloma experience with the tools to provide a level of care that will provide an above average life expectancy and survival rate. If a patient reads this information, they will have a better understanding of what to expect and what questions to ask their doctor.

I make this statement, because Mayo has some of the best 3 and 4 year survival rates in the world, has an excellent reputation, is a myeloma center of excellence, and has the MAYO MYSTIQUE. I have previously written this about the Mayo survival results.

Mayo Clinic, Rochester, MN - The Mayo Clinic Medical Edge Video from July 11, 2011 states that their 3 year survival has improved from 29% to close to 90%. When compared to the SEER rate of 55.6% you are at least 3* times more likely to survive under their treatment than at the average SEER facility. A recent analysis of 290 patients using LD or TD induction and delayed or early stem cell transplant reported equal 4 year survival of 82%* vs the SEER 4 year rate of 50%. Link: http://getmadcat.com/video/47064/ An outline of their risk adapted treatment program called mSmart can be found at the attached link: http://msmart.org/newly%20diagnosed%20myeloma.pdf

So what is this mSmart program. Two great links that will explain Mayo's multiple myeloma treatment philosophy are at:

http://www.mayoclinicproceedings.org/article/S0025-6196(13)00077-3/fulltext

http://www.msmart.org/msmart_mar09_002.htm

In a summary, for the newly diagnosed patient, they break the disease into three different disease classifications, High risk, intermediate risk, and low risk, and then provide treatment plans for each risk classification. They also break the treatments into transplant eligible and ineligible patients. This usually is age and health related (comorbidities).

Without question this is an option for those who can not be treated at or get a second opinion from centers like IMBCR, Medical College of Wisconsin, UAMS, Mayo, MD Anderson, Dana Farber, Moffitt, or many other great myeloma centers of excellence. It would be an excellent tool for those patients who do not have access to these centers of excellence, but still want treatment that will provide an above average life expectancy and survival rate. And for the hematologic oncologist that does not have much experience with this very rare disease and is mSmart enough to ask the question "What would Mayo do?"

Best Regards and may God Bless your Myeloma journey/ [email protected]

For more information on myeloma survival and treatment go to www.myelomasurvival.com.

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Want to improve your Multiple Myeloma Prognosis? Just ask, "What would Mayo do?"

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