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Does a Second Opinion from a Multiple Myeloma Specialist Improve your Life Expectancy Prognosis?? I Say YES, YES it does! What do you SAY?

9/6/2013

Could a Second Opinion Be Your Phoenix Rising Out of the Ashes?

Nick VanDyk (patient advocate) might have said it best when he replied to a Pat Killingsworth (myeloma author) blog post by saying: "Oh and by the way, every time you mention the need for a specialist I want to jump up and down in energetic agreement. The one constant throughout all our observations is that the local hem / onc, no matter how good their bedside manner or how smart they may be, doesn’t have the knowledge to treat this disease with optimum efficacy. People need to find somebody who really understands the disease and has treated hundreds if not thousands of cases." I nor most doctors could say this any better!

I want you to tell me your story in the comments below. I know of a few examples and I will present them, however there are so many more. And the myeloma patient community wants to hear your story and learn from your examples. I will discuss a few that I know of and provide an update on the three patients that Dr. Hari, Dr. Moreb, and Dr. Hofmeister had provided free second opinions for during the IMF's Multiple Myeloma Awareness Month last March. Again, I can not be more impressed with the generosity and humanity of these exceptional multiple myeloma specialists.

My Limited Evidence

One of my readers Stephanie wrote:
"My father was diagnosed with Multiple Myeloma in 1997. Their first doctor he consulted, an individual oncologist told my dad that his prognosis was grim. He recommended intensive chemotherapy and concluded that he had about six months to live. We are from Houston, TX, and this doctor warned my father from seeking care from M.D. Anderson. He told us that they would treat him terribly and subject him to horrible trials. Well, we decided to check out M.D. Anderson for ourselves. My father was a patient of Dr. Alexanian, the leading myeloma doctor in the U.S. (he retired last month at 84). I am happy to say that 16 years later, my dad is cancer free. Please, please, do your research. If my father would put his medical health in the care of that first physician, he would not be here today."

When I was being treated at UAMS, University of Arkansas for Medical Sciences in Little Rock, Arkansas, I ran into a number of patients whose local oncologists understood that Multiple Myeloma treatment was best left to a specialist and referred them to Little Rock. I had gone there because 7 years ago my daughter Andrea (editor on the health desk of the Wall Street Journal) did research for me and found that UAMS published a survival rate 7 years, and this we compared to the National Cancer Institute's rate at that time of 3 years. One patient I met there, a female born in Germany, but living in the US, had been told by her local hematologist that nothing more could be done. They researched and found UAMS. When she first came to UAMS her bone involvement was to the point that she could no longer walk, and she was pushed around in a wheel chair by her caregiver husband. Her first PET scan at UAMS showed she had over 100 lytic lesions. When I met her she was 2 years post transplant, was walking just fine, was in CR, and all of her lytic lesions had healed. If that was not a story of a Phoenix rising, nothing is.

If you follow this blog you might remember that last March was Multiple Myeloma Month and three doctors had been so generous as to provide a FREE second opinion to any patient throughout the world that may need assistance from a skilled multiple myeloma specialist. If you don't remember you can read about it in more detail if you CLICK HERE. It was my thought that these patients could benefit from a second opinion from one of these world renowned myeloma professionals. So now after five months, I have checked back with them to see how things were going.

The Patient from Kosovo

Kosovo, a new country in South East Europe which was a former part of the old country Yugoslavia - Arlinda had written that her 64 year old father was being treated in a health care system that had in her words many deficits. Dr. Moreb has worked with the medical information that was sent to him and noted that it was inadequate to determine if her father had myeloma, and that a number of additional tests would be required: Serum protein electrophoresis and immunofixation, urine protein electrophoresis and immunofixation, flow cytometry analysis on the bone marrow plasma cells to see if it is indeed clonal or polyclonal plasma cells or immunohistochemistry for CD138, skeletal survey to look for lytic lesions, Congo red stain on the kidney biopsy and immunohistochemistry for kappa and lambda light chain on the kidney biopsy as well. We have here the serum free light chain assay which is relatively new, may not have in Kosovo, and will also be extremely helpful. What is his blood albumin and LDH?

The family decided that they would move their father to a world class facility in Germany, have the tests conducted there and have them recommend a treatment plan. They then asked Dr. Moreb for his opinion on this course of treatment, and with a few tweaks he concurred with the myeloma specialists in Germany.

So what does Arlinda think about Dr. Moreb's contribution? She wrote, "I have thought of your response and the benefits of this program. I praise the initiative taken and value your contribution very much."

The Patient from Poland

Edyta wrote: My uncle Stanislaw has been diagnosed with multiple myeloma. He lives in the small village in south east corner of Poland (Rzeszow is the nearest town) where the medical care is really poor and especially in this part of Poland we do not have any good specialists who deal with this illness." Even with a local hospital, which was very slow in providing information, Dr. Hofmeister worked with Edyta and reviewed the data from them and provided this original review of the information, "This is not a lot of information. For all your hard work, you have communicated only two things to me:

The bone marrow biopsy showed 26% plasma cells (that's abnormal as it's greater than 5% and consistent with a diagnosis of smoldering or active myeloma); and
It looks like he is taking dexamethasone 40 mg a day for 4 days in a row, cyclophosphamide 500 mg weekly, and thalidomide 100 mg at night (in the U.S. and the U.K. this is abbreviated the CTD regimen). This is a reasonable treatment regimen.

Let me tell you a little about myeloma and ask some questions along the way to focus things." He then took the time to provide a well thought out and patient friendly explanation of myeloma, treatment options, and supportive issues and finished with the following recommendations: "Before we get to transplant, we need to kill most of the myeloma cells in his body if possible. There are many treatments available and currently no one right way to go. Most patients would start with Velcade (bortezomib, usually now given SQ) and Dexamethasone (decadron) (IV or by mouth) given twice weekly for 2 weeks on and one week off. Many myeloma physicians, as long as the patient is responding and feeling well, will attempt to augment this treatment by the addition of a 3rd drug, Revlimid (lenalidomide). Most physicians would treat patients for approximately 3 months and then move on to autologous transplant. After transplant, most physicians will give you "maintenance" therapy often starting 3 months after transplant using either Revlimid, Velcade, or both.

All this is in the U.S. where bortezomib and lenalidomide are easily available. For your uncle the combination of cyclophosphamide, thalidomide, and dexamethasone is clearly adequate. If he has access to autologous transplant, then moving on to that makes sense. If autologous transplant is not available or he is deemed not a candidate because of overall health, then I would consider the CTD therapy that he is on for 4-6 cycles (or months) and then transitioning to just thalidomide maintenance at 50-100 mg once daily at bedtime."

So even with the problems with slow response from the hospital and getting the data translated to English, Edyta continues to provide her uncle's information for Dr. Hofmeister's review and states: " I am so grateful that this case and my uncle was chosen!"

The Patient from Racine, Wisconsin

Nicholas is just 30 years old, works, continues to work, but has no health insurance, and Nicholas finished his request by asking me: "I don't want a death sentence at the age of 30. So can you please help save my life?" Once Dr. Hari heard of Nick's case he asked me if he could participate in the free second opinion program. He has been working with Nick ever since then, however, the issue remains that Nick has no insurance, and so he got his second opinion from one of the very best myeloma specialists in the world, but without insurance or another method of payment there is little that anyone can do for him. Without treatment, Nick's prognosis is dim, with a life expectancy of less than one year without any negative prognostic factors. Nick, however does have igD multiple myeloma which some consider high risk. So should he give up and welcome the grim reaper?

NO WAY! Nick is just too tough and in his own words "BLESSED". Nick does not give up easily. He has been looking to find a way to get financial assistance. He found a program available from the Aurora Health Care System. He has worked with them and will get 100% coverage for treatment including transplant. It does not cover prescription drugs, so it excludes Revlimid, Thalamid, or Krypolis. However, he is on CyborD, and this has knocked down, but not out, his tumor load. In addition, one of the doctors at Aurora happens to be Dr. Michael Thompson, and Dr. Thompson is a skilled multiple myeloma specialist. Dr. Thompson is now his doctor at Aurora. For someone who was dealt such a crappy hand, so far Nick truly has been BLESSED.

So does a second opinion from a MULTIPLE MYELOMA SPECIALIST provide improved life expectancy and survival rates? I think the evidence supports this hypothesis. If you would like to obtain a second opinion you can find a HOW TO blog post if you CLICK HERE. As always may God Bless your myeloma journey.

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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Want to Improve Multiple Myeloma Survival Rates and Life Expectancy? - SHOW ME THE MONEY!!! And the MMRF Does Just That.

8/31/2013

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The Cure Panel had the honor of having the Vice President of Marketing, Anne Quinn Young from The Multiple Myeloma Research Foundation or MMRF. Anne provided an excellent outline of the activities of the MMRF and how they have helped to prioritize research funding, and explained their role in new drug development. You can listen to Anne's excellent presentation if you CLICK HERE and then go to minute 58 in the presentation.

Why on earth has myeloma had such recent progress in life expectancy and survival? We would like to think that it is the efforts of the excellent myeloma specialists that have been diligently working to save our butts, and it is. But guess what, they can not do it without exceptional treatment tools. How do they get these great treatment tools? Research and clinical trials is the mechanism that has been used to develop these tools, and what do we need to accomplish these activities? Of course it is MONEY!!!! As my old boss used to tell me "YOU WILL GET WHAT YOU INCENT!" There are a few people who really understand this philosophy. I believe one person that really understands this concept is Kathy Giusti, the co-founder of the MMRF (Multiple Myeloma Research Foundation). Kathy, a graduate of Harvard Business School and a pharmaceutical executive, used her business acumen to establish a results based system to speed up the development of new drugs so desperately needed to extend patient lives and ultimately to find the cure. You can find a wealth of information at their web site http://www.themmrf.org/ You can donate there also.

So why did I use the phrase SHOW ME THE MONEY? Because that is exactly what the MMRF has done. They have raised over $225 million dollars in research funding! And if you look at any terminal cancer, you will find few have made the progress in just 10 short years that multiple myeloma has. We now have three novel drugs that have been approved as well as two new novel drugs for relapse and refractory myeloma, Krypolis, and Pomalyst. In addition, we have a full pipeline of new drugs that are currently under development. These things do not happen without the commitment and dedication of the multiple myeloma specialists, but they cannot do it without the proper tools and the money to develop those tools.

To get an idea of the impact of the MMRF's efforts you need only to look at the single largest funding agency, the National Cancer Institute. The National Cancer Institute in 2010 had $5.1 billion dollars to allocate for research and Myeloma got just over 1% of the total or $55 million. So the MMRF has now delivered over 4 times the annual amount of the largest funding agency, the federal government.

Lest I forget, it is the efforts of many individuals that contribute their time, resources and yes, money in small and large amounts that make up the $225 million. A few that I have knowledge of include:

- Eric Gelber - who is part of the MMRF Power Bike Team and they have collected over $50,000. and you can see his link if you CLICK HERE.

- Kendra Goffredo - Who has collected over $55,000 for the MMRF, and you can see Kendra's link if you CLICK HERE.

This is just a small sample of the thousands of individuals who provide the financial support to keep the new research and development on track. Thanks to all of your selfless efforts, and together we will SAVE LIFE/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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The Allogeneic Transplant in Multiple Myeloma - Dr. Ravi VIj provided a FAIR and BALANCED review of the Allogeneic Transplant in Myeloma Treatment.

8/25/2013

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The Cure Panel broadcast of August 21 is now available if you CLICK HERE! Dr. Ravi Vij, a skilled multiple myeloma expert from Washington University, was one of two featured speakers. Dr. Vij is Associate Professor of Department of Medicine,Oncology Division,Bone Marrow Transplantation & Leukemia Section. We also co-featured the Vice President of Marketing for the MMRF(Multiple Myeloma Research Foundation), and I will blog about that next week.

I had asked the question in a previous post about the role of the allo transplant in the treatment continuum for Multiple Myeloma. The Allo, (allogenic transplant), is probably one of the most misunderstood of the current arsenal of myeloma treatments. Basically, the difference in these transplant techniques is that the autologous stem cell transplant uses your own stem cells to repopulate your bone marrow once it has been destroyed by the use of high dose chemotherapy, and the allogeneic uses someone else's stem cells to replace your bone marrow.

There are also different kinds of allogeneic transplants. One is the related donor transplant, which the stem cells for transplant come from a relative or sibling, and the unrelated donor, which is exactly what it sounds like. The stem cells come from a non related donor. The rest of the significant information about the pros and cons of the allo and differences of treatment types, I will leave to the expert Dr. VIj.

So what were some of the key points that I learned from this Allogeneic broadcast?

1) Apparently the RIT(Reduced Intensity Allogeneic Transplant), has a first year mortality of 10 to 15% vs. 30 to 50% for the published data currently available. This is 2 to 5 times better than the published data, and would indicate to me that the very first thing you need to ask any allogeneic doctor is what is your ONE YEAR SURVIVAL RATE? He knows so, if he does not tell RUN LIKE HECK! Find one that has great experience and not one of the ones that make up the 30 to 50% morbidity group.

2) The myeloma allogeneic transplant has a much higher morbiity than it does in other blood cancers, and some doctors relate that to the older average age of the myeloma patient and their comorbidities. Younger patients may have much better outcomes with the allo than the average myeloma patient.

3) High Risk patients and those that have had a rapid relapse after first treatment may be more likely to benefit from new allogeneic clinical trials that are under developement.

And of course, in order to get an adequate match for a donor stem cell transplant, you first have to have donors. Robin Roberts of ABC News had found that there is a critical need for donors, and you can learn about the donor registry and become a donor if you CLICK HERE!

Hi, I need a donor!
Would you be Mine?

The Allogeneic Stem Cell Transplant - Pros and Cons

Dr. Vij started with stating that this topic is still a very relevant for discussion of the myeloma treatments. The allogeneic transplant, which includes not only obtaining stem cells for replacement after high dose chemotherapy from a sibling or unrelated donor, has been under investigation for going on 2 to 3 decades. It has never become mainstream for myleoma treatment and left to the realm of clinical trials. The allogeneic transplant sources have expanded to include alternative donor transplant sources, which includes cord blood and haploidentical donor. A haploidentical, or half matched related donor, could be a sister, brother, mother, or father.

The use of the RIT ( Reduced Intensity Transplant) has taken off in the last decade and a half, and uses the donor's immune system to fight the cancer in the myeloma patient instead of relying on chemotherapy exclusively. This has resulted in significant reduction in morbidity and mortality in allo stem cell transplantation. It now has improved to the point it can be used in older patients in their late 60's to early 70's. However, despite these advances the allo stem cell transplant in multiple myeloma is more the exception than the rule. This is because of the contradictory results obtained from clinical trials. Clinical trials have been being conducted for over 2 decades and originally involved what we call fully myeloablative stem cell transplants. This is where we relied on the chemotherapy and radiation administered to the patient prior to the transplant to eradicate the disease quickly, and the stem cell source's main function was to provide fresh bone marrow to allow blood cell production. That experience provided a 10 to 20% disease free survival suggesting that this set of patients is cured of their disease. The issue at that time was the upfront mortality that was between 30 and 50% in the first 6 months after transplant. It was felt after several trails that although the allo had curative potential, it in fact harmed more people than it helped. Those people who died may have had a long term disease free control, and some perhaps extended control if they had been treated with conventional treatment or with an autologous transplant.

What contributed to this high initial mortality for the myeloma patient is still not clear, and mortality is much greater than that for other disease states. This has been contributed by some people to organ impairment ( like the kidney) ,comorbidity, frailty, and the advanced age of the myeloma population and these factors may have put the myeloma patient at a higher risk of complication. At that time a clinical trial that was being conducted, comparing the allogeneic transplant to the auologous transplant was terminated early because it was felt to be unethical to even conduct the trial given the high mortality that ensued with the allogeneic stem cell transplant.

More recently in the last 10 to 15 years, we have really started to do the reduced intensity transplants (RIT), and this has really brought down the up front toxicity of this procedure. Instead of the 30 to 50% mortality, we are now down to perhaps 10% at 6 months post transplant, and 10 to 15% at 1 year from transplant. With the RIT (Reduced Intensity Transplant) , it relies more on the donor's graft to provide the anti myeloma activity, The immune cells in the donor graft attacks the cancer in the recipient. and relies less on the chemotherapy and radiation that was given to the patient prior to transplant to control the disease. By reducing the chemotherapy and radiation at the outset we are able to reduce the toxicity of the procedure, The issue therein is that the graft vs. tumor response or the immune effects of the donor graft is slower in developing. It often takes weeks to months to exert its full impact. So if we have a disease that is progressing at a rapid rate at the time of transplant, or have a very active disease at the time of transplant, it will often require faster disease control than that offered by the RIT. So even now some patients will have a fully myloablative transplant if the disease burden is high at the time of allogeneic transplant.

However, one other strategy that has evolved is the tandem transplant where the first transplant is autologous, and then followed in three to six months by a second allogeneic transplant (preferably sibling matched). What we have is rapid disease control from the autologous transplant along with the potential curative characteristics of the allogeneic transplant. We have been able to accomplish this treatment regimen without excessive morbidity and mortality, but we have not been able to conclusively show that this is better than a single autologous or dual autologous transplant. There have been numerous studies in this regard, perhaps a half a dozen large randomized trials. Two of these trials showed that the tandem autologous transplant had an OS (overall survival) advantage and possibly some patients are being cured of their myeloma. The problem is that for most studies the followup is short. Four of the studies also show no survival advantage of the autologous/allogeneic over the tandem autologous transplant. The critics of this assertion who favor allogeneic transplants point out that the these 4 studies are the shortest in duration and that more time is required to show a survival advantage for the auto/allo. This may in fact be true, because it has been noted in the past that a survival advantage may emerge with long followup. So Dr. Vij believes we still do need longer term followup of the allogeneic studies which have been conducted in the era of RIT(Reduced Intensity Transplant).

However, we must look at what other treatment options we have for myeloma patients, and in this case we have seen a plethora of options which have emerged over that last 10 plus years. Autologous transplant, not often offered as a curative therapy, however is meant to be a life extending therapy. The data from two large groups of patients, one in the United States and one in Europe, with long term follow up suggests that up to 30% of patients that obtain a complete remission(CR) after an autologous transplant are alive and disease free for 12 plus years from transplant. Now we are having more and more patients who achieve complete remission, and complete remission after autologous transplant is not in the 50 to 60% range. So now if we have 30% of those patients alive and disease free 12 plus years out we will have many more patients living long term with just autologous transplants. The auto is a much safer procedure, which in the best of hands has only a 1 to 2% mortality rate. We are making great progress with the newer drugs being incorporated into the autologous transplant paradigm which will let more people be disease free 10 to 15 years out. Do we think that these people are cured? We hope that they are, having been disease free that far out, however we still will not find many myeloma specialists who will talk about the autologous transplant as being curative.

As said, our armamentarium of drugs is expanding, and even with the transplant ineligible patients, we are seeing better results. Within the last year we have had two new drugs approved, Carfilzomib and Pomaldomide, added to Bortezomib, Revlimid, and Thalidomide which were approved in the first decade in this millennium. We certainly have made major strides. Now we have antibodies that are in development that seem to be very promising, which include Elotuzomab and Daratumumab and other CD38 antigen directed antibodies, with some people now feeling that the best is yet to come. Some people are conflicted with whether we should be subjecting patients to a high risk procedure with curative potential, rather than going with our increasingly more effective chemotherapy drugs.

This Allogeneic transplant is left to be in more of the realm of investigation. There are moves afoot to do large Allogeneic transplant studies. The two groups of patients where this is thought to be worth investigating further are those that have high risk chromosomal abnormalities, where using it as an upfront procedure would be appropriate, or with people who have had early relapse after either transplant or conventional therapy. Dr. Vij believes that the Allogeneic transplant will continue to be an area of active research, and in the future may become applicable to more patients, however right now caution is advised.

We often have different Allogeneic approaches at different centers. Dr. Vij is often asked whether he would conduct an allo on a younger patient. He explained to us that we physicians all, in such patients, have a discussion about the treatment options. They sometimes see patients in their 20's, but not often, but in those cases he thinks doctors ,and especially transplant doctors, are willing to explore the use of the allogeneic transplant outside the context of the clinical trial. He also said that different physicians have varying comfort levels of conducting the allogeneic transplant outside the clinical trial format.

Dr. Vij then asked to go into the Q & A section of the program. If you want to listen to his excellent conversation of the Pros and Cons with the Cure Panel and the listeners, it begins at the 20 min. and 15 second time of his presentation. You can again go to this presentation if you CLICK HERE. The Q & A session included some unique incites into the Graft vs Host disease, more in depth explanation of the mini allo (RIT), and an expanded explanation of the reason morbidity in myeloma is greater than in MDS or leukemia.

I would like to thank Dr.Ravi Vij, Priya and the Cure Talk Crew, the Myeloma Panel members and our listeners for another great educational experience for the myeloma patient community. And 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

P.S. - After the broadcast Dr. Robert Orlowski of M.D. Anderson was kind enough to send the following tweet: About use of allo in high risk patients. MD Anderson data: same factors that predict for early relapse post-auto apply to allo. He included the attached article from Blood that provided a M.D. Anderson study showing the benefit of the RIP over the full allo in relapsed and refractory patients. To view this excellent article CLICK HERE. Thank you Dr. Orlowski for your confirming data, and your obvious commitment to the myeloma patient community.

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Beat the Multiple Myeloma Life Expectancy Prognosis - How to Educate Yourself by Jenny Ahlstrom and Gary Petersen

8/18/2013

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We have talked about the two most important things that a patient needs to do to improve their survival prognosis, 1) having a multiple myeloma specialist on their team and 2) obtaining an education about multiple myeloma and becoming your own best advocate. This web site has spent most of its efforts on providing the myeloma patient community with survival information and a listing of national and international multiple myeloma professionals. However, we will now attempt to put together a comprehensive summary of how to find the best resources to obtain your multiple myeloma education. We will be breaking this into two parts, the first of which will focus on helpful web sites and information that provided the best myeloma educational opportunities, and then a section that will cover all the places where you can either listen to or read presentations from some of the world's most remarkable multiple myeloma professionals.

Your General Multiple Myeloma Education

When you first are diagnosed it is a very scary time in your life. If you go to the Internet you can find an OVERWHELMING amount of information, much of which is outdated with quotes of 3 to 5 years for survival. However there are a few of the best sources that the people before you have found to be very helpful.

Newly Diagnosed

When newly diagnosed, one of the very best places to find out about Myeloma is the IMF(International Myeloma Foundation) web site www.myeloma.org. This site will provide you with the basic information of what is multiple myeloma, treatments, and a very helpful hot line where you can talk to a well informed myeloma consultant.

The American Cancer Society has a web link that you may also find very helpful at:
http://www.cancer.org/cancer/multiplemyeloma/

The web site MyelomaSurvival.com at the link www.myelomasurvival.com will help you to find a multiple myeloma specialist for your team and provides some great survival data and a listing of some the world's best specialists.

Another great site is the MMRF(Multiple Myeloma Research Foundation) at the link: http://www.themmrf.org/

After the Initial Diagnosis

Once you have had some time to digest your initial diagnosis, you will want to expand your knowledge of not only what is multiple myeloma and their treatments but also to plug yourself into the "Multiple Myeloma Information Network". This is an informal network of web sites, myeloma activists and advocates who help to provide an Information Network that helps to disseminate the most up to date myeloma information.

The IMF web site is again a major resource, and you will find a listing of support groups thoughout the country that I believe are essential to improve your myeloma education, as well as provide support, encouragement, and friendship. The link to the list of support groups can be found if you CLICK HERE!

The web site Living With Multiple Myeloma, put together by Pat Killingsworth, advocate and myeloma author, keeps up to date with all of the current myeloma news and is at the link: http://multiplemyelomablog.com/. In addition, Pat has an on line support group every month that he will announce on his site. If a support group is not available in your area you can participate on line. You can email Cure Talk at [email protected] to request to be included monthly on her member list.

The LLS or Leukemia, Lymphoma, and Myeloma Society has a myeloma support group meeting that is a messenger type of meeting that you can join if you call in for their Tuesday support group meeting. You can sign up if you CLICK HERE!

ACOR Myeloma Listserv is an on line patient to patient support program that you can sign up for if you CLICK HERE. Mike Katz, a 20 year survivor, coordinates this excellent patient centric program.

Cure Talk is a web site that has content from myeloma professionals, other bloggers, clinical trial information, and has a lot of great information for the multiple myeloma patient community. You can link to their site if you CLICK HERE or go to http://trialx.com/curetalk/

The Myeloma Beacon is a site similar to Living With Multiple Myeloma and has a forum that provides patient to patient contact with a chat room feel. The Home page offers myeloma news and articles from some very knowledgeable patients. Link: http://www.myelomabeacon.com/forum/

There are so many sites, however that provide you with so much information that your head may never stop spinning. Here we try to whittle it down to a high quality and manageable level. I am now pleased to hand this blog post over to the founder of the web site mPatient, Jenny Ahlstrom.

How to Connect with the world's best Multiple Myeloma Specialists?

There are many ways that patients can connect directly with myeloma specialists. There are excellent patient seminars, webcast updates from ASH and ASCO and outstanding myeloma webcasts on particular topics. I've noticed that almost 90% of the time, whenever patients connect with myeloma doctors we have questions for the doctors that relate to our personal situation. Sometimes we want a second opinion, sometimes we are looking for clarification about our stage of myeloma, our symptoms, side effects or our disease stage. All of the time, we are looking for personally relevant information. More on this later, but first, here is a list of the great resources that are available today, directly from multiple myeloma specialists.

The International Myeloma Foundation web site (www.myeloma.org): The IMF has done an excellent job capturing information directly from myeloma specialists. On their web site under "webcasts" you can find several types of webcasts:There are patient questions answered by Dr. Durie, videos of past IMF patient seminars, videos from past medical meetings like ASH and ASCO as well as international conferences, videos from the International Myeloma Working Group (a group of over 180 myeloma specialists), videos from a nursing board (the Nurse Leadership Board) on myeloma topics, and videos of other myeloma-related topics.

The Cure Panel Talk Show (www.blogtalkradio.com/curepanel): These are monthly interviews hosted by myeloma patient Gary Petersen and others (Jack Aiello, Pat Killingsworth, Nick and Cynthia). The Cure Panel Talk Show interviews top myeloma specialists to find out what is happening in research, like understanding highlights from myeloma conferences or a new therapy. The show also covers related topics like legal or financial issues that patients might face. The Cure Panel Talk Show is hosted by Trialx (www.trialx.com)

The Myeloma Daily (http://paper.li/Myeloma_Doc/1310386431): This is a daily online newspaper with Dr. Robert A. Orlowski as editor. He pulls important study information and myeloma discovery information together and also covers relevant happenings in myeloma. You can subscribe at the above link.

Managing Myeloma (www.managingmyeloma.com): This is a web site that contains videos directly from experts. One of the most helpful links on this site for patients is the Expert Interviews link (http://www.managingmyeloma.com/knowledge-center/expert-interviews). Here you can watch videos directly from myeloma specialists on the latest topics in myeloma. This site is provided by MediCom Worldwide.

mPatient Myeloma Radio (www.mpatient.org): This is a new weekly internet radio show created by myeloma patient Jenny Ahlstrom who believes that we can drive discoveries faster if more of us participate in clinical trials. Because only 3-4% of myeloma patients join trials today, the pace of research is not where it could be if 10% or even 50% of us joined. In myeloma, today's treatments are yesterday's trials. In myeloma trials, patients are either getting the "standard of care" or something that is potentially better. She believes we can find a cure and that we are not helpless in our fight against myeloma. Doctors may be driving the direction of the research, but patients determine how fast they can run. You can subscribe to alerts about upcoming shows and posts from past shows by email at this link: http://feedburner.google.com/fb/a/mailverify?uri=Mpatient&loc=en_US"

The Leukemia and Lymphoma Society (www.lls.org): The LLS provides patient support and gathers information from the experts at this link: http://www.lls.org/#/resourcecenter/pastprograms/myeloma/. These are mostly written papers that come from myeloma specialists on a particular topic like a new treatment.

Where do we go from here?
Our future hurdle as a myeloma community is to take this amazing information and simplify it in a way that is personally relevant to each patient. The information can get overwhelming and we may not be at our mental best while on many of the common myeloma medications. When we can sort through this information to find the most relevant information for our kind of myeloma, we are ever closer to finding a cure.

We hope that you find this helpful in your quest to become myeloma literate, and to become your own best advocate. Good luck and may God Bless your myeloma journey/ coauthors Jenny Ahlstrom & 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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Multiple Myeloma Life Expectancy - The Allo, Is it a Cure or just a very Risky Treatment of Last Resort

8/14/2013

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***You can listen to a comprehensive Cure Panel discussion of the Pros and Cons of the Allogenic Stem Cell Transplant presented by Dr. Ravi Vij of the Washington University. You can listen if you just CLICK HERE.***

The Allogenic stem cell transplant (the use of someone else's stem cells, a donor) has been one of the most debated treatment options that confronts the myeloma patient community. It is used more extensively in other cancers like leukemia, and lymphoma, and has not been a staple of care for myeloma. Some people feel it is the only possible way of achieving a Cure, however with the success of new novel therapies and use in conjunction with the autologous stem cell transplant (the use of your own stem cells) others feel the allo is just too risky unless you have exhausted all other options.

The majority of myeloma specialists do not feel the use of the allo is appropriate as a first line therapy, and I believe it has to do with the history of TRM(transplant related mortality). If you look at the following graph it will show you the history of mortality each year after transplant for the period between the years 2000 and 2010. This graph is from the CIMBTR which is a group of 500 transplant hospitals. You can find a slide presentation from the CIMBTR of everything that you ever wanted to know about transplant statistics if you just CLICK HERE.

If you look at this information the auto has always provided a survival advantage over the allo for at least the first 6 years. The first year mortality is 5% for the auto, 30% for the allo(sibling donor) and 50% for the allo(unrelated donor) I know of several people who have had allos, and find that at least those I know seem to be doing quite well. Some have had it as a primary therapy, and others who have had it as a last resort therapy. Because I know them, I must conclude they are either the lucky ones who have survived or they have found a safer allo than that represented in these graphs.

I have heard anecdotal information from two people in my support group that Moffitt in Tampa uses Velcade post transplant as part of there protocol and this has reduced the mortality to acceptable levels, however I have not seen any numbers that support this. The Velcade helps to reduce the impact of GVH (Graft vs Host disease) to acceptable levels. I can see how the use of the sibling donor transplant and that of an unrelated donor would become far more widely used if the one year mortality was closer to 10% than to that of 30 to 50% noted in the historic numbers.
I know I am looking forward to finding out more about the allo, and getting some input and great questions from the Jack, Mark, and Arnie's of the post allo myeloma patient community.

Good luck 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 - There is a New Kid in Town (mPatient's Jenny Ahistron) That is Out to Improve Myeloma Life Expectancy by Educating the Myeloma Patient Community!

8/11/2013

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It is often said that when you become a multiple myeloma patient you join a club that you wished you never belonged to, and then you find you are with some of the nicest and most caring people on the planet. But it is these same people who have helped to move the life expectancy from just 9 months to over 10 years with a skilled myeloma professional. Who are these people? Of course the fine multiple myeloma professionals like Dr. Kyle, Dr. Barlogie, Dr. Berenson, Dr. Rajkumar, Dr. Durie and many others, but there is also a subset of people who have multiple myeloma who have made remarkable contributions.

Susie Novis is the President of the International Myeloma Foundation and started the IMF because her husband had MM. Pat Killingsworth, author and patient advocate and MM survivor, is a spokesman for Myeloma Patient Community. Kathy Giusti is the co founder of the Multiple Myeloma Research Foundation and has collected more than $195 million for research to improve survival and find the cure. And there are many more who serve the myeloma patient community every day.

I am also of the firm belief that being your own best advocate and educating yourself about this rare disease is one of the most important things you can do to insure a long life expectancy prognosis. Your education can take many avenues, and one of the best ways is to talk to the best multiple myeloma professionals in the world to obtain their views on the best treatments and care. This has been done very successfully by Cure Talk, who has provided a series called the Myeloma Cure Panel. You can find a list of all the Cure Panel programs at the link http://www.blogtalkradio.com/curepanel Other Doctor interviews can be found at the IMF and Patient Power.

Recently, I was contacted by a myeloma patient by the name of Jenny Ahistron, who was diagnosed with MM and wanted to help to expand the scope of my work with survival rates. In addition, she started a web site called mPatient.org, and wanted to interview and broadcast weekly a program focusing on myeloma treatment and research from multiple myeloma specialists. I had frankly thought that once a week was overly aggressive, but to my surprise she has been keeping up with this blinding schedule and put together some really great content. You can see her web site and listen to all of the broadcasts to date, and she has also provided a print copy of the broadcast if you would rather have some bedtime reading.

The broadcasts have so far included Dr. Robert Z. Orlowski, MD, PhD, M.D. Anderson Cancer Center, Dr. Guido Tricot, MD, PhD, Holden Cancer Center, University of Iowa, Dr. Don Benson, MD, PhD, The James Comprehensive Cancer Center, Ohio State University, Dr. C. Ola Landgren, MD, PhD, The National Cancer Institute, and Dr. Robert A. Kyle, MD, Mayo Clinic. You can listen to the rebroadcast of these excellent interviews at http://www.mpatient.org/

Jenny is quite impressive for three reasons. First because she is so passionate about providing helpful information to the myeloma patient community, she is also an exceptional interviewer, and she has been able to recruit an excellent schedule of myeloma professionals. I am so impressed with her work I have asked her to co-author a blog post on the best resources and ways to obtain the information we all need to obtain the best multiple myeloma life expectancy prognosis. This article will be published within the next two weeks.

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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Multiple Myeloma Survival in India by Priya Menon and Gary Petersen

7/29/2013

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India has 1.24 billion people, or a population that is nearly 4 times greater than the USA. The USA has nearly 22,000 newly diagnosed patients with multiple myeloma, and the best information I could find is that each year 16,000 are newly diagnosed in India. This would indicate that the incidence rate in India is much lower than that in the US. I have not found a good explanation for this significant difference. Difference in diet, life expectancy, rural vs. urban population, industrialization, use of chemicals and pesticides, under-reporting, genetics, all could have an impact; however it would be great to know why people from India are 5 to 6 times less likely to be diagnosed with multiple myeloma.

Priya lives in India and provided the following outline of how their health care system provides services to myeloma patients in India:

Even though India is the largest generic medicine exporter, healthcare policies of India fall short of saving the needy. Recent years have seen some progress with regard to publicly funded care in India, but this is in its nascent stages. This could be the reason why spending for health is one of the leading causes of poverty in India with over 63 million individuals pushed to shell out their last earnings by healthcare expenditures. India’s urbane population has gradually begun to opt for health insurance which until now had existed only as part of basic life insurance policies or as part of overall benefit package of employees.

In order to understand the scope of myeloma treatment in India, I had connected up with a few hospitals and oncologists here. What I came to understand is that treatments offered for myeloma is good but there are drugs that are not yet available here and tests like FISH that are not available at all treatment centers. However, clinical trials are not very common and participation is less. Moreover, the money involved, from an Indian perspective, continue to be very high. You can read one of the conversations I had with Dr. Lalit Kumar from All India Institute of Medical Science (AIIMS) which is funded by the central government. Dr. Kumar provides an overview of myeloma treatment in India and the costs involved.

Quoting Dr. Kumar:

In a government hospital like AIIMS, (funding by central govt) the cost of transplant comes to less than 3 lacs rupees (approx. 6000 US $). Private hospital charges approx. 8 lacs (approx. 16000 US $). Thalidomide would cost 3000 INR per month; Lenalidomide is about 15000 INR per month and bortezomib 20,000 INR per month. Zoledronic acid (injections) costs about 1500 INR per month.

So, for a person on Lenalidomide + dexa and Zoledronic acid cost would come about 20,000.00 INR (approx. 370 US $) per month.

CLICK HERE to read Dr. Lalit Kumar’s interview. (http://trialx.com/curetalk/2013/03/myeloma-in-india-curetalk-in-conversation-with-dr-lalit-kumar-professor-of-medical-oncology-all-india-institute-of-medical-sciences-aiims-delhi-india/)

Given below is a list of hospitals which offer some of the best treatments for myeloma patients in India:

-       Post Graduate Institute of Medical Research, Chandigarh

- AII India Institute of Medical Sciences, New Delhi

-       Tata Memorial, Mumbai

-       CMC, Vellore

-       Manipal Hospital, Mangalore

-       Tata Medical Center, Kolkata

-       Apollo Hospital, Chennai

And for transplants, you can find a list of CIMBCR approved centers in India at the link: http://www.cibmtr.org/About/WhoWeAre/Centers/Pages/index.aspx?country=India

So it would seem that if you can get into a state subsidized hospital you can get the standard of care for low risk multiple myeloma of Rd, transplant, and one year of Rd maintenance for approximately $10,400 US. However the average family in India earns just $6100/year, and this is usually without insurance and in a pay for service system. This is care at a state subsided facility, and the cost in the private sector is greater.   For a US citizen to understand what this would mean, it would be equivalent to spending $86,000 of your own money out of pocket. However the true cost in the USA for a US citizen without insurance would be much closer to $500,000. So even though the cost of care is far less in India, it is just as painful financially to the average citizen of India.

For all of the international myeloma patients, we hope that the last few posts have provided some help with your myeloma journey. We will continue to look for ideas that will benefit all of the multiple myeloma patient population.

By Priya Menon and 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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Multiple Myeloma Life Expectancy Prognosis - Is Where You Live a Key Factor in Survival? by Gary Petersen, Pat Killingsworth, and Priya Menon

7/24/2013

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Recently, I got an email from a woman in Jamaica who was beside herself because their health care system is fee- for- service. Her mom had spent her life in public service and retired with a pension, but no health insurance Her mother has multiple myeloma and she has exhausted her pension, savings, and the entire families' available resources. To quote Lisa, "We are flat broke, and she(her mom) needs more help and we can not afford further treatment." Her treatment had included Thalidomide, and recently, just 8 infusions of Velcade before her funds were exhausted. Her oncologist had told her mother that there was nothing more that she could do for her mother. So if you are not rich you can not afford the drugs that we know are critical to myeloma treatment, or you have to take drugs that we know are not as effective as the new more expensive novel drugs. This is not just a problem in Jamaica, but in many countries throughout the world. The following is the email that I had received!

Hi Gary, I have read your blog and have been following closely. My mother has MM and the family fear for her as she is now not responding to treatments. Please provide me with your telephone number and or email address as I would like to ask you some questions. Please help Gary, you are so knowledgeable, I'm depending on you. Lisa

I live in the United States, and like many people always can find fault in our system of health care. However some 85% of the population has heath care from private insurance and those over 65 years of age are covered by Medicare. But we still have holes in the system and the US health system is still not considered to have Universal Health Care. The holes in our system are sometimes filled by the programs like the Chronic Disease Fund, Medicaid, and Co Pay
assistance programs. And as the ACA (Affordable Care Act) is implemented, the majority of the uninsured and underserved in the USA should have coverage. In the EU countries, Canada, and Japan there is national health care,and it covers much of the cost of Myeloma Care. This group of countries numbers 31 of the total of 196 countries in the world. What I have found from my work on this web site is that some countries do not have employer provided insurance or a national health care system, so what do they do? They often die too soon! We know that without care the average life expectancy of a myeloma patient is less than one year. The following is a map published in The Atlantic magazine which shows the countries in green that are considered to have national health care.

Map of the Countries That Provide Universal Health Care

After we talked, she asked if she could get her mother to relatives in Jacksonville, Florida, would she be able to be treated in the US, and was there any financial assistance available for international myeloma patients. I did the only thing that I could to see if I could help her. I emailed some doctors in Florida and Georgia who might know if clinical trials or aid is available, and I emailed some of the most knowledgeable people in the myeloma patient and care provider community. I emailed Dr. Asher Channan Kahn and Dr. Vivek Roy of Mayo Clinic Jacksonville, Author Pat Kiliingsworth, and Priya Menon of Cure Talk for ideas that might be helpful. As I had hoped they all have been generous with their help and assistance. I am often amazed by how selfless and caring many of the multiple myeloma doctors really are, and Dr. Asher Channan-Kahn and Dr. Vivek Roy of Mayo Jacksonville are on the top of my list.

Dr. Asher Channan-Kahn wrote:

Happy to help
Depends on her state and the need for therapy as well as prior therapies
Asher Chanan-Khan

Dr. Vivek Roy wrote:

Happy to help. Will depend on the specifics - clinical situation, previous treatments etc
VR

Pat Killingsworth has written a book on financial aid and he provided the following information on care for people who are uninsured and in a fee for service health care environment.

Possible financial aid for myeloma patients worldwide

Recently my good friend, myeloma survivor Gary Petersen, asked me if I could help one of his international readers. My fourth book, Financial Aid for Myeloma Patients and Caregivers, was published earlier this year. But I focused on things that might help the myeloma patient community here in the United States, not in the Carribbean Islands or overseas. Even so, I told Gary I was happy to see what I could do.

Lisa lives in Jamaica and her mother has had multiple myeloma for 5 years. She has used Thalomid and taken some Velcade, but has exhausted her funds. Her doctor says she is now refractory to Thalomid , and there is nothing more that she can do for her. Lisa has a half-sister who lives in Florida, so Gary wondered if she might be eligible for a clinical trial here in the U.S.

And apparently, that’s a possibility. So is contacting the individual drug companies to see if they can help. I called Millennium Pharmaceutical’s VRAP (Velcade Reimbursement Assistance Program) and Celgene (Thalomid and Revlimid) Patient Support and both gave me the same answer. Depending on the circumstances there may be help available.

Which got me thinking; there must be patients that need assistance paying for myeloma meds most everywhere. What can they do to get help?

I soon discovered this was much too big a topic to try and cover here. But investigating the three leads I found for Lisa’s mom might work for others from different parts of the globe, too. Which reminds me; I should probably pass-along the specifics.

VRAP (866-835-2233) and Celgene’s Medical Info Line (888-771-0141) both have toll-free numbers. I’m not sure if they will work in every country. If not, Google them and dig around for a regular phone number. I couldn’t find one, but I didn’t look very hard.

Gary’s clinical trial idea was a great one. Apparently international patients are eligible to participate in trials here in the U.S. And sometimes the trials even offset some travel expenses—at least while they are in the States.

Gary and Cure Talk’s Pryia Menon will be sharing more about how international patients may be able to take advantage of all that clinical trials offered. It sounds like a lot of work, but remember that the patient’s health—and thousands of dollars in savings—is at stake.

Clinical Trials for International Patients

Priya Menon from Cure Talk provided me with the following information about clinical trials available to international myeloma patients.

From what I have been reading, international patients can take part in clinical trials in the US. The only thing the NIH insists on is that patients have to bear cost of travel and other expenses while on the trial.
Even though, preference is given to patients who are US citizens and permanent residents of the USA, international patients are also considered depending on them satisfying eligibility criteria for the trials.

Quoting from the NIH website (http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-center)

1. Can cancer patients who live outside the United States participate in clinical trials at the NIH Clinical Center?

Yes. People from other countries can participate in clinical trials at the NIH Clinical Center if they meet the trial’s specific medical eligibility requirements. Due to limitations on resources and funding, however, U.S. citizens and lawful permanent residents have priority for participation in these trials. International patients planning to travel to the United States for cancer treatment should contact the U.S. Embassy or Consulate in their home country for visa eligibility and application procedures. Participants must pay for their own travel to the United States, and they must have a place to stay while they are in the United States.

However, the National Institutes of Health in Bethesda, MD (adults and children), and for children, at St. Jude Children's Research Hospital, in Memphis, TN have no citizenship or residency requirements for qualifying research subjects.

The article here, http://ramoslink.info/TreatcancerUSA.html proves quite useful. Priya also provided links to two web sites that will help you find a Myeloma clinical trials. Those links are https://myeloma.trialx.com/ask/ and http://trialx.com/widget/

So where will Lisa and her mom go from here? The Doctor in Jamaica has forward Lisa's mother's history to Mayo Clinic, Jacksonville. Lisa's mothers renal function must be clarified because renal function often is a factor that disqualifies patients from currently available clinical trials. I have forwarded Pat's findings to Linda, and hope that they will be able to get assistance from one of the drug companies. Within the next month they plan to travel to Jacksonville where Lisa has a half sister to continue their search for options to save her mother. What started out with a request from a myeloma patient in need in Jamaica may just have become a larger investigation on how we can SAVE LIFE for the uninsured and underserved international myeloma patient community.

Authored by Gary Petersen, Pat Killingsworth and Priya Menon

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 Findings from ASCO 2013 by Dr. Shaji Kumar of Mayo Clinic - Improve Your Life Expectancy Prognosis by Being Your Own Best Advocate

7/20/2013

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***Now that this broadcast has aired you can listen to the rebroadcast if you CLICK HERE***
Join us at the July 25th Myeloma Cure Panel Broadcast. As we have stated on this web site, becoming your own best advocate through self education is one of the key factors in providing the best multiple myeloma life expectancy prognosis. One way is to sign up and listen to the Myeloma Cure Panel broadcasts. The next one will be on July 25th, at 7:00pm EST. Dr. Shaji Kumar of Mayo Clinic will be providing his outlook on the key developments in multiple myeloma treatments and research from the 2013 meeting of ASCO (American Society of Clinical Oncology). Dr. Kumar is part of the exceptional team of doctors at the Mayo Clinic system of hospitals who deal mainly with multiple myeloma patients, and have developed a superior survival rate and life expectancy prognosis for their patients. They report a 3 year survival rate of 90%. Which means that their patients are three times more likely to survive 3 years than the average myeloma patient as reported by the National Cancer Institute.

The Cure Panel Talk Show on 25 July, 2013 @ 7pm EST

The Cure Panel Talk Show is excited to host myeloma expert Dr. Shaji K. Kumar of Mayo Clinic, Rochester on Thursday, 25 July @ 7pm ET.

Dr. Shaji K Kumar is Associate Professor of Medicine at the Mayo Clinic College of Medicine and a consultant, Mayo Clinic Division of Hematology.

Dr. Kumar is board certified in medical oncology and hematology. He is a member of the American Society of Hematology, American Society of Clinical Oncology, American Association of Clinical Research, American Society of Blood and Marrow Transplantation, American Medical Association, Association of Physicians of India, and the European Hematology Association. His laboratory focuses on development of novel drugs for treatment of myeloma and he has been published in numerous peer-reviewed journals including British Journal of Haematology, Blood, American Journal of Hematology, and Bone Marrow Transplant on this topic.

You can see more about this myeloma cure panel if you CLICK HERE, and you can sign up for the broadcast if you CLICK HERE. I look forward to hearing your questions on the broadcast. The Cure Panel broadcasts have now been viewed over 100,000 times, and the last one on Nano Technology in Cancer Treatment was viewed over 30,000 times.

To all patients and caregivers, 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 - Please remember to LIVE!

7/11/2013

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Sorry friends for the absence, but I have been entirely too busy living, and have not been thinking much about Multiple Myeloma or this web site. This has raised a question in my mind that maybe we all need to remember to just LIVE our lives and somehow leave Multiple Myeloma in the back of our minds, if at all possible. This is so easy to say but much harder to do. We recently moved to Atantic Beach, Florida and rented a place near the beach. We bike to the down town area all of the time, walk on the beach, and because we live near the beach, have been blessed with a lot of family visiting us at the beach. In the last two weeks we have had my daughter Andrea, son-in-law Sean Patrick and my adorable granddaughter Fiona, and last week we had my wife's sister Gale, her husband The Donald, and her daughter Olivia, and her new baby Izak. We had a great time, and I have found that spending time with people we truely LOVE provides such a positive experience as well as the very best memories that you can possibly have to cherish.

I will post a few of the pictures from these times as a reminder to all people with multiple myeloma that it is important to LIVE your life as best you can with those that you REALLY love. You may not have that much time to do it, so the time you have is so very important. I feel really blessed to still be able to be with those that I love.

Best Regards and may God Bless your myeloma journy/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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Does a Second Opinion from a Multiple Myeloma Specialist Improve your Life Expectancy Prognosis?? I Say YES, YES it does! What do you SAY?

Want to Improve Multiple Myeloma Survival Rates and Life Expectancy? - SHOW ME THE MONEY!!! And the MMRF Does Just That.

The Allogeneic Transplant in Multiple Myeloma - Dr. Ravi VIj provided a FAIR and BALANCED review of the Allogeneic Transplant in Myeloma Treatment.

Beat the Multiple Myeloma Life Expectancy Prognosis - How to Educate Yourself by Jenny Ahlstrom and Gary Petersen

Multiple Myeloma Life Expectancy - The Allo, Is it a Cure or just a very Risky Treatment of Last Resort

Multiple Myeloma - There is a New Kid in Town (mPatient's Jenny Ahistron) That is Out to Improve Myeloma Life Expectancy by Educating the Myeloma Patient Community!

Multiple Myeloma Survival in India by Priya Menon and Gary Petersen

Multiple Myeloma Life Expectancy Prognosis - Is Where You Live a Key Factor in Survival? by Gary Petersen, Pat Killingsworth, and Priya Menon

Multiple Myeloma Findings from ASCO 2013 by Dr. Shaji Kumar of Mayo Clinic - Improve Your Life Expectancy Prognosis by Being Your Own Best Advocate

Multiple Myeloma Survival - Please remember to LIVE!

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