One of questions I ask in regard to these ever increasing risk factors is as follows. What are the 3 most important things that are required to insure your long term survival? SPECIALIST! SPECIALIST! SPECIALIST!!! As the disease progresses, it becomes more and more important to have a myeloma specialist on your team. They are the only ones with the expertise to provide skilled guidance for your care, whether it be as your specialist or the specialist with the second opinion. I hope that you find this new section of the web site of value in your myeloma journey.
I have just completed a segment on www.myelomasurvial.com that focuses on the higher risk elements of multiple myeloma. You can find it at the link: http://www.myelomasurvival.com/higher-risk-myeloma.html It provided information on Relasped, Refractory, and High Risk Multiple Myeloma. I believe that this sequence is the progression of risk in multiple myeloma. The first two are the stages of progression in multiple myeloma. The last is high risk which is the type of myeloma which is by far the most difficult to treat, and as a result has historically been the form that has the lowest life expectancy.
One of questions I ask in regard to these ever increasing risk factors is as follows. What are the 3 most important things that are required to insure your long term survival? SPECIALIST! SPECIALIST! SPECIALIST!!! As the disease progresses, it becomes more and more important to have a myeloma specialist on your team. They are the only ones with the expertise to provide skilled guidance for your care, whether it be as your specialist or the specialist with the second opinion. I hope that you find this new section of the web site of value in your myeloma journey.
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The numbers are in and the results have been tabulated. The multiple myeloma support group members live 2.2 times longer than the average multiple myeloma patient. The National Cancer Institute, which published cancer survival statistics for many forms of cancer, publishes an average life expectancy of 4 years for multiple myeloma. From the support groups who provided data, I found the average life expectancy of 9.1 years. Even thou there are some limitations in the accuracy of the study data, I am of the firm belief that the thesis that active support group membership improves the survival rate is correct. And the word "active" is important, in that there can be little value to the individual if they are on the membership list and never go to the meetings or ever respond to emails. Therefore active members were considered those who attended half of the meetings of more.
So what is the chicken and the egg thing anyway? All of the groups in the study (8 in total) were at least at the average life expectancy, however some were much, much better than the average. I had also asked each support group leader if they were close to a multiple myeloma center of excellence. I wanted to know if treatment at a center of excellence might be a correlating factor as well. One in particular was easy to analyze in that almost all of the 100 members of the Northern New Jersey Support Group were treated at the John Theurer Cancer Center at the Hackensack University Medical Center, and they had the best survival rate by a huge margin. So was it the chicken or the egg or both? I have asked the division chiefs Dr. Siegel and Dr. Vesole of the myeloma program at Hackensack for their survival data, and hope to receive it in the future. However, I think it is almost moot, because their support group results shout out success, and again support my other thesis, that having a multiple myeloma specialist on your team is essential to your long term survival. Good luck and may God Bless all who have to be on this 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 If you have myeloma and did not know Barbara Hammack (Boogie Barb), she was a more than 20 year survivor of this disease, and a member (no the heart) of the acor listserve. She has been a contributor on this patient to patient forum and was treasured for her compassion, kindness, caring, and a beacon of hope for all who asked for help. I along with a lot of myeloma patients will miss her optimism, and caring nature, and yes shed a bundle of tears at her passing. She can not be replaced and yesterday was a sad sad day for the entire multiple myeloma patient community, and of course to her loving daughter Debi and family. Barb was one who made the statistics look silly, and even though we seldom saw eye to eye on this one subject, I always was in awe of her humanity. Barb was LOVED and will be missed by all.
One of her very last contributions to the listserve was a thank you to everyone on the listserve for their kind words about her recent troubles, and a request that we not CLOG up the list with these emails, but keep about the business of the list. An example of her caring and compassionate nature can be witnessed in one of her quotes that one member of the listserve offered up as her very favorite "Boogie Barb" post. The post was as follows and was an answer to a myeloma newbie who was afraid the question they were asking might be too elementary for the listserve: NEVER be afraid to ask this group anything!!! But also understand thatfor some questions...such as yours...there isn't a solid answer. How/when will we begin our final descent? Many of us will relapse slowly...with our various blood counts going up a little each month until it clearly shows increasing activity. We may or may not have any symptoms at this time, and hopefully our oncologists will help us decide when it's time for treatment. That treatment may or may not work. If treatment doesn't work, there are probably more to try. Eventually, nothing will work and with our families, we'll have to decide when it is time to begin letting go. Others may suddenly develop kidney problems or break a bone or have spine pain. This could mean a more rapidl decline, and may be harder to treat. But, again, there would be every hope of getting past this crisis and doing well for many more years. Part of YOUR answer should be based on your own history with the disease. Were you diagnosed with the myeloma raging in your system? Was it hard to get this under control? How many different treatments have you been on? Have you "failed" them by the disease coming back quickly? These are some of the questions that can determine how aggressive your disease has been. What's your quality of life like now? How have previous treatments been on your QOL? Can you picture yourself continuing to fight this disease or do you feel simply spent? From everything I've learn in over 20 years of dealing with myeloma is that it is one difficult disease to pin down. There are so many scenarios. I've seen some of my myeloma friends die peaceful deaths after many years of controllable illness; others have progressed quickly. There just isn't a true answer to the questions that you - and everyone else on this list - really want to know, which is basically, "What the hell will my future be like and when and how will I die?" If anyone on this list HAS answers to those questions, I will happily defer. But because definitive answers are impossible, that's why this whole "live each day" stuff becomes a true goal. Of course we all think of what's in our future regarding myeloma but life can take many curves we just can't comprehend. Take me: Two weeks ago, I finished my final round of velcade, having finally achieved that illusive "complete remission" with no evidence of disease in either my blood work or my bone marrow. Hurray!! But three days later, my oncologist called me into his office to tell me I had developed "myelodisplasia symdrome," which can be a precursor to leukemia and often develops in people who have been treated for other cancers. Indeed, all the treatments that have kept me going for those 20 years, were probably factors causing this new problem. Right now, all I can do is "watch and wait" BOTH the myeloma and the MDS. Some remission! So, that's why "live each day" becomes the only way to live. I've moved on from my initial horror with the new diagnosis because I HAVE to. I've gone to a nearby beach, been back in the 1st grade classrooms where I volunteer and get lots of hugs to make these days special. And yeah, of course, I sat around stunned and pissed as hell, but at some point, I had to just let it go. IWhat I know is that the sun will come up tomorrow. I could choose to stay in bed; paralyzed by my fears, or get up and try to have a decent day. I'll have lunch with my best friend, and spend time with my daughter. Should be an okay day. What will my days be like in a month? Haven't a clue. I just know that whatever happens, I'll find a way to deal with it. In the end, most of us DO. I know folks on this list who have endured incredible journeys and I am in awe of their ability to still find joy. I strive to be like them, and like so many of the senior citizens I worked with years ago, who showed such resiliency in the face of tragedies. We endure. Maybe that's the only answer I can give you. As a minister once said, "What we fear, we will endure." I hold those words with me as I continue sailing in uncharted waters. Sail on, and keep hangin' in. Barb, may you rest in peace and keep hangin' in with the Lord, and recognized your passing is painful to so many that you have touched. Good Bye Barb/Gary Petersen Dr. Ravi Vij, Cure Talk Panel Myeloma Expert, Associate Professor of Medicine, Washington University School of Medicine, St. Louis, MO. Dr. Ravi Vij will be headlining an on line discussion on the latest discoveries and research for multiple myeloma. Also on the panel will be Pat Killingsworth (myeloma patient, advocate, and author), Lori Puente (caregiver to Dave and myeloma blogger), Nick Van Dyk (myeloma patient, humorist, and blogger), and myself Gary Petersen ([email protected]). There will also be other members of the panel. You will be able to log in and ask questions of Dr Vij. Dr Vij was recently awarded the MMRC(multiple myeloma research consortium), 2011 MMRC Center of the Year Award. The MMRC is one of the two best multiple myeloma organizations in the world and has already raised over $160 million dollars for myeloma research. As you might surmise the research efforts follow the money, and their efforts have and will continue to "SAVE LIFE". Please do sign in to participate in this LIVE panel discussion, I think it will be very informative and lively (given the panel membership). You can sign up at the following web site: http://trialx.com/curetalk/wp-content/s/index.html Hope to hear from you at the live meeting.
P.S - Now that the broadcast is over and recorded you can hear it at : http://trialx.com/curetalk/2012/08/thank-you-for-your-support-myeloma-cure-panel-talk-show-team/ With your help we can "SAVE LIFE"/ [email protected] The IMF(International Myeloma Foundation) www.myeloma.org and the LLS(Leukemia, Lymphoma, and Myeloma Society) www.lls.org , both have support groups for multiple myeloma patients. The locations of the current chapters are listed on their web sites. The meetings provide information on treatments, advise, support, and updates on the newest clinical trials. You create friend ships and this support provide a very positive atmosphere for the patient and there care giver. Anecdotal evidence would indicate that these groups do have a life expectancy that is much greater than the average of the the multiple myeloma patient community. Pat Killingworth a multiple myeloma activist and author has stated in his blog that his support group has a life expectancy much greater than the average. I belong to a support group and we have lost 12 of our 36 member is the last 4 years, and if we had an average life expectancy of 4 years as reported by the National Cancer Institute our group would have lost 18 members or 50%. If you do the math our group has a life expectancy of 6.0 years. This is 50% better than SEER and I am so thankful that our group has been better than average. Why are we better? We have great leadership, we support each other, we refuse to let our members accept substandard care, we are very knowledgeable about this very rare blood cancer, we usually find or have a myeloma specialist on our team, and each member and their care giver is resolved to "BEAT the BEAST"! I am developing more substantive data to support this thesis, and have sent a letter to the IMF(International Myeloma Foundation) support group leaders for their participation. This request has resulted in 9 responses, that in my opinion support this thesis. I will be updating my blog with the results in the near future. Find additional useful information by going to www.myelomasurvival.com . Together we can "SAVE LIFE"/ Gary R. Petersen On Friday the FDA approved the use of Carfilzomib(now named Kyprolis) for use in refractory myeloma. This was reported in the attached article in the Myeloma Beacon at http://www.myelomabeacon.com/news/2012/07/20/fda-approves-kyprolis-carfilzomib-for-relapsed-and-refractory-multiple-myeloma/, and another article in the Wall Street Journal at http://online.wsj.com/article/SB10000872396390444330904577539031234823376.html, which also outlined the importance of the work of the MMRF, Multiple Myeloma Research Foundation, in helping to develop these new drugs. The MMRF has played a key role in providing the support and financing for new multiple myeloma drug development. It is safe to say that they will be a key element in the work to find the "Cure".
Previously, this drug has been available to only a small percentage of the Myeloma patient community, and approval was based on a 266 patient study. I do not include unapproved drugs in the clinical trial area of the home page of www.myelomasurvial.com, but you will now be seeing some great results for those for Carfilzomib in the near future. There have been some excellent results to date, and Carfilzomib will now be more widely available to all patients who can meet the criteria for refractory myeloma. One of my readers has asked me to include a section for treatments for relasped (it has come back but will be treated with a previously used treatment), refractory(it has come back and no longer responds to the old treatment, but others may or may not be available), and high risk patients(those that have a very difficult form of myeloma that proves difficult to find a viable treatment plan). I now think it is time to expand the site to include this subset of patients. So you can expect to see this in the next several months. Just wanted to share the great news. Best Regards/editor@myeloma survival.com You can read a updated (07/05/2015) version of this post if you CLICK HERE.
The new SEER data for multiple myeloma has been published by the National Cancer Institute, and the average life expectancy remains at 4 years for the second year in a row. However, some people beat the odds and live 10 to 20 years or more. When I was first diagnosed, the data for a person with dialysis-dependent kidney failure was just 3 months, and the overall average was 3 years. Now I am a 6 year survivor, so I have beaten the average life expectancy prognosis at the time, and this was with what was called a negative prognostic indicator (kidney failure). So I believe you can break a patient's ability to beat the odds into two parts. Part one is disease dependent, or what was the hand that you were dealt. Part two is related to the level of care that is available to you. For more information on survival rates and life expectancy CLICK HERE. Part 1 - Disease Dependent Some people are just plain lucky and are given a form of myeloma that is not that aggressive. In other words they have myeloma, but it happens to be smoldering myeloma. This form of the disease can be present in the patient but not show any outward symptoms. It can remain in this mode for 5, 10, or even 20 years. The age of the patient is very important, in that you are 2 times more likely to survive if you were diagnosed at 49 years of age or less. The average age of the typical myeloma patient is 70. You can read more on this subject at the link: http://www.myelomasurvival.com/1/post/2012/10/multiple-myeloma-the-younger-you-are-the-better-the-prognosis-a-much-improved-life-expectancy-and-survival-rate.html Some people may have an active disease but do not have any of the negative prognostic indicators. These include, but are not limited to, deletion of chromosome 17p and translocation of 4;14 or 14;16 or 14;20. Your myeloma specialist will run the FISH test or other genetic tests to determine if you have any of these negative prognostic indicators. If you are considered high risk, the life expectancy is just half of the current average, or just 2 years. You can read more about high risk multiple myeloma at the link:http://www.myelomasurvival.com/higher-risk-myeloma.html The sensitivity of the disease to treatment is also important. My myeloma seemed to be very sensitive to Thalamid and Dexamethasone and put me into remission very quickly. Some people might have the same experience with Revlimid, Velcade, or Dex, or any combination of these drugs. If the disease comes back, as it often does, the re-application of the same regimen may continue to work for years. I know one patient who has taken Thalomid for years as his only treatment and remains in remission. This is working well for him. And of course if the average is 4 years, half of the people will invariably beat the average. I am sure there are other disease factors, however, what I want to discuss now is the part of disease control that you may or may not have more control over. Part 2 - Quality of Care There are some elements that you may or may not have much control over, the first of which is the availability of insurance. If you do not have insurance or have no access to care, the average life expectancy is less than one year. However, the Affordable Care Act may provide an option for the 15% who are not insured, and Medicare, Medicaid, and drug company assistance programs are also available. In addition, there are other programs we have discussed on the bottom of the home page at the web sitehttp://www.myelomasurvival.com/index.html that can be of assistance. Unfortunately without care, like people who need dialysis (which is always covered by Medicare), you will have below average life expectancy. Not all oncologists, or hematologists are the same, and the data shows that some provide an average life expectancy of 10 years or more, while the average remains stagnant at 4 years. For a listing of these exceptional specialists go to www.myelomasurvival.com or for a more extensive list without survival history just Click Here. And obviously, if your myeloma specialist has an average patient life expectancy of 10 years, their patients will beat the average by more than twice the average. This is what I did when I chose to get my SCT(stem cell transplants) at University of Arkansas for Medical Sciences, UAMS, which has a myeloma program called MIRT, Myeloma Institute of Research and Therapy. At the time they had over 10,000 transplants under their belt, and as a result they were expert at the process, and knew what could go wrong and had a plan in place to get you through any potential complications. And I have found from my work on this site that centers like Mayo, Dr. Hari(Medical College of Wisconsin), UAMS, or Dr. Berenson's (IMBCR) have very different approaches to treatment, but because they are expert in what they do they have similar results. A specialist for brain surgery is who you would chose over any other surgeon if you had a brain tumor, why would you not do the same for myeloma? A link at how to find a myeloma specialist is: http://www.myelomasurvival.com/1/post/2012/04/next-step-how-to-get-a-second-opinion-for-multiple-myeloma-treatment.html or http://www.myelomasurvival.com/1/post/2012/04/how-do-you-define-a-multiple-myeloma-specialist.html Myeloma specialists have access to drugs that other oncologists do not. Because they are the thought leaders, they are involved in clinical trials, and can obtain some drugs through other programs that lesser known oncologists do not have access to. Worse yet, oncologists who are not myeloma specialists may not even know that some of these drugs even exist. For example, some of the well connected specialists have access to unapproved drugs like Carfilzomib, or Pomalidomide through special programs. Or some specialists can use drugs that are only approved for relapse or secondary therapy options, and obtain approval to use them for newly diagnosed patients. They also have access to the best clinical trials like VRD for first line therapy which provides a response in 100 percent of patients. When you run out of options with the currently approved drugs, they can provide access to those that have done great in clinical trial, but are not currently available to the general public. Sometimes it is who you know! I also think the quality of care that you receive can also be affected by the knowledge of the patient, and this can be obtained by doing your research on finding the best approaches to care by looking at the work of the best myeloma specialists on-line, and by going to great sites as listed in the Resource Section of www.myelomasurvival.com. In addition, joining a support group of the International Myeloma Foundation or the LLS (Leukemia, Lymphoma, and Myeloma Society) will provide more great information to improve your life expectancy. I have found that the average life expectancy of most of these support groups far out-performs the average. Knowledge is power! Additional information on the benefits of support group membership can be found at: http://www.myelomasurvival.com/1/post/2012/08/multiple-myeloma-support-group-members-do-have-a-longer-life-expectancy-and-improved-survival-rate-but-is-it-the-chicken-and-the-egg.html There are 80,000 multiple myeloma patients, and if we can move the average from 4 years to 10 years life expectancy with the myeloma specialists, we could save 80,000 times 6, or 480,000 years of LIFE. You all can help by getting this message out to the myeloma patient community though Facebook and Twitter. Everyone knows someone who has myeloma or may have a friend or family member that can be helped by this information. With your help we can "SAVE LIFE"! Good luck and God Bless your Myeloma Journey/ [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 I, along with the rest of the myeloma community are very optimistic about the future of care for multliple myeloma patients. Much of this optimism is because we continue to hear the great news from ASH(American Society of Hematology) and ASCO(American Society of Clinical Oncology) meetings, as well as the excellent results that are posted on this site. So it came as a great surprise to me when the new statistics from the National Cancer Institute were updated on April 30, 2012 showed a 2% reduction in the 4 year survival. The 4 year survival got worse not better and went from 50.4% to 49.2%, and I can not tell you how disappointed I was to see this. This data is available at the following web link: http://seer.cancer.gov/csr/1975_2009_pops09/browse_csr.php?section=18&page=sect_18_table.09.html The National Cancer Institute provides this valuable information in the form of their Surveillance, Epidemiology and End Results (SEER) Cancer Statistics Review.
To me there is such a large gap between what we hear and what we see. The majority of specialists who have provided their data on this site or are with nationally recognized programs reflect results that are much better than those listed on SEER. As we have discussed on this site before, their are many possible causes for this anomaly, but all of them combined represent a possible 10 or 20% difference, but not 100 to 500% difference. I again make the case that it can only be the quality of care, and as a result I believe as do most myeloma specialists, that all multiple myeloma patients should have a multiple myeloma specialist on their team to narrow the gap between what they hear and what they experience. God Bless all who have to be on this multiple myeloma journey/ [email protected] There are just a few meetings each year that provide the forum for the latest and greatest in Blood Cancer research, and in the US the two largest are ASH ( American Society of Hematology), and ASCO ( American Society of Clinical Oncology).
Each of these meetings have sessions that are specific to Multiple Myeloma, and you can find great information on research and the results of clinical trials that are being developed. What you can also find is that the myeloma specialists attend these meetings, and they are the leaders in the Myeloma field and generally will provide patients with the best and most up to date care. Some who are in the thought leadership roles conduct presentations at these meetings, and some of the best of the best are asked to give their comments on what they feel are the most outstanding findings presented at this years meetings. A recent article on the Managing Myeloma web site at the link: http://www.managingmyeloma.com/index.php?option=com_content&view=article&id=709&Itemid=86 provides a great summary of the best of the best findings at this conference. Another update from Patient Power that features Dr. Berenson, a Myeloma specialist from the Institute for Myeloma and Bone Cancer Research can be found at the following link: http://www.patientpower.info/video/asco-myeloma-update-more-promising-medicines-on-the-way I would recommend that you take a few minutes and listen to the experts. The list is led by Dr. Parameswaran Hari, from the Medical College of Wisconsin, who has provided the best two and three year survival yet presented to this web site. It also includes Dr. Palumbo of Italy who has provided data on clinical trials that show excellent results and, who by any measure is one of the best in all of Europe, and Dr. Anderson of Dana-Farber who is a thought leader in the US and has Clinical trial results on VRD that have now become a standard of treatment for newly diagnosed patients. Dr. Berenson has provided the best 5 year overall survival presented on this site and is definitely a US leader in the treatment of myeloma. Please take the time to listen to these excellent myeloma professions talk about the current and future treatments. You will find that a myeloma specialist is a must have for your team to insure the longest life expectancy. Good luck and may God Bless your Myeloma Journey/ [email protected] Dr. Brian Durie is a renowned multiple myeloma specialist and the CEO of the International Myeloma Foundation. The IMF plays a leadership role in the fight against this disease and a recent post on his Blog dove tails nicely with what we have been discussing in recent posts on this blog. He will also be going over a summary of the recent myeloma research results on a live webcast June 28th 7:00am Eastern time of the June ASCO meeting (American Society of Clinical Oncology). This is a great way to get a summary of the best of the best new information on myeloma research as well as new drugs in the pipeline. His blog post is at the following address: http://myeloma.org//MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/05/10-steps-to-seeking-a-second-opinion.html To sign up for his webcast you can go to: http://myeloma.org/ArticlePage.action?articleId=3695 Now that it is after June 28th, you can hear the recorded presentation and view the slides at: http://myeloma.org/ArticlePage.action?articleId=3696
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AuthorGary R. Petersen CategoriesArchives
January 2025
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