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 (editor@myelomasurvival.com).  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"/  editor@myelomasurvival.com

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

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/ editor@myelomasurvival.com

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/ editor@myelomasurvival.com  

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

You know all the big names so you and I probably think that it has to be one of them.  Must be Mayo Rochester, Dana-Farber, UAMS, or Moffitt!  No, it is the Medical College of Wisconsin in Milwaukee, Wisconsin.  Their myeloma program is headed by Dr. Parameswaran Hari, and  their program currently has 1000 multiple myeloma patients under their care.

They have provided their 3 year survival of 93.8% vs. the SEER data of  55.6%.  Their 2 year survival was equally impressive at 97.7% vs. the SEER survival rate of 65%.  This is now the best 2 and 3 year survival rates for a facility yet presented on this site. This is a remarkable performance and is exactly why this site was developed.  This is such a great find, for a center that is not that well known outside the Wisconsin area.  I think Milwaukee's little myeloma treasure is no longer just their secret.  

If you are under the care of  Dr Parameswaran Hari at the Medical College of Wisconsin you are 13 times more likely to survive 2 years and 7.2 times more likely to survive 3 years under their care than under the care of the average SEER faciltity.  Link: http://www.mcw.edu/neoplasticdiseases/faculty/ParameswaranHari.htm#.T6Jn3Kt8Alc  

Together we can "SAVE LIFE"/ editor@myelomasurvival.com

It is funny how some people just cut to the chase.  One recently diagnosed patient has been emailing me and asked a great question: "How do you define a multiple myeloma specialist?"  She really made me think.  First, I thought, well,after a time you just know!  Sure isn't a very good definition for the newbie!  As as a longer-term survivor, you see the same names come up in research: Barlogie, Rajkumar, Anderson, Durie, Polumbo, San Miguel, Richardson.  So how do we accurately define the term Multiple Myeloma Specialist?  

One  way to locate a specialist is to find practitioners at the institutions that have the best survival rates as compared to the SEER data,  however at this point the specialists who post this data online or have provided it to this web site are limited.  I have found that if someone is a MM specialist, their time is in such great demand that they often do not have the staff or resources to provide accurate data on a timely basis.  When I check back with them after two months, they are truly sorry for the delay in providing data, and are committed to this project, but are too busy saving lives, and have not had an opportunity to provide the data yet. But they will, they assure me. With time the information will come and the results will show us who the best of the best are.  So how do we tell now?

There is no degree called Multiple Myeloma Cancer Specialist that I am aware of.  So given only the data that is posted here on this site and the knowledge I have obtained over the course of six years,  I will provide you with what I believe is the definition of a Multiple Myeloma specialist.

Characteristics of Multiple Myeloma Specialists

1. First, they are usually hematologist-oncologist.

2. They practice at hospitals that have a defined MM treatment program or department.

3. They attend the big MM seminars, ASH (the American Society of Hematology) and ASCO (American Society of Clinical Oncology).

4. They have MM publications and have most likely given presentation at ASH and ASCO.

5. They participate in clinical trials for MM.

6. They usually are located at larger, more prestigious hospitals like Mayo Clinic  in Rochester, Dana-Farber Cancer Institute, MIRT (Myeloma Institute for Research and Therapy) at UAMS,  Moffitt Cancer Center, M.D. Anderson Cancer Center et al.                  

7. The facility or department where they are located has myeloma in the name, like UAMS-MIRT  or IMBCR
( Institute for Myeloma & Bone Cancer Research).

Another step in finding a specialist near you is to search the web using the key phrase  "(insert your state) Multiple Myeloma Treatment Centers", or "(insert your state) Multiple Myeloma Treatment Programs. If you find  a Multiple Myeloma specialist, or you want to get more information on one of the doctors listed here, you can  search his name as follows: "Dr.(insert the name) Multiple Myeloma Specialist".  If you get a lot of great multiple myeloma information, chances are you have someone who is 95% more qualified than your average local oncologist. Just try this with a google search of Dr. Rajkumar, Dr. Barlogie, Dr. Berenson,
Dr. Durie, or Dr. Palumbo.  

I hope that this helps you to find a multiple myeloma specialist, and "May the odds be ever in your favor!"  Sorry, just saw the movie Hunger Games and their famous quote seems so appropriate for MM patients. 

May God bless your MM Journey/ editor@myelomasurvival.com