You can read a updated (12/01/13) 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/ editor@myelomasurvival.com



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


Comments

Neusa Appler
03/01/2013 8:35pm

The doctors detected a Multiple myeloma in my husband 3 years ago and his kidneys were shutting, now thanks to the right doctors and care (though we live in the Keys) he is great and I am sure he will be, everyday better. I think it is important to have a high profile when dealing with ill people. Myself, maybe thanks to my Brazilian roots. I keep him HAPPY! We dance by our self, tell each other hot jokes I play with him all the time and he is everyday better. His blood tests are hard to believe. If I can help someone I will be happy. Don't treat people like walking dead ( I saw people do this in my sub division) tell the person EVERY DAY how good they look and what a nice human being they are. If I can help someone I will be happy! Neusa Appler n_appler@yahoo.com

Reply
03/06/2013 3:59pm

Neusa, So glad to hear that your husband is doing well. I found as you have that finding a multiple myeloma specialist is key to fighting this disease. It also sound like you both have continued to have an "Active" and fulfilling life as well. God Bless your families myeloma journey!/Gary Petersen

Reply
Stephanie
08/14/2013 12:48am

My father was diagnosed with Multiple Myeloma in 1997. There 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 year 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.

Reply
Stephanie
08/14/2013 12:49am

I meant 6 months. The original oncologist told my dad his life expectancy would be around 6 months. It has been 16 years.

08/15/2013 5:10pm

Stephanie, what a wonderful story of not taking NO for an answer and getting the second opinion for multiple myeloma (a rare disease). MD Anderson has produced some outstanding multiple myeloma professionals and you found one of them in Dr. Alexanian. They also produced Dr. Orlowski, and Dr. Bart Barlogie, two of the best myeloma specialists in the world. Love your story!! Gary

Edivanir Fontanelli
02/08/2014 11:10am

Neuza, it was nice to read your comments, Iam a Brazilian too, my husband (from California) is 83 and has M.M, after 5 months of chimo he is doing very well, in remission, I do believe that having a positive attitude, being happy helps a lot, and as we live in north Brazil (Joao Pessoa) he eats lots, lots of fruits, our house faces the ocean and that too helps...good luck to you. If you like to e-mail us it would be a pleasure...
Diva/Albert

Reply
Cindy Serino
03/05/2013 9:12pm

Please help me. My cousin is newly diagnosed and has 9 weeks of chemo starting on March 15. She is in Norway. Does anybody have any information on how they treat this there? She is only 40 and a mother of two young boys.

Reply
03/06/2013 4:52pm

Cindy, As long as your sister is in the care of a multple myeloma specialist her care should be very good. Dr. Torben Plesner, MD. Vejle Hospital Dept. of Hematology Kabbeltoft 25. Vejle Denmark is one doctor that is on my list of international specialists. I found a recent post of a myeloma meeting called Nordic Expert Practice in Multiple Myeloma and is at the link: http://www.primeoncology.org/nordicepmm2012
At this meeting one of the presenters was from Norway and is Anders Waage, MD University Hospital Trondheim, Norway, and he also passes my myeloma expert test. Good Luck and may God Bless your cousin's myeloma journey/Gary Petersen

Reply
MSM
03/12/2013 8:47am

Please help. My mother in law is recently diagnosed with multiple myeloma along with plasmacytosis. she is of 53 years and already had undergone thyroid surgery 10 years back. We live in Pakistan.

Reply
03/13/2013 9:25am

MSM, I do not know of a specialist in Pakistan, however you might want to contact Dr. Asher Channan-Kahn of Mayo Jacksonville (904) 953-2000, who studied in Pakistan and may know of someone there that he would recommend. He may also provide you with a second opinion either hear or in conjunction with your hematologist-oncologist.

In addition, their are a few MM specialist that will do a consult over the internet and you can find them at the link: https://2nd.md/disease/multiplemyeloma

If your mother in law can travel to Europe or the US you can get a second opinion in person that can be managed by your local hematologic-oncologist. A link on how to get a second opinion is: http://www.myelomasurvival.com/1/post/2012/04/next-step-how-to-get-a-second-opinion-for-multiple-myeloma-treatment.html

God Bless your family's myeloma journey/ Gary Petersen

Reply
MSM
03/18/2013 11:00pm

Thank you so so much. I'm really grateful for it all.
I recently have got her bone marrow test reports which states:

SERUM IMMUNOFIXATION:
FINDINGS ARE CONSISTENT WITH IgG KAPPA MONOCLONAL GAMMOPATHY. QUANTIFICATION OF IgG AND KAPPA LIGHT

CHAIN IS ADVISED.


PROTEIN ELECTROPHORESIS:
A SHARP, DISCRETE, WELL DEFINED PEAK IS SEEN IN THE GAMMA REGION, CONSISTENT WITH A MONOCLONAL

GAMMOPATHY. FOR FURTHER EVALUATION SERUM IMMUNOFIXATION, SERUM IMMUNOGLOBULIN AND LIGHT CHAIN (KAPPA AND

LAMBDA) QUANTIFICATION, URINALAYSIS FOR BENCE JONES PROTENINURIA, BONE MARROW EXAMINATION AND SKELETAL

SURVEY IS ADVISED. CLINICL CORELATION IS INDICATED.

BENCE JONES PROTIENS: NEGATIVE

BONE MARROW: PLASMACYTOSIS

SKELETAL SURVEY: NORMAL STUDY

CALCIUM LEVEL: NORMAL

Can you just gave me an idea what should be the best possible treatment for such condition

03/19/2013 10:31am

MSM, I am not a doctor and am not qualified to comment on this data. However from a layman's perspective, this looks like a summary and behind it are the actual reports, which all MM patients should have access to, and you should request. Key indicators are M spike, B2M levels, Kappa and Lamda light chain levels, Percent white blood cells in the Bone Marrow, and if possible a PET scan which will show the level of disease involvement in the bones.

The one thing that I did notice is that the "Findings are consistent with IgG Kappa Monoclonal Gammopathy" If this is the same meaning as MGUS, it usually indicates the the disease has yet to advance to full blown Multiple Myeloma, and often is just followed and no treatment is required until it progresses. In summary, you need to get the actual data, get the additional tests recommended, ask your doctor to explain the findings, and if possible get a second opinion. A link that defines MGUS is: http://www.mayoclinic.org/monoclonal-gammopathy/?wt.srch=1&wt.mc_id=google&campaign=mcfbonemarrow&state=florida&kw=monoclonal%20gammopathy&ad=10831664137&Network=Search&SiteTarget=

Best Regards/Gary

03/13/2013 1:19pm

MSM, I looked at the CIMBCR list of 500 transplant hospitals and they list the following 3 in Pakistan:

- AMC Rawalpindi Pakistan
- National Institute of Blood Diseases and Bone Marrow Transplantation Karachi Pakistan
- Aga Khan University Hospital Karachi Pakistan
The National Institute of Blood Diseases seems to have a lot of experience with myeloma. Good Luck and God Bless/Gary

Reply
03/24/2013 11:20am

Can you please help me?
I require a doctor that is ASH affiliated in Peru.
I have MS and have had a stem cell transplant in UK under Professor Goldstone.
However i live in Peru for 6 months of each year and need a specialist in Peru to keep my monthly tests up to date.
My Professor wants me to have a consultant whom has the American Society of Hematology (ASH)
Regards
Barry Draper

Reply
03/24/2013 1:20pm

Barry, I do not speak Spanish so I am not sure how effective some of my searches were. I do know that two hospitals in Lima do perform stem cell transplants and have some ASH involvement, but I have not been able to identify MM doctors their. The facilities are two of the 500 CIMBCR transplant centers. They are:

Hospital Nacional Guillermo Almenara Irigoyen Lima Peru
Hospital Rebagliati Lima Peru

If you search these hospitals in Spanish you may have better luck that I did. Good Luck and may God Bless your myeloma journey/Gary

Reply
JESSICA
04/16/2013 2:11pm

MY DAD WAS DIAGNOSED 1 YEAR AGO WITH MULTIPLE MYELOMA. HIS KIDNEYS SHUT DOWN IN FEB, HE HAS BEEN ON DIALYSIS. THE MYELOMA IS IN HIS BACK AND FLUID IN HIS LUNGS. WE ARE IN THE HOSPITAL AND THEY SAY THERE IS NOTHING ELSE THEY CAN DO BUT I DONT BELIEVE IT! HE IS 100% COHERRENT, JUST IN PAIN.... DOES ANYONE HAVE ANY SUGGESTIONS ON WHAT TO DO. WE LIVE IN TORRANCE, CALIFORNIA.

Reply
04/16/2013 3:02pm

Jessica, this sound a lot like when I was diagnosed. I had dialysis dependent kidney failure and put on dialysis. My doctors at Mayo gave me Cytoxin, Thalidamide, and dex. I then went to UAMS and had two stem cell transplants and am now 7 years in CR, I will take the rest of my conversations with you off line, but yes you need to get a second opinion from Dr. Berenson in LA or Dr. Barlogie in Little Rock. I do not know the details of the prior treatments, but it sounds entirely too early to throw in the towel.

Reply
Amar
04/23/2013 11:23am

My FIL (70 yo) recently diagnosed with multiple myeloma and been in hospital (One week) at Robert Wood Johnson, New Brunswick, NJ.
He is getting discharged today with his treatment cycle starting on Saturday and Tuesday cycle for 4 weeks, followed by one week break.
He is not stable on his own so the hospital asked us to make sure some one is there with him all the time, and while no one is around, have him stay put. They also assure he will be back on his feet in few days.
This is all very overwhelming for us and we don't know whats right from wrong, whats good and whats not.
He does not have insurance and hospital and social service is trying to get us the best with that. All doctors seems to be nice.
My immediate concern is, would he still be sent home if he had insurance. Or its just me who is getting paranoid?

Any tips or suggestions will be very helpful.

Reply
04/23/2013 12:21pm

Amar, the Robert Wood Cancer Center is one that is recommended by the Myeloma Beacon web site, however I have no survival data for their facility. They are a very professional cancer center so I would believe that they sent him home because they felt it was best for him. Much of my treatment over 7 years was chemo at the hospital then let out to go home. The same with my Stem Cell Transplants.

If your father in law is an American Citizen he is entitled to Medicare, and this will cover a lot of the expenses. If you go to the www.myelomasurvival.com home page, you will find links near the bottom to the LLS, the IMF, and Cancer Care CoPay which will help to provide financial assistance. The Cronic Disease Fund at: http://www.cdfund.org/ is also a good source of help.

Pat Killingsworth wrote a book about financial aid and you can see his writeup about it at: http://multiplemyelomablog.com/2013/02/financial-aid-for-myeloma-patients-and-caregivers.html

Two of the most expensive and widely used drugs are Revlimid and Velcade, and drug company assistence can be found at:

Revlimid -http://www.pscard.com/index.cfm/patient-assistance-program/ponstel-to-tazorac/revlimid-patient-assistance/

Velcade - http://www.velcade-hcp.com/reimbursement/vrap.aspx?page=1

The John Theurer Cancer Institute at Hackensack, NJ would be my first choice for treament for MM in NJ, with either Dr. Versole or Dr. Siegel.

Good Luck and God Bless/Gary

Reply
Amar
04/25/2013 8:58am

Hello Gary
Thank you for prompt response and apologize for late reply.
He is not a citizen, infact he is in the process of obtaining his permanent residence status.

I will certainly go ahead and check out those websites and books you have mentioned. Thank you so much for sharing it.

We will be beginning his treatment cycle this saturday at RWJ and ultimately his treatment will be moved to Cancer Inst of NJ. I believe he will be covered by charity care for out patient treatments, but not certain for how long and how much.

Amar

Reply
BKT
04/25/2013 6:31pm

Hi Gary, thank you for sharing this information. My aunt (who is in India, I am in the US) was recently diagnosed with multiple myeloma. It started with what was assumed to be a UTI. Recently, she fractured her pelvic bone. We're worried about her prognosis -- she is over 70 and has diabetes. Any advice or good word appreciated.

Reply
04/27/2013 8:51am

BKT, I am sorry to hear about your aunt. If you go to my web site www.myelomasurvival.com and read the home page and the blog starting at Why you need a myeloma specialist on your team, I think it will give you and your aunt a good background. Also the links at the bottom of the home page are a great resouces as well. The IMF, Myeloma Beacon, Managing Myeloma, and Multiplemyelomablog.com are all excellent resources. With a myeloma specialist on your aunts team, if she is low risk(85%) she can expect to be around for a very long time. Greater than 10 years, and probably long enough to be alive for when the cure is developed.

I do not know of any myeloma experts in India, however I am sure there are many, I am just not knowledgeable about the myeloma experts from India. However, Priya Menon of Cure Talk has written the attached about one Dr. and you may find it of value for your aunt. The link is:
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/

If they are suggesting a transplant, the CIMBCR approved transplant centers in India can be found at the link:
http://www.cibmtr.org/About/WhoWeAre/Centers/Pages/index.aspx?country=India

I would recommend a second opinion from one of the best doctors in the USA who happens to be from India, so any coordination of care between the two doctors should be seamless. His name is Dr. Ravi Vij and heads the Myeloma Program at Washington University Medical Center in St. Louis. You can get this second opinion for $250 US over the internet if you go to the link: https://2nd.md/disease/multiplemyeloma

BKT, good luck and may God bless you aunt's myeloma journey/Gary Petersen/editor@myelomasurvival.com

Reply
Bkt
05/05/2013 11:17am

Gary, thank you so much for the information! I have forwarded it to my relatives in India. You provide such a service here, I am so glad I came across this very informative website. Best wishes to you.

Judith McCanless
06/01/2013 12:01pm

Thank God I found you. I am a 5 year survivor. I have chromosome 17 involvement and am out of remission( 1 transplant and 1 clinical trial under my belt!) I start VDT-PACE on Mon. WIsh me luck!

Reply
06/02/2013 12:47pm

Judith, Thank you for your kind response! I sometimes wonder if what I do is having a positive impact, and it is comments like yours that keep me motivated!! It has taken me two years to provide just 12 survival rate doctor responses, so it can be frustrating. Thank You so much. I was going though another low point, and asking myself if what I was doing was of any value to the myeloma patient community.

Reply
06/02/2013 12:56pm

And of course good luck with your VDT-PACE, which I had twice. And as always may God Bless your and your loved ones myeloma journey, Gary

Reply
Robert Lewy
06/02/2013 12:00pm

I have a question to ask . My I email you directly?
Thanks
Dr Robert Lewy

Reply
06/02/2013 12:39pm

Dr. Lewy, feel free to email me at editor@myelomasurvival.com at any time for any reason. Gary

Reply
Rachel
06/19/2013 8:37am

Hi,
I did not see the JOHN THEURER CANCER CENTER Myeloma Center in Hackensack NJ as one of your top centers. Do you have any info that this is a good center to be treated at? The doctors name is Dr. Richter.

Reply
06/19/2013 10:46am

Rachel, I do not have any survival information from The John Theurer Cancer Institute, although I had made several requests. Everything that I have heard about JTCI has been good, and you can read a blog post I made at the link:

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

Dr. Richter worked with two of the finest MM specialist Dr. Versole and Dr, Sundar Jagannath when he did his residency at St. Vincent’s Hospital - New York Medical College. Two of the doctors at JTCI, Dr. Versole and Dr. Siegel are on my list of MM speciists listed at www.myelomasurvival.com. I think you are in good hands at JTCI. Good Luck and may God Bless your myeloma journey/Gary Peteresn

Reply
Alex Rivas
06/20/2013 8:12pm

Thanks for sharing this information with all of us. I am 52, live in Costa Rica and was diagnosed with MM 9 months ago. At that time, my spine was very damaged with a broken L1 and several compressed vertebrae. My myeloma proved to be very sensitive to Thalidomide, Dexamethasone and Cyclophosphamide and put me into remission quickly. Now I feel great and I am a candidate for a bone marrow trasplant. Taking into consideration the risks of a trasplant I hesitate whether I should continue with chemo therapy and leave the possibility of a trasplant until after my MM relapses. Please tell me what your opinion is regarding this issue (SCT vrs chemo therapy). Thanks in advance.

Reply
06/20/2013 9:15pm

Alex, you ask a great questions, and it is one that the world's multiple myeloma experts are debating. Their is a treatment continuum, with one extreme the aggressive approach "More is Best" at UAMS-Little Rock to the "Less is Best" approach by Dr. Berenson of the IMBCR in LA. And in the middle are the programs like Mayo, and MD Anderson. So to answer you question, a low risk patient, with the right MM specialist can get great results no matter the treatmment philosophy. So if their are no MM specialist in your area, I recommend that your doctor look into the mSmart program that Mayo Clinic put together that is a step by step outline of thier treatment philosophy. You can read my blog post at the following link:

http://www.myelomasurvival.com/1/post/2013/04/what-to-improve-your-multiple-myeloma-prognosis-just-ask-what-would-mayo-do.html

So you need to have a FISH test if you have not already had one and find out what Chromosome characteristics you have. Are you high, intermediate, or low risk. 85% of patients are low risk and those are the ones that have great future. High risk patients, need to find one of the best MM specialist to provide a treatment plan, and if non in your area then a good place is to do it on line at the web site:

https://2nd.md/disease/multiplemyeloma

There are four excellent myeloma specialists that will give you a second opinion over the phone or video call for less than $300 US.

Alex good luck and may God Bless your myeloma journey/Gary

Reply
Alex Rivas
06/25/2013 1:50pm

Thanks a lot for your kind response, Gary. I've been treated by Costa Rica's Social Security System which is very well prepared for treating diseases such as ours in terms of infraestructure, equipment, medical personnel, medicines, etc. My head physician is an excellent Hematologist that favors traditional treatments with chemo and no ASTM. They already did the FISH test on me and I am supposed to be a low risk patient, so recently Thus, I was offered to consider an ASTM. The transplant specialist is in favor to do it asap, but after doing some research I decided to postpone it until after my MM relapses.My decision was based mainly on the following facts: a) On April 1, 2013 the Mayo Clinic publlished an article called "New Multiple Myeloma Treatment Guidelines Pesoalize Therapy for Patients" and they now suggest "Greater emphasis on delayng stem cell transplants to take advantage of improved chemotherapy resulting in better responses". b) At this year's ASCO's Annual Meeting on the subject of "Early vrs Delayed autologous stem cell transplant (ASCT) in patients receiving induction therapy with lenalidomide, bortezomib, and dexamethasone (RVD) for newly diagnosed multiple myeloma MM)" they concluded that "Transplantation-eligible patients who receive RVD as initial therapy followed by erly vs delayed ASCT result in comparable overall survival. In carefully selected newly diagnosed myeloma patients with lower ISS stage receiveing RVD as induction therapy, planned delayed ASCT results in 5-year survival rates close to 90%". c( During my last chemo session I met another MM patient, a 67 year old lady who was diagnosed with MM 12 years ago and is in excellent condition after been treated only with Thalidomid, Dexamethasone and Cyclophosphamide during all this years. Now I have to decide if I harvest my bone marrow now or later, but I have plent of time to make this decision.

06/25/2013 2:22pm

Alex, you are a truly a well informed multiple myeloma patient! As a knowledgeable patient, with a low risk MM signature, and a skilled treatment team you will be around for a long long time. I was originally treated at Mayo with CyTD as well and it was very effective for me and put me into CR.

On collecting stem cells, it is not scientific but logical to think that the sooner after your first remission, the stem cells may have the least drug resistance, or not been able to develop drug resistance, so early stem cell collection may be better.

Alex, I am glad the CyTD is working well for you and may God continue to Bless your myeloma journey/ Gary

06/28/2013 7:01am

First of all, congrats for beating kidney failure and being 6 year survivor. And, you are absolutely true that with the kind of medical technology available now, sever diseases of the yesteryear can be effectively cured and many of them easily cured. Could you please give more details on the symptoms of myeloma?

Reply
06/28/2013 4:29pm

Omnitech, some great resources for details of myeloma symptoms can be found at the following two links:

http://myeloma.org/ArticlePage.action?articleId=2732

http://www.themmrf.org/living-with-multiple-myeloma/newly-diagnosed-patients/what-is-multiple-myeloma/symptoms.html

Reply
07/10/2013 1:41am

Hello it seems that your tweet button is not working properly, can you please fix this problem soon.

Reply
Debra Cardone
07/23/2013 1:15pm

Do you know of a multiple myeloma specialist in San Francisco, Berkeley, or Palo Alto? Is UCSF a good multiple myeloma cancer center? Please advise.

Reply
07/23/2013 2:49pm

Debra, Yes I believe that there are at least two. I have meant to include Dr . Jeffery Wolf from UCSF for a while, and your request has provided me with the incentive to vet him with my selection criteria. One that seems to be an up and comer is Dr. Michaela Liedke from the Stanford Cancer Center and is a myeloma panel member for the NCCN. Good luck and May God Bless your Myeloma Journey/editor@myelomasurvival.com

Reply
Ann Johnson
07/31/2013 2:58pm

My husband age 71 just diagnosed with smoldering myeloma, started with severe anemia. Bones clear, everything else neg except high protein level markers. He is strong and in good health otherwise. Ha bone marrow tests today and will see course of therapy
Hope he makes good recovery or control of this disease. Comments.

Reply
08/01/2013 7:40pm

Ann, Do you have a Multiple Myeloma specialist on your team.? If not you should look to add one from the list provided on my site or one that you find yourself. One concern I have is that if your husband exhibits anemia or one of the CRAB (High Calcium, Renal issues, Anemia, or Bone) issues that are considered to be part of active MM, and your bone marrow biopsy has greater than or equal to 10% plasma cells you are considered to have active myeloma. So with anemia, and no bone marrow biopsy as yet, I do not see how your husband can be considered as smoldering as yet. You can find a definition of smoldering MM at the link: http://www.jnccn.org/content/9/10/1146.full.pdf
Read through my blog posts and it will help you better understand the need for a MM specialist on your team. Good luck and may God Bless your myeloma journey/Gary

Reply
ann johnson
08/01/2013 7:59pm

Thank you. Next week we find out what the marrow test reveals. I am devastated as he just retired and now this...I'll repost after 8/9 and will know more. Thank you so very much and I'll be back.

Ann Johnson
08/13/2013 1:52pm

Marrow tests done, Multiple Myeloma. Only the anemia present. being treated with Dexamelthasone and Revlemid. Possible bone marrow treatment at Stanford, CA in near future...Otherwise in good health. I am encouraging positive thinking and doing all that is necessary for him to live to be 80, as he is 71 now. Dr. said start jogging again, back to your routine. As soon as he is stable, and has a good response to the drugs, we hope he can resume as normal a life as possible. Ann

Debra Cardone
07/31/2013 9:04pm

Thank you Gary. I have received a referral to UCSF with Dr. Wolf's team and may have a stem cell transplant the first two weeks of August. The doctor I met at UCSF seems outstanding and quite knowledgeable, so I did not look into into Dr. Liedke at Stanford.
My current doctor is at the Berkeley Alta Bates Cancer Center, and he told me that due to medical and administrative issues Stem Cells can no longer been done at Alta Bates in Berkeley.
I had one stem cell transplant and was in remission for about four years, and felt GREAT! I am hoping the second one will be just has successful.

Reply
08/01/2013 7:42pm

Debra, Glad to have helped! Gary

Reply
Shannon
08/01/2013 5:01pm

Can you please tell me the name of a good myeloma doctor in Ontario Canada?

Reply
08/01/2013 7:47pm

Shannon, you have on of the best in the world by the name of Dr.Donna Reece - Princess Margaret Hospital, Toronto, Canada. Good luck and may God Bless your myeloma journey/Gary

Reply
Raghu
08/08/2013 3:23pm

Hi, My mom has been diagnosed with MM. She lives in India the Southern part. Do you know of any good specialist MM doctors in that area? Please let me know.

Reply
08/09/2013 8:20pm

Raghu, If you go to the link: http://www.myelomasurvival.com/1/post/2013/07/multiple-myeloma-survival-in-india-by-priya-menon-and-gary-petersen.html

This is a blog post on care in India, and there are at least three hopitals listed that have excellent myeloma care. Hope this helps/Gary

Reply
Melanie
08/08/2013 8:05pm

Hi my name is Melanie,

My mom was recently diagnoised with MM and is currently under the care of a Oncologist/ Hemotologist from UAB in Birmingham AL. I meet with her Doc and she seems to be very knowlegable in her field and I havent heard anything but good reviews. I would like to know if someone is currently having treatment through the doctors at UAB and if so how long and do you think that this could be the best option for my mom. Thanks for all of the information that you can provide.

Regards, Melanie

Reply
08/10/2013 6:24pm

Melanie, you may want to go to the myeloma acor list serve and ask this same question, or ask the question on the Myeloma Beacon Forum. I have no data on UAB, however The Beacon lists them as one of their preferred myeloma cancer centers. That link is: http://www.myelomabeacon.com/resources/treatment-centers/2008/10/15/university-of-alabama-at-birmingham-comprehensive-cancer-center/

Good Luck and may God Bless your families myeloma journey/Gary

Reply
Lindsay
08/11/2013 5:28pm

Hi, my husband was just diagnosed with multiple myeloma . Would you happen to know how I can find a specialist for that in miami fl.? All his organs are good so far the doctor says we caught it on time, he has lesions in his skeletal in back, I'm trying to stay strong for him. If there is any information you can provide me with I would i would so appreciate it my email address is xxsmurfetexx@hotmail.com. Thank u so much

Reply
08/11/2013 7:37pm

Lindsay, you can go anywhere to get a second opinion, and get the treatment outline provided by this myeloma professional implemented by a Miami MM specialist. The listing of myeloma professionals with their survival statistics is provided on my website www.myelomasurvival.com. The only one that I know of in the Miami area is Dr. Stephen Nimer - Sylvester Comprehensive Cancer Center, University of Miami Health System, Miami, FL. Good luck and may God Bless your families myeloma journey. Gary

Reply
James
08/20/2013 8:17am

Hi, My mom 58 has been diagnosed with MM. She lives in Chesapeake Va Do you know of any good specialist MM doctors in that area? Please let me know.

Reply
08/20/2013 9:25am

James I do not know of a MM specialist in the Chesapeake area, however your mother can go to any on the list at link: http://www.myelomasurvival.com/myeloma-specialists-listing.html
and have that MM specialists plan implemented by a local hemotologist/oncologist. If a transplant is needed their are two CIBMTR transplant centers in your area. Go to the link:
http://www.cibmtr.org/About/WhoWeAre/Centers/Pages/index.aspx?country=us&state=Virginia

An internationally known transplant doctor is just 3 and 1/2 hours from you in Bethesda, MD.

C. Ola Landgren, MD - National Cancer Institute, Bethesda, MD

others you might consider:

Cristina Gasparetto, MD - Duke University Medical Center, Durham, NC

Luciano Costa, MD - Medical University of South Carolina, Charleston, South Carolina

Good Luck and may God Bless your families myeloma journey/Gary

Reply
megan
10/24/2013 12:50am

My mom was diagnosed with stage 3 multiple myeloma yesterday. She is 74 and healthy for the most part with 1kidne
I am 36 and her baby and she is looking to me for all the answers
Its just us and I don't know which direction to go first. She is supposed to start chemo Nov 7th. We are located in Valparaiso,in and she is seeing Dr.house a hemotologist for treatment. He mentioned chromosome 1 as the culprit. I'm






Reply
10/24/2013 10:03am

Megan, I am so sorry to hear about your moms recent diagnosis, and can see that you are on a mission of love. I find that the computer literate children often take on this role, mine did as well. I would get a second opinion from one of three excellent multiple myeloma specialists near you. Parameswaran Hari, MD (Medical College of Wisconsin, Milwaukee, Wisconsin), Andrzej Jakubowiak, MD (University of Chicago, Chicago, Illinois), or Attaya Suvannasankha, MD (Simon Cancer Center, Indiana University School of Medicine, Indianapolis, IN) You can find other listed at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html If you google Dr. House multiple myeloma Indiana you will find nothing, and I think that concerns me and should concern you as well. I am not that familiar with the chromosome 1 abnormality, however the more complex the disease the higher the need for a MM specialist. If you mom can not travel you can quickly get a second opinion from a specialist if you go to the web site: https://2nd.md/disease/multiplemyeloma Dr. Ravi Vij is exceptional.
For more information go to my web site www.myelomasurvival.com and visit my blog as well. May God Bless your families myeloma journey/Gary

Reply
barry draper
11/04/2013 6:14pm

I had my stem cell transplant Jan 2013. all has been well until two weeks ago, I now am having pains in the back and above my ribs.
Does this mean I am now out of remission and back to square one after such a short period of time.

Reply
11/05/2013 8:32am

Barry, What does your multiple myeloma specalist tell you? If your BMB is normal, and your light chain test is as well, and your M spike is low and stable, that would give you a good indication that all is well, and the pains are just the pains from getting older. A PET scan or MRI would be a good test to confirm activity if the above tests are not normal and increasing. If your doctor did not conduct these test find a multiple myeloma specialist and get the test done.

All MM patients are a little paranoid about any pains. I am 64 and have pain in my hip, left knee, back, and both shoulders, and I am in CR with a PET scan that show no bone involvement. But every new pain has me asking the same question that you just asked. Clean test is the only thing that make me feel secure again until I get the next pain. Good luck and may God Bless your myeloma journey

Reply
Wanda Suarez
11/18/2013 4:58am

It is 3:47 am and i have been researching about multiple myeloma. My brother in NY, age 54 was diagnosed with myeloma two days ago. It was out if a rutine blood work because he felt tierd and he was borderline anemic with high counts of protein that lead to more test and a bone marrow biopsy that came up with the diagnose. He has to go to a doctor tomorrow in NY called Tauseef Ahmed, but when i checked him out online he shows as an hematologyst but no mention of myelona specialist. I am calling my brother tomorrow, well, today really, and, suggest him to look for a doctor listes as specialist in myelona, does anybody knows or recommends any doctor or myelona center in new york. I saw a Ruben Niesvizky at Weill Cornell Medical Center. Pleas help he is to start treatment in about 7 hours and I want to be sure he gets a good start with the wright doctor. My gratutud,

Wanda

Reply
11/18/2013 9:32am

Wanda, I agree that getting a multiple myeloma specialist on your team is critical to improved outcomes. Dr. Ruben Niesvizky is one of them. Others are listed at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html Others include:

Sergio A. Giralt, MD - Memorial Sloan-Kettering Cancer Center, New York, NY(Dr, Grialt was Robin Roberts doctor)
Sundar Jagannath, MD - The Mount Sinai Medical Center, NY, NY
Amitabha Mazumder MD - NYU lngone Medical Center, New York, NY

If he can travel, Dr, Hari, Dr, Orlowski, Dr. Barlogi and Dr. Berenson are exceptional with great survival statistitics as noted on the home page of the web site www.myelomasurvival.com

Good Luck and may God Bless your families myeloma journey/Gary

Reply
Nav Arora
12/03/2013 1:15am

Hi Gary,

What a great service you are doing. Can't appreciate and thank you enough. My cousin in Portland, OR has his first MM blood test as positive. I am not very aware of MM and just started searching for help on the internet to know how serious it could be. I will share more details when I have them but it will be great help if you can suggest a couple of reputed MM specialists in the area.

Thank you so much and God bless you my friend.

Reply
12/03/2013 11:32am

Nav, Thank you for the find words, and I am so sorry to hear about your cousin, and I would be happy to help. You can find a list of Myeloma Specialists at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html
The specialist closest to you is William I. Bensinger, MD - Seattle Cancer Care Alliance(Fred Hutchinson Cancer Research Center), Seattle, Washington. To help in your cousins and your own early education process you may want to go to the link: http://www.myelomasurvival.com/1/post/2013/08/beat-the-multiple-myeloma-life-expectancy-prognosis-how-to-educate-yourself-byjenny-ahlstrom-and-gary-petersen.html

If he can travel, Dr, Hari, Dr, Orlowski, Dr. Barlogie and Dr. Berenson are exceptional with great survival statistitics as noted on the home page of the web site www.myelomasurvival.com

Good luck and may God Bless your families myeloma journey.

Reply
Debbie
02/13/2014 12:06pm

It's all bullshit you are going to die from MM my brother had it took him like a savage devil get your affairs in order is exactly what the doctors told him. He was treated at the Cleveland Clinic. RIP my dear brother!!!

Reply
Charles
03/28/2014 3:00pm

Gary,

Thank you for taking your precious time to answer everybodies questions. My father was late diagnosed with MM in '99. Repeated appointments due to chest and back pain with his primary for 5 months only led to the physician starting to lose his patience with my father for not heeding his advice to take it easy and stop re-aggravating the muscles he's pulled. Loosing 35lbs and sleeping sitting up on the couch, he was looking pretty bad when passing a familiar doctor in the hallway after another fruitless visit to his primary. Shocked at his state, the physician told me dad to go to the lab for a blood draw and then go staight to his office. Labs came back as dad having an 'M' spike. That day they did a bone plug, the next day we got the news. He was put on somekind of monthly chemo enfusion which didn't seem to stop the disease. A few months after they put him on thalidomide, which if I'm not mistaken would have made him part of the first trial, correct? He signed a paper promising not to get pregnant. But nothing was ever mentioned to us about this being a trial. The thalidomide actually seemed to work but he developed a strange condition. Whenever, and only, when he would eat, he'd produce 'huge volumes of clear fluid' that looked like saliva but having to be coughed up, yet his lungs sounded perfectly clear. It was to the point of interfering with him swallowing, the fluid coming out faster than he could get food down. So every meal consisted of maybe three bites. The doctors had no idea why. I became quite a chef in hopes of inducing him to take one or two more bites. They took him off the thalidomide a few months after the pain stopped but he continued to loose weight. His last year they said the disease had started up agian. He died skin and bones from kidney failure. From reading these posts I feel bad he wasn't offered dialysis, which i've spent the last 4 years with mom's home peritoneal and in-center hemo until she passed in january. Have you every heard of this kind of eating disorder in relation to the disease or treatment thereof?

Reply
Kat
05/11/2014 8:28pm

Hi Gary - I have been diagnosed with smoldering myeloma and am wondering if you know of a specialist in Calgary, Alberta, Canada. Thank you.

Reply
05/13/2014 6:18pm

Kat, I did some research and Dr. Nizar Bahlis of The Tom Baker Cancer Centre, Calgary meets all my criteria for a multiple myeloma specialist. I hope you find this of value in your myeloma journey. Gary

Reply
Kat
05/16/2014 11:19pm

Hi Gary. Thank you so much for doing the research and responding so quickly! Much appreciated.

Maro
07/16/2014 2:13am

Hello Gary.

Your work is much appreciated and gives hope to all those who read.

My mom was diagnosed with SMM, m-spike of 2.2g/DL and 50% BMP. No CRAB as of yet (very slight anemia 11.5, normal range above 12). Doctors said it is not necessarily myeloma related.

It is beleived that my mother has had this condition for over 2 years because her sed rate is at 135 and has been this high since over 2 years before diagnosis.

I have 2 questions:
1) does SMM necessarily progress to MM? some studies say yes and others say no. You state that it could take 5, 10, 15 or more years (would be great....). Is this really possible?

2) do you know any good myeloma specialists in Lyon, France?

Many thanks again for your help and contribution to the myeloma patients.

Maro

Reply
07/16/2014 9:21am

Maro, I have found a few references on time to progression for smoldering myeloma. Mayo did an analysis in 2007 and found the average time to progression was 5 years however some did not progress for 10 to 15 years.

link:http://www.medpagetoday.com/HematologyOncology/Hematology/5981

Some additional information about smoldering myeloma published by Dr. Lacy of Mayo is at the link: http://www.managingmyeloma.com/knowledge-center/faq-library/746-what-is-smoldering-myeloma

A great facebook site for just smoldering is published at the link: https://www.facebook.com/groups/1400814483494792/

I do not know a myeloma specialist in Lyon, however you can get an opinion from a world renowned doctor Philippe Moreau, MD - University Hospital, Nantes, France and have a local hemotologist oncologist implement the plan. That is what I would do if I lived in France. The Hopital Edouard Herriot, CHRU Lyon is a CIBMTR center and probably has someone there who has treated a number of myeloma patients.

The last point is that recent data suggests that smoldering myeloma with high risk features(15% of patients) will advance faster than low risk patients. So you should find out if your wife has high risk features. Good Luck and God Bless your families myeloma journey. Hopefully your wife won't have to worry about treatment for many many years. Best Regards/Gary Petersen

Reply
Ruvie
08/21/2014 3:42am

Hello Gary,

My mother was diagnosed with Multiple Myeloma last week. But I don't know the stage. According to her reports creatinine level is bit high.but Kedneys are normal. bone marrow test indicates there are more than 80% plasma cells. She is still 50 years old,from sri lanka.
So, please let me know, will it be serious?
Is there any chance to keep her smiling for a long time?

Reply



Leave a Reply