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    • Life With Multiple Myeloma
    • Mar 11, 2014

    Why Do People Beat the Average Multiple Myeloma Life Expectancy Prognosis? Or How To Improve Your Myeloma Survival Rate!

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To learn more about how you can lengthen your prognosis with multiple myeloma, join us at www.healthtree.org – a site where you can find treatment options, clinical trials and contribute your myeloma story to accelerate a cure. 

Multiple Myeloma Prognosis

I updated this post more than two years ago, and it has been very helpful to many in the myeloma patient community  One thing has become very clear to me, the pace of change and progress for myeloma has become exponential.   This is a very good thing!  We have had 4 drugs approved for myeloma since 2015 (two are new classes of drugs).

In this period, myeloma approvals have been 13 times greater than the average cancer. I can only say thank you to the researchers, drug companies, myeloma specialists, clinical trial patients, and advocates for such an outstanding achievement.  Nothing less than an ALL STAR performance.  In addition, the pipeline is packed with new drugs, CAR T, checkpoint inhibitors, MIL’s and initiatives to treat as early as practical.  As a patient advocate I find it nearly impossible to keep up with the avalanche of new data. I can not see how anyone but a skilled myeloma specialist can keep up to date with this rapid pace of change.   But Dr. Lonial, a world class myeloma specialist from Emory University, says it best: click here to view his advice.

In the last two years, the average life expectancy has gone from 4 years to 5.5. years, according to The SEER (Surveillance, Epidemiology, and End Results) data for multiple myeloma published in April of 2017 by the National Cancer Institute.  This is outstanding progress in that life expectancy had been stagnant at 4 years for 5 consecutive years.   Some patients 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 average for myeloma patients overall was about 3 years. Now, I am beyond thankful to be an 11 & 1/2 year survivor.   I believe there are three critical components to beating the odds: Part one is early diagnosis and treatment before end organ damage.  Part two is disease dependent, or the hand that you were dealt.  Part three is related to the level of care that is available to you.  For more information on survival rates and life expectancy click here.

News: Early Detection for Multiple Myeloma Announced

Part 1 – Early Diagnosis and Treatment

If you are lucky enough to have a general practitioner who picks up high protein in the blood and finds the disease early while it is smoldering, or stage one, you have won the Myeloma Lottery.  Life expectancy of stage one disease is 3 times greater than if you have been found in stage three.  Treatment guidelines were published in November of 2014 with the express purpose of finding and treating the disease before it has progressed and  causes end organ failure.  A National Institute of health article states the intent of this clearly;

“The concept of initiating therapy after end organ damage is analogous to initiating treatment after the development of metastatic cancer in solid tumors. Indeed, screening, early detection and intervention have played a large part in the major curative advances that have been achieved in solid tumors whereas metastatic cancer remains incurable in these same malignancies. It is, therefore, not surprising that MM remains incurable, in spite of all the advances in therapeutic interventions. Could it be because we are waiting too long – until metastatic myeloma occurs – to treat our patients? In such a condition, watchful waiting may actually be more harmful to the patient than early intervention.”

To read the whole article click here!

If you are one of the lucky ones who are found in the early stages of active myeloma or smoldering myeloma, you will have the luxury of time to understand the treatment options, find a myeloma specialist here (a must) or here, and plan to confront your disease before permanent end organ damage.  Dr. Rajkumar of Mayo Clinic did a wonderful job of explaining  the new criteria for myeloma diagnosis, and you can read it if you click here.  Dr. Irene Ghobrial is doing some great work to follow MGUS and smoldering stages of the disease, to  develop treatments to cure, or at least prevent end organ damage.  Click here to view a myeloma crowd interview with Dr. Ghobrial on the subject.  Just as a note, the country of Iceland is testing all of its adult population over 40 to screen for MGUS, Smoldering, and active myeloma.  They call it iStopMM, a clinical trial supported by the IMF(International Myeloma Foundation).  This is a future I pray we will all see where we could cost effectively find MM early and treat it before end organ damage.  Click here or here to learn more about iStop MM.

Unfortunately,  Myeloma UK has reported that 1 in 5 myeloma patients die within the first two months of diagnosis, and that it takes nearly a year from the first symptoms to diagnosis for 25% of newly diagnosed patients.  Dr. Morgan of UAMS said it best when he outlined his thoughts on the subject of awareness and delayed diagnosis. He believes the fact that it takes 3 to 6 months and more often 6 months from first symptoms to diagnosis is a bit of a scandal.   To make real inroads in the myeloma we need to get it diagnosed early before we have organ involvement.  We need to make family doctors and family practitioners more aware of the disease.  They should do M spike and light chain tests on patients.  This makes a lot of sense to Dr. Morgan.  It is really tragic when patients develop renal failure when awareness of myeloma by a General Practitioner might have allowed the patient to get a consult or treatment from a myeloma specialist.  A myeloma specialist is critical to a patient’s long term care and survival.  It is a disease that does not come on overnight but is years in the making.  Patient organizations can make a difference.   Like with Smoldering, there might be a non toxic and safe treatment for MGUS which would be a chemo prevention program.  He believe the future of Myeloma will be to get earlier diagnosis, safe treatments, chemo prevention strategy, regular screening for para protein, and early intervention.  This is the future we are striving to achieve.

I have kidney damage, a good friend of mine has debilitating bone pain, others collapsed vertebrae, one suffers from a myeloma caused stroke, and many have died from delayed diagnosis.   All of which might have been prevented with a simple test of light chains and M spike costing under $150 without insurance, and no cost if covered by insurance and referred by a General Practitioner.  It is what could be!

Part 2 – 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 if you click here.

Some people may have an active disease but do not have any of the negative prognostic indicators.  These indicators 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 like GEP(gene expression profiling) to determine if you have any of these negative prognostic indicators.  If you are considered high risk(15% of patients) , the life expectancy is less than half of the current average, or just 2 years.  You can read more about high risk multiple myeloma if you click here.

The sensitivity of the disease to treatment is also important.  My myeloma seemed to be very sensitive to the combination of Cytoxan, Thalomid and Dexamethasone, a treatment that 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.

And of course if the average is 5.5 years, half of the people will invariably beat the average.

Part 3  –  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, Medicare has a Compassionate Allowance Program where you can be approved in less than two weeks if you go to your local office and can show that you will not live without care.    To see the program click here.  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 which can provide assistance  listed on the bottom of the home page, to view click here.

Multiple Myeloma is a rare blood cancer, so many hematologist/oncologists may not see one patient in a year.  As a result not all oncologists or hematologists are the same. However, some are very skilled and experienced with Multiple Myeloma and have treated many myeloma patients. The data shows these myeloma specialists provide an average life expectancy of 10+ years or more, compared to the average which is at 5.5 years.

For a listing of these exceptional specialists click here or for a more extensive list without survival history just click here. 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.   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.   You would choose a brain surgeon over any other surgeon if you had a brain tumor, why would you not do the same for myeloma? Find out how to find a myeloma specialist by clicking here or here

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 drugs or treatments like CAR T, MILs, Venetoclax or Selinexor, which are not approved  treatments. But these experts can get approval for initial therapy through clinical trials or other programs. Or some specialists can use drugs that are only approved for relapse or secondary therapy options (Daratumumab,  Ixazomib, Krypolis and Pomalyst), and obtain approval to use them for newly diagnosed patients.   They also have access to the best clinical trials like KRDD (Krypolis, Revlimid, Darzalex, & dexamethasone)   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. Because you need a significant infrastructure to conduct clinical trials at your facility and they cost the facility $15,000 per patient, few local oncologists have access to clinical trials.  Sometimes it is who you know!

Myeloma patients seldom die from myeloma, they die from the complications from myeloma.    The number one complication is pneumonia, and others include infections, kidney failure, anemia, etc.  This, therefore, brings me to the realization that supportive care for the treatment of the many complications of this disease may just be as important as the cancer treatment itself.  Or a great Defense(supportive care) is as important as the Offense(cancer therapy).   MD Anderson and Mayo Clinic emphasize supportive care in their programs, UAMS actually has a Director of Supportive Care in their myeloma program, and Dr. Elias Anaissie, the Director of the Myeloma Program at the University of Cincinnati Cancer Center, has an extensive background in supportive care.  Dr. Anaissie has published a well written example of an exceptional supportive care model. You can read this publication if you click here. To read my blog post on supportive care click here.

I also think the quality of care that you receive can 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. To find out how to get educated about multiple myeloma  click here.  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 if you click here.

With 30,000 new cases of multiple myeloma in the USA, we can estimate the total number of patients in just the USA at 165,000. If we can move the average life expectancy from 5.5 years to 11 years by having myeloma specialists guide your care, we could save 165,000 times 5.5, or 907,500 years of LIFE.  Many times more if we include the entire world.  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 click here and you can follow me on twitter at: https://twitter.com/grpetersen1

 

About Author

Gary Petersen

Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1

92 Comments

  1. Joan Smith March 14, 2014 at 2:40 am

    As a person with myeloma in the UK I am so glad that care here is not dependent on insurance. I was diagnosed 8 years ago at the age of 54. I had a stem cell transplant but the myeloma affected my kidneys and I have been on peritoneal dialysis for the last 5 years. The myeloma itself has been in remission for 7 years.

    I have had superb care and I think that has helped. I was diagnosed quickly too and think that us very important. I also think that a positive attitude helps.

    I have lost over 5 inches in height due to collapsed vertebrae but despite this I do tai chi 3 times a week and Zumba too. I am one if the lucky ones but continue to be positive about life and live it to the full.

    Joan

    • Gary Petersen March 14, 2014 at 6:48 am

      Joan you are just remarkable!!! And a miracle as well. When I was diagnosed 8 years ago, I remember reading an article that read something like “Of the 850 dialysis dependent myeloma patients the average life expectancy was 3 months……” You and are are beating the odds! So Zumba and tai chi, what next ski diving?

      Your point about being diagnosed early is SO, SO important, because Myeloma UK says 1 in 5 patients die in the first 60 days. They also say 97% of the people in the UK have never heard of myeloma. Somehow we need to get the message out, just like Katie Couric did with colon cancer. We need a Katie to help improve awareness and SAVE LIFE.

      Way to go Joan/Gary Petersen

    • Mark Holden August 27, 2014 at 1:20 am

      Joan
      I was diagnosed this summer at the age of 52. I have been reasonably optimistic but the constant back pain has recently got me down. It sounds like you had a similar problem with your vertebrae. Physio doesn’t seem to be helping(exercises to strengthen my core) but I need to do something. I see you are now able to do Zumba etc. how did you get to that stage?
      Mark

    • Alice August 12, 2017 at 11:46 pm

      where you multiple myeloma treat the disease it’s my brother.?

    • Bill Gould December 26, 2017 at 7:44 pm

      Ms. Smith, have your doctors suggested kyphoplasty for your collapsed vertebrae? It’s a day-surgery procedure that’s done under general anesthesia, and takes about an hour. The relief I experienced afterward was immediate, and has allowed me to live relatively pain-free for nearly 11 months now. I can recommend it as an option well worth exploring. Best of luck to you.

      Bill in Houston, Texas

  2. ed hine April 2, 2014 at 9:23 am

    80 in july,it’s been a year sense being found to have the disease,in remisision now & without a doubt my support group have been the main reason why i can sit and write this,Annette,Sheri Steve ,Kathy,& Nate

    • Gary Petersen April 3, 2014 at 7:19 am

      Ed, thank you for your comment. Especially for the newly diagnosed, the knowledge, support, experience, and caring nature of a Support Group can be a LIFE SAVER. In our case “KNOWLEDGE IS LIFE!” Gary

    • Louis February 21, 2018 at 10:23 pm

      Hi
      What treatment did you do to go in remission. Just found out I have it and the doctors are offering chemotherapy and I do not want chemo. Don’t know what to do!!

      • Gary Petersen
        Gary Petersen February 26, 2018 at 6:49 pm

        Louis, do not be afraid of chemotherapy! I had Cytoxin, Thalamid, and dex first and then VTd-ACE and two stem cell transplants. The best way to insure you have the best care is to get an opinion from a multiple myeloma specialist. Mayo has a good template for treatment at http://www.mSmart.org and it is all chemo based, and is your best chance for long term survival.

  3. Linda Palmer September 3, 2014 at 8:55 pm

    I am 68 years old, and was just diagnosed with Aggressive Smoldering Multiple Myeloma with a Lambda IGA score of 421 yesterday. I could be getting the names wrong, as all this is so new to me and my family and we got stuck at the doctor’s words of “incurable” and “aggressive”, and are all shocked as cancer does not run in our family…heart disease, but not cancer! I have been battling what they thought was Peripheral Neuropathy for over 8 years that has been very debilitating, all the time telling them that I knew this was much more as the pain, especially this past year in my lower back, hips, and shoulders, has been almost unbearable. I have been to primary care doctors, fibromyalgia specialists, neurologists, rheumatologists, pain management specialists, physical therapists, and too many tests, scans, etc., to even count, and still no one knew for sure what this was until my rheumatologist realized that my white blood cell count has been high off and on over the last 8 years and referred me to Hemo/Oncology where they did a batch of labs, urines, and a bone marrow biopsy. They are conferring with other specialists to decide whether to begin treatment now, or to watch and wait with visits/labs every 2-3 months. I have always been proactive about my health, so I want to do everything I can, ask the right questions, and keep on the doctors to assure that I am getting the proper care that’s available through Kaiser Permanente. I just stumbled across this site as I have been reading all I can about the disease, progression, etc., and wanted to thank each of you for your encouraging posts that gives hope especially to us who are just beginning this unknown journey. Blessings to you all.

    • Gary Petersen
      Gary Petersen September 4, 2014 at 4:38 pm

      Linda, many of us believe we have had MGUS, smoldered, or had active myeloma for a long time prior to diagnosis. It is helpful for the patient to find out in the MGUS, or smoldering phase, because it does give you time to be your own best advocate, find a myeloma specialist for your team, and educate yourself about all of the options. Dana Holmes has a Facebook Page for smoldering patients https://www.facebook.com/dana.holmes.5895?fref=nf and this site has a post on smoldering myeloma which you might also like to read. https://www.myelomacrowd.org//smoldering-asymptomatic-myeloma-or-active-multiple-myeloma-understanding-the-crucial-difference/ Good Luck and may God Bless your myeloma journey/Gary Petersen

      • Linda October 14, 2014 at 9:42 pm

        Gary,

        Thank you so very much for the information and links. Dana’s Facebook page has so much good information, along with the other link, which is very helpful in preparing for my Oncology appointment next week to discuss beginning treatment of REVLlMlD and DEXAMETHAS0NE. We are all still in shock, as I am sure everyone that first hears or walks into a Cancer Center feels when they get their diagnosis. Thank you for taking time for all of us who have so many questions : )

        Blessings,

        Linda

    • flor nesmith March 11, 2015 at 2:09 pm

      My husband was diagnosed with multiple myeloma last May, 2014.. We were told “not to worry, it is just in a smouldering stage, and that treatment is not necessary”. He advised us to have bloodwork and urine sample test every three months, which he did.. Prior to that, he figured in an automobile accident, that was in 2009, and because of that he had to see doctors too, neurologist, pain doctors, and psychiatrist.. He had been in constant pain since the accident, and he started to feel that tingling, sometimes, he describes as thousand ants crawling or tickling his feet and escalated to burning feeling as if his feet are being roasted, a year and a half ago.. He had changed his neurologist three times, because we feel that the first two neurologist is not believing there was something wrong with him.. The last neurologist, after having a series of test, referred him to an oncologist, that told us “not to worry, cancer is on a smoldering stage”. Like i said, we religiously followed the oncologist’s advice of lab work every three months from the time he gave the diagnosis, last May.. My husband at that time is having diffulty walking already, but could still walk. Last December, 2014, after christmas he lost his ability to walk, and soon after his ability to get out of bed. January 7, this year, I had to make an appointment to the oncologist for the result of his last bloodwork and urine sample done last December, and that’s when i was told that his cancer has gone bad.. He immediately told me to bring him to the hospital because he is so weak and that his body might not take the chemo treatment.. i was shocked… How come we were not given sny warning sign as to when to begin seeking treatment! After 6 days in the hospital my husband begged me to bring him home snd he resolved to seek another oncologist, which we did, but , i guess, it was already to late for him to do anything, and adviced us to get him into a Hospice Care at home… Now we are just praying, and waiting for a miracle to happen just to prolong his life..He just turned 57 this February, and he said he will beat this cancer with Jesus.. All the while that he was complaing about his pains neck, back and legs, we thought it was becsuse od neurological problems, but now it seems that it really had something to do with the cancer.. i just wished we had seen the right doctor sooner..

      • Gary Petersen
        Gary Petersen March 14, 2015 at 10:48 am

        So sorry to hear that your families myeloma has been so, so rocky. To think it takes 5 years from 1st symptoms to diagnosis is JUST CRIMINAL. One of the major signs of myeloma is bone pain. If a PET scan and MRI have not been taken they should be, because clasped vertebrae resulting in spinal problems and paralysis is not uncommon as well. If you do not have a myeloma specialist who has seen in excess of 100 patients per year find one. If the MM is treated it often will resolve many of the bone issues. I remember a patient I met at UAMS who was unable to walk, had over 200 hot spots on her PET scan and was told to get her affairs in order because she did not have long to live. When I met her after treatment she was walking, looked great, was in CR and cancer free, and all of her bone lesions had been resolved. She chose life not hospice. Good luck and God Bless your families myeloma journey.

      • Louis Houston ll son ofthe living God January 24, 2018 at 5:20 am

        Jesus died on the cross for our sins, he suffered and bled so that we may be healed according to the faith working in that individual and the will of God! When Jesus Christ rose from the dead he did so with power over death and the grave. When Jesus ascended to Heaven he left us the Holy Ghost which is our comforter and in our comforter the Holy Ghost we have power as it is written through the Holy Ghost that lives in US! As we accept Jesus Christ into our life and believe that he died and rose again for our sins and ask him to forgive us of our sins and our sinfull thoughts and live according to the word of God to the very best of our ability .I am 42. I was diagnosed with multiple myeloma in May 2000 17 on the 13th since then I have taken multiple chemotherapy treatments. There was a time when I went into remission for a week and due to alcohol I belive I came out of remission and was told that I had aggressive multiple mmyeloma. In which case sugar is no good for any cancer patient and in which case alcohol is mainly sugar. No more alcohol for me! I claim the victory over death and life in this diagnosis. In approximately 6 hours I gave over 22 million stem cells. And tomorrow January 24th 2018 I will receive my first stem cell transplant. In efforts to fight a good fight and beat the life expectancy for this disease. I can do all things through Christ that strengthens me and so can you with knowledge wisdom and understanding. May God bless, keep and shed his grace on all who believe in him with or without cancer or any disease or virus. We must pray without doubt and live without fear in the name of Jesus and trust God to work miraculous and wonderful miracles in our life. God has never changed the only thing that changes is our circumstances.# we stay blessed!! May God bless all who believe. Bless the name of the Lord God. Thank you Jesus for all that you’ve done and all that you’re doing in my life and many others. Amen.

  4. Janelle Gawarecki September 14, 2014 at 8:08 am

    Hello. My very special aunt, who is in her late 70s, was just diagnosed with multiple myeloma and we just received the news. I do not have details as to what type it is, etc but want to find the best information available regarding this disease. I am also interested in seeing if I would be suitable for a stem cell donor for her as well if something like that would be needed for her treatment. We are not blood related. Any information would be very much appreciated. Thank you so much and God bless all of you who are dealing with this disease.

    Janelle Gawarecki

  5. Janelle Gawarecki October 1, 2014 at 3:39 pm

    Thank you sooo much! I will be sure to check out these websites.

  6. Stuart October 15, 2014 at 10:59 am

    Hi folks,

    Thank you so much for Your positive attitudes. I am 49 and was diagnosed with multiple myleoma in January. To be totally honest I’m terrified. I have so many things I want and need to do including seeing my children through their education and settled with families. I am also petrified by what life now has in store for me. It’s a journey I do not want but fate has decided. I haven’t really spoken to others with the condition as I had a bad experience in outpatients when a sufferer decided it was good to tell me about his journey.
    I found this blog/ website informative without the need to terrify. Thanks

    • Gary Petersen
      Gary Petersen November 1, 2014 at 6:42 am

      Stuart, thank you for your supportive remarks. We try to be an information source from a group of patient advocates. We hope that we can speed up the new patients learning curve, and keep on top of the very fast moving changes in care and treatment. We are all terrified at diagnosis, and with knowledge the fear will subside and the goal becomes “What do I do to beat this thing”. Becoming your own best advocate, and getting a skilled multiple myeloma specialist on your team are two essential elements to improved outcomes. Good luck and God Bless your families myeloma journey. Gary

  7. James Mays jr December 19, 2014 at 3:16 pm

    I am 49 years old, i am an interior firefighter and a lieutenant for the county HazMat team. I also had a flourishing career in Propane. Very healthy, I could hang with 20 year olds with 50 pounds of fire gear on and crawling around in a house fire. In June of this year I received life changing news. I was experiencing back pain for several months. I went to my personal doctor that sent me for an MRI. They found some abnormality in my bone marrow. They then sent me to our local cancer institute. They found that there was a cancer tumor on my T-12. There was virtually no vertebrae left. They the did a bone marrow biopsy and found that I had multiple myeloma. I then was introduced to the most professional team of doctors and oncologist that wanted to treat this as aggressively as possible They offered me to be part of a clinical study which included VAlCADE, DEXAMETHAS0NE, and REVLlMlD. I just went through a bone marrow transplant on December 3rd and was discharged on the 18th. I was producing 70% protein from my bone marrow when I was first diagnosed. Right now I am at less than 5%. The transplant was a success! I have two more cycles of VAlCADE to go through, but I believe my success is going to be the aggressive treatment, a very positive attitude, and a support group that is accessible, knowledgeable, (from taking caregiver classes), and willing to be there for me 24 hours a day….And the most important thing is that I have is a wife that loves me very much and is there by my side through the entire process. She understands the things that I don’t and that need to be taken care of. I feel fantastic, and am very positive I will die from getting hit by a bus rather than die from my cancer!!

    • Gary Petersen
      Gary Petersen December 30, 2014 at 7:10 pm

      James, I hope you had a wonderful holiday. Sounds like you have the right attitude and I am glad you found a team that you are happy with. At a young 49 the statistics would say that you will live twice as long as the average myeloma patient, and with some of the new drugs under development you have a great chance of outliving the cure and dying of old age. A loving wife and caregiver are a blessing, and I share the same wonderful gift of a loving caregiver wife.

    • Benito Herrera September 30, 2017 at 9:23 pm

      My Benito I was diagnose in June 2015 I took radiation and chemo and did a bone marrow transplant August 2nd I’m in full remission just keep your faith in God God is awesome and keep positive. If you ever need somebody to talk to again my name is Benito and my phone number is 214 924 1561 may God bless you and your family.

  8. Anthony March 23, 2015 at 9:11 pm

    Hi, my name is Anthony and my beautiful wife Claudia was diagnosed with smouldering myeloma nearly three years ago at the age of 55. Despite having blood tests every three months to monitor her, the results have remained stable and there have been no other symptoms noted. Her specialist has sometimes decided not to see her for six months as he remains quietly confident with her current stability, but still insists on her have her three-monthly blood tests. Since her diagnosis, our attitude to life has changed significantly. We are grateful for every day, we do our best to trust in God and simply leave things in His hand. We endeavour to enjoy each moment and when we have the opportunity for a holiday, we grab it. I suppose that how we should live life anyway, but when you are faced with your own or your loved one’s sense of mortality, you don’t procrastinate. I am frightened, not for myself, but for my wife as I do not want her to suffer. I simply want her to have the joy of living a quiet, healthy peaceful life as she deserves….but despite the burden this brings to both of us, I will never lose faith and know somehow that God will guide us through it. I wish all those who visit this website sincere and heartfelt good wishes as you take each day to deal with your challenges. God bless.

    • Gary Petersen
      Gary Petersen March 24, 2015 at 2:23 pm

      Anthony, I too feel I have been blessed by God. At diagnosis I had dialysis dependent kidney failure which at the time had a 3 month life expectancy. I am now at 9 years in CR. Sometimes when you know you will soon be closer to God you do just that, you get closer to God. I know it is hard to believe, but smoldering can be a good thing and not become full blown myeloma for 10 or20 years. By then I would hope and pray we have a cure for all myeloma. I know this, that I did not want another day at my work, I just wanted more quality time with my family, because every minute became so much more valuable. You take good care of your Claudia, like my Anita takes great care of me. And I know how special a loving, caring and forgiving caregiver can be, without which the patient would be lost and feel helpless. Anthony you are SPECIAL! May God continue to Bless your families myeloma journey. Gary

      • Anthony March 24, 2015 at 5:33 pm

        Your kind words are an inspiration Gary. For a person who has been faced with such challenges but continues to remain positive and hopeful just helps to spur me on. In front of my wife I have always endeavoured to douse the subject and outwardly remain calm and kind of casual so as not to over worry her (she tends to be a natural worrier anyway), but inside of me it’s a different story and it is not easy to talk to family and friends who may be sympathetic but really don’t understand. So to have a person such as yourself and others who face similar challenges contributing to this website so bravely and positively truly lifts my spirits and provides so much hope. Thankyou once again to you and all the others. I can see now how God has guardian angels in many forms….

  9. Marty malaga October 24, 2015 at 5:44 pm

    I was diagnosed 7 years ago. Rev/Dex lasted for almost 6 of those years, needed to add CARFILZ0MlB to the mix and except for the kappa light chains ,all my numbers are now in range,m spike at 0.26 and my oncologist insists I am heading toward REMISSION, a word I have not heard for the past 7 years!Light chains take a little longer to leave your system,so hopefully in the next few months REMISSION will be achieved .

    • Gary Petersen
      Gary Petersen October 25, 2015 at 11:05 am

      Marty, You have already beaten the odds so I commend you. There have been great results with KRd with and without SCT and maintenance, so it is good to hear you are on the way to Remission, and hopefully sCR and MRD negative. Good luck and may God Bless your myeloma journey. Gary Petersen editor@myelomasurvival.com

  10. Scott November 11, 2015 at 7:42 pm

    Hello, my name is Scott, I’m 44 years old and was diagnosed with MM in July 2015. My scans showed small lesions on every bone in my body and my BM biopsy showed a significant number of plasma cells. I just finished four cycles of CARFILZ0MlB/REVLlMlD/DEX and was told two days ago that I’ve achieved complete remission. There is no evidence of disease in my serum, urine, or bone marrow. The treatment plan has not changed and the plan is to do the auto transplant in late Nov/early Dec. I’ve tried to find research on whether or not a “wait and see” approach is reasonable given my CR instead of undergoing the transplant. I’ve found that research shows better long term survival from patients who have achieved at least a partial response to the inductive therapy but no info on risk/reward if CR is achieved prior to transplant. I’ve been in really good health otherwise because of diet and exercise. It just seems counter intuitive to undergo such an intense therapy to kill a bunch of bad cells that are not there. Thank you very much for your thoughts and time.

    • Gary Petersen
      Gary Petersen November 14, 2015 at 11:38 am

      Scott, you are asking the same question that I had 9 years ago when I went into CR with CytoxinTD. I was told by my doctor that CR means complete response and not complete remission, and based on the limited sensitivity of the test they can not detect disease in the bone marrow, and urine but in still may be present. If you are in CR you still may have millions of myeloma cells in your bone marrow and bones. Improved testing has allowed improved accuracy of measurement to which they then call sCR or stringent complete response. This is still not good enough to detect very small quantities of malignant cells. The newest test is MRD or minimum residual disease which if using 8 color flow cytometry is the most sensitive, but still has yet to be proven to confirm all myeloma is gone. I have been MRD negative for two years. You mention you have had lytic lesions on your bones, and my doctor believes myeloma cells hide in these lesions and therefor these lesions must be resolved, healed, and then confirmed as resolved by PET and MRI scans. There also is a belief that the more lesions you have the harder it is to maintain the CR status. Your doctor should be doing MRD tests and PET scans to confirm the depth of response of your treatment. Your treatment of KRd is good, but it has been proven that KRD with transplant is better. To better understand the testing

      Good luck and may God Bless your myeloma journey/Gary

  11. smriti November 22, 2015 at 12:02 pm

    hello my mum is suffering from multiple myeloma with 10% -12%of plasma cell, she is now 75 yrs old also suffering from kidney failurewith creatine level 3.5before detecting multiple myeloma 2months back and now after dr treating her cretine level raised to 4.7, i m worry abt her kidney together with the multiple myeloma she acquired 3 months back how can i help her , does she can stay away frm the medicines she started at this level? do awaiting for ur suggestion

  12. Voncile Davis November 30, 2015 at 6:48 pm

    I have just found this site and I have enjoyed reading all the info on MM. I am a 74 year old female and have crohns disease also. I had a regular colonoscopy in Aug. 2015 and it showed some inflammation in the crohns so my primary doctor scheduled a CT scan and it showed two tumors on my lower back. From that point we did an MRI and a bone marrow biopsy and they found the MM that way. I finished 22 radiation treatments and have started revlimid and decadron (name is now changed) on Nov. 23. I am going to Emory Cancer Center in Atlanta on Friday for a second opinion because they are MM specialists. I am also considering another opinion at Cancer Treatment Center of America in Atlanta. Any information on my situation would be greatly appreciated. I am a God fearing and God loving person with a good attitude and I don’t like the thought of leaving my grandchildren, children and my dear husband. We’ve been married for 52 years and we are a retired military family and have had a wonderful life but I love life and am looking forward to many more years. We are now poultry farmers and love it.

  13. Nora February 11, 2017 at 12:51 am

    I’m trying to find the list of myeloma specialist in Southern California. Can you help me?

  14. Niveditha April 7, 2017 at 12:52 am

    Hi,
    My mother has been diagnosed with MM on 2014. Our took BORTENATE and LENALlD0MlDE 10 mg as medicine, for these three years. But those drugs has become resistant so her kappa lambda ratio are going high. Now doctor has prescribed DARATHAMUMB. Can I get any reviews about this medicine, as its new in India.

  15. Mark May 4, 2017 at 5:54 am

    Hi

    My name is Mark i live in South Africa

    I was diagnosed in Dec of 2005 with Multiple Myeloma i had 4 cycles of iv Chemo (6 months) then i had 2 stem cell transplants, i was in remission for 4 years & since my replapse in 2010 i started on Thalidomide which did nor work for me

    My Dr switched me to Endoxan, i am now on 8 Endoxan & 200mg Pulmison for 7 days every 8 weeks

    My M Protein count is 4

    I account my good life to the right positive attitude and exercise followed by a good diet

    Regards
    Mark

  16. freddie May 19, 2017 at 5:12 pm

    Dear Gary,
    my sister had been in remission for 4 years and ever since then i have lived with so much fear that if it returned like so many cancers it was a death sentence…well it has returned but by what i am reading on your blogs i have found so much inspiration in you and all of these blessed survivors..from the bottom of my heart and the depths of my soul i want to thank you for giving me hope when i needed it the most…
    peace and blessings to you and yours…
    your friend,
    freddie

  17. Gary Petersen
    Gary Petersen May 19, 2017 at 7:59 pm

    Freddie, Thank you for the kind words, and I am so happy you have found reasons for hope. Often a 4 year remission means your sisters disease is low risk. With the oversight of your sisters treatment by a myeloma specialist she just may continue to be in your life for a very long time. Goog luck and may God Bless your families myeloma journey/Gary Petersen

  18. Kim June 5, 2017 at 6:34 pm

    My 79 year old mother was just diagnosed today. I am trying to find out all that I can. Her doctor has suggested going for a second opinion, but other than that has said that they are just in a monitoring phase right now??? My mother said he used the word smoldering, and she knows nothing about this disease. So I am assuming he told her it was smoldering myeloma. I just want to find out all that I can so I can direct her in the right direction. She lives in a small town, so I would like to find that list you mentioned for her second opinion. The reason it was found was because she kept complaining about fatigue so her regular doctor had blood work done that showed elevated levels of something (she wasn’t sure) which led him to send her to an oncologist/hematologist.

    And just in the little bit of research I’ve done, I am wondering if this is something I need to be concerned about? Blood work that I have had in the past shows low levels of vitamin D and I have also taken large doses of prednisone in the past (both show up as risk factors on other sites)

  19. Gary Petersen June 9, 2017 at 7:25 am

    Kim, the list you ask about is at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html. There are several lists including one from myeloma crowd. A second opinion from a myeloma specialist is a must have! The definition of smoldering has changed and many new clinical trials for high risk smoldering patients are now available which show early treatment increases survival. If low risk, the current standard of care is to watch and wait. Good luck and God Bless your families myeloma journey/Gary

  20. Gerri morales July 2, 2017 at 12:32 am

    This has been very informative,I have just been diagnosed with mm and know very little about it.My Dr. Said I was at 1.6 What does that mean? I have to go for a pet scan of my bones next to look for holes in my bones.Do insurance companies pay for you to have a second opinion?Help with some of these questions would be greatly appreciated.II am trying to learn as much as I can about my diagnosis.Thank you all so much and God Bless all of you🙏

    • Jenny A
      Jenny A July 6, 2017 at 7:11 am

      We have no idea what 1.6 means. Typically you will be diagnosed with a stage (for example Stage I, II or III) according to the International Staging System guidelines. You should definitely get a second opinion from a myeloma specialist. We have a directory here: https://www.myelomacrowd.org/myeloma-directory/. You will need to check with your health insurance company, but it should be covered because these doctors can be the primary source of your care plan, then you can get local care for infusions, etc. Gerri, please check out this site. There is an amazing amount of content here and it will help you get up to speed more quickly so you can be your best advocate.

  21. PK Singh July 6, 2017 at 12:39 pm

    I am PK Singh (age 63 years), from Kolkata, India, with MM since May 2016. As on 12th June 2017 Patho datas are: Micro globulin 1.8, Conc. of M-band 50 mg/dl, Haemoglobulin 11.2 and Calcium 9.0. Medicine at present are : LENALlD0MlDE 15mg and DEXAMETHAS0NE 20 mg. Present problems are tingling sensation on foot, mild pain on lower back, occasional giddiness, fatigue ( walk daily 1.5 km with some rest ). So far Drs have not advised stem cell transplantation.
    I want to know that with or without stem cell transplantation, what is the life in no. of years from now, with or without availing plantation , even though recommended by Dr, as availing transplantation is remote due to procedural delay at various stages and long waiting list of patients in the hospital.

    • Jenny A
      Jenny A July 7, 2017 at 8:05 pm

      PK, there is no way of telling how long you will live with or without the transplant. There are myeloma patients who have been on minimal therapy for over 20 years and some that don’t respond well. It depends a lot on the nature of your myeloma – the genetic features and the aggressiveness. Most US doctors are using triplet combinations adding a proteasome inhibitor (B0RTEZ0MlB, CARFILZ0MlB or IXAZ0MlB) to the len/dex combo that you are on. If you are able to have a stem cell transplant, many studies suggest that it does provide better outcomes. I would suggest making sure that your doctor runs the FISH (Fluorescence in Situ Hybridization) test using the myeloma probes. This should help tell you if you have any unique genetic features where more is known about the risk level of that particular type. Best wishes to you.

  22. Ramona villarreal July 20, 2017 at 10:56 pm

    Hi, i am a 77 years old and living with mm for thr last 13 years. I am now in my 3rd. Treatment, darzalex. I now go once a month for infusion treatment. I havent had any side effects so far so good. Living my life to the fullest dong what i want enjoying what life i have left. Know one knows what tomorrow will bring. God bless everone with mm.

    • Gary Petersen
      Gary Petersen July 21, 2017 at 12:50 am

      Well done Ramona, you have beat the odds given you 13 years ago, and are still doing so. Good luck and may God continue to bless your myeloma journey! Gary

  23. eleanor July 24, 2017 at 4:26 am

    Dear Gary
    I was diagnosed with high platelet count 1,500 but the Jak2 and genetic markers were negative so they want to do a bone marrow….what doe this all mean can you give me some indication have you any info on this tq for your reassurance….eleanor

  24. Ankur August 23, 2017 at 2:44 pm

    Hi Gary,

    I am from India. My brother aged 35 is diagnosed with MM last year and has gone through autologous SCT which got relapsed in just 3 months. After that Doctors suggested him Darzalex and he is having weekly infusion and already had six. But being a progressive disease, his body is not coming to remission, without which another SCT is not possible and his case is that of haplo. Please suggest what next to do to increase his life expectancy.

  25. Ankur August 23, 2017 at 11:29 pm

    Thanks Gary. His treatment is going under doctor Lalit Kumar only and we have taken the openion from different top notches in India. But no one is giving any concrete directions. Hence I am planning to take second openion from some good doctor in US as cost of treatment is too high there which I can’t afford . Please suggest some good doctor who can provide me second openion. My email I’d is ankurkkagarwal@rediffmail.com

    Thanks,
    Ankur

  26. Larry D Blanchard September 25, 2017 at 3:53 pm

    I am 72 years old; 35 years in the fire service and I investigated from 5,000 to 6,000 fires. I, like you have been a lifetime athlete and still race bicycles. I was diagnosed 3 weeks ago with high risk smoldering Myeloma. I am waiting to see a specialist (a 1 month wait). I like your attitude. Good luck.

    I plan on resuming bike races and running marathons post therapy.

  27. Mary September 25, 2017 at 5:51 pm

    Gary,
    My husband was diagnosed in July with Stage 3 Light chain multiple myeloma. He has started RVD and is responding well. We went to Dana Farber and met with Dr. Richardson. He has recommended staying on RVD for 8 cycles and than maintenance dose of RVD on going? Our Dr. wants us to go to Mayo Clinic for second opinion and feels a Stem Cell Transplant is our best option. Very confused. We have heard that sometimes you can get acute leukemia by being having SCT? Please help us sort this out. Also, what do you know about Car T therapy and new clinical for treating mm

    • Gary Petersen
      Gary Petersen September 27, 2017 at 8:08 pm

      Mary, Dr. Richardson is an outstanding myeloma expert, however it is always good to have a second opinion. I went to Mayo Jacksonville, but went to UAMS for a second opinion and ended up getting my stem cell transplants at UAMS. Most doctors will still recommend a stem cell transplant if the patient is fit. If you go to the mayo mSmart site, and know your husbands FISH test results and GEP(gene expression profile) you can look at what Mayo recommends. You can find it at the link: https://nebula.wsimg.com/e1520dd2009dae7c8ea5ca513775b8fa?AccessKeyId=A0994494BBBCBE4A0363&disposition=0&alloworigin=1 Good Luck and may God Bless your families myeloma journey/Gary Petersen

  28. Nadine St. Godard October 3, 2017 at 4:25 am

    Hi Gary,
    I am a 60-year old Canadian living and working in Austria. I was diagnosed 2 years ago with high IgM levels which could develop into multiple myeloma. MRIs and X-Rays taken one year ago showed no bone damage. My doctor speaks English but doesn’t use many of the terms I’ve been reading on your website. I guess I might be considered to have smoldering myeloma(?)
    My last blood test was done this past September and my IgM levels had doubled from 1700 to 3100 in the last 6 months. My doctor suggests that I have another blood test in 3 months as well as MRIs and X-Rays.

    I plan on finding a multiple myeloma specialist through the links that you provided and an English-speaking support group. But I’m wondering what you think about alternative/holistic cancer clinics that use more natural treatments as well as Dendritic Cell Therapy? I’ve looked into a couple of them – they seem good but are very expensive and are not covered by my insurance so, before deciding to receive treatment, I’d like another opinion.

    Thanks for any insights you might have.
    Nadine

  29. Gary Petersen October 4, 2017 at 11:08 am

    Nadine, You are doing the right thing finding a myeloma specialist. There are new guidelines for smoldering, and they can be found at the link: http://imwg.myeloma.org/international-myeloma-working-group-imwg-criteria-for-the-diagnosis-of-multiple-myeloma/ I believe in healthy dieting, and exercise to help to improve the immune system, however I have seen no evidence to use alternative medicine as a substitute for the many excellent treatments currently available for myeloma. The only personal experience I witnessed had a terrible end. Good luck and may God Bless your myeloma journey/Gary

  30. Tina Y. November 3, 2017 at 8:33 pm

    My friend was diagnosed this October12, 2017 with multiple myeloma. He has no real family, only me. He is being treated with B0RTEZ0MlB(?) and DEXAMETHAS0NE. He hasn’t had any terrible side effects as of yet. His doctor wants him off until after April of 2018. I go over and clean his apartment, wash clothes, etc. I do everything I possibly can. I work anal hours for the postal service and I am getting burned out. I am very, very upset with him, as he is not calling to set up his follow ups with nephrologist, etc, etc. He simply sits in his apartment day after day, watching tv and smoking cigarettes. I don’t know what to say or do for him to get him to care about himself, but this destructive behavior can’t continue. When I tell him he needs t o start putting up a fight, he just gives me a blank stare. He is 54 years old, he could have much more time if he would get up and fight this. Does anyone have any ideas about this? Any advice would be appreciated! Thank you so much!

    • eric January 2, 2018 at 6:59 pm

      It really is hard to motivate people if they don’t want to be motivated.The fact that he is sitting there smoking tells you something.
      Sounds like he really does not want to fight, maybe you should ask him does he think a change in life style might be of benefit or does he not care, at least then you might just accept his position .

  31. Roger Wills November 16, 2017 at 11:43 am

    Hi. Its is good to read other peoples Myeloma experiences. I have Myeloma, found in 2010 after MRI of back which had a tumour in the L2. After surgery then had CTD Chemo for 4 months and then STem Cell Transplant in Nottingham City Hospital UK. Then 4 monthly checks for past 7 years.
    After neck aches and right arm aches had small tumour base spine in 2016. A bone marrow check showed no Myeloma. Radio Therapy killed the tumour. However this year my Para Protein checks showed 3 then 4 and then 6. In July after cycling in France, the pain in neck made me cut short the vacation. At home I experienced a sharp crack in my neck and rushed to hospital. MRI showed a tumour had eaten most top vertebrae holding head on. Also another tumour eaten part right humorous in arm away. Surgery involved head being supported by rod screwed to spine. Now on a Chemo trial no 12 which has THALlD0MlDE, DEXAMETHAS0NE and IXAZ0MlB. After 2 months the paraprotien check showed No Detecable paraprotien. Have 3 more months and then Stem Cell Transplant for 2nd time. I have been lucky with a relapsed time of 7 years but the tumours have caused major bone problems. I would always recommend a 2nd opinion and seek the best Consultants you can find.
    I wish all other Myeloma patients the very best of luck. Don’t give up and fight to the finish.
    Roger Wills, Cambridge UK.

  32. Leo Erwin December 10, 2017 at 1:01 pm

    I am in year 4 tx, chemo…I started with dx MGUS..then bone marrow aspiration ..was a nurse 38 yrs…had the back problems on going, pt lifting and such, long flights were horror., all of a sudden all changed….the intense bone pain of sternum and l5 area and chest, would send me to bed. , with pain meds., then a tooth needed extracted and my jaw bone became infected and the jaw bone has been debridement 4 times . The gum leaves the bone and exposes raw jaw bone. I continue the tx…exhausting and very pai nful at times.. It seems tiredness and nausea are top of list right now. How do you deal with all this…

    • Jenny A
      Jenny A December 13, 2017 at 12:02 pm

      Leo, we are so sorry you have been through so much. This disease is so challenging and the jaw issues you have sound horrific. We hope you are seeing a myeloma specialist which is the best thing you can do for your own care. All the best to you and we suggest finding a support group near you to find others that can help share their experience.

  33. eric January 2, 2018 at 6:50 pm

    I am not sure there are any specialist cancer doctors in my area of NSW .
    My GP basically said there are some who have a private practice but also are the same doctors you would be using at a public hospital facility and the care would be no different.
    Unlike the USA private health insurance is disappearing with 17% insured dwindling away for the last 20 years because of the cost and the fact that it really does not deliver you any better care than you can get through Medicare .
    Our best facilities are in public hospitals with specialist units, private hospitals can’t match the public hospital .

  34. Bhanu yadav February 5, 2018 at 12:41 pm

    This is very very useful information … I wish all the people who have been suffering bone marrow cancer to be thankful for this article and be brave … I have been in love with a woman since 6 years … She is just 25 old .. unfortunately couples of days (03-02-2018) she has been diagnosed bone marrow cancer 😢😢😢😢😢😢

    I am from india

  35. Linda February 26, 2018 at 4:09 pm

    My husband was diagnosed with Myeloma last August, he appeared to be a candidate for stem cell replacement as his paraproteins were less than 1 in January this year.5 weeks ago he started feeling unwell, more pains, and difficulty breathing, and was put forward for CT scan to see what is happening in his lungs. That was carried out yesterday, today we got informed there was nodules in his lungs and abdomen and on his jawline. He also has ascites and oedema. What is his prognosis as his sudden decline and how widespread his cancer is has caught his team by surprise.

    • Gary Petersen
      Gary Petersen February 26, 2018 at 7:03 pm

      Linda, I am not a doctor, but usually a PET scan, CT, and or MRI is conducted at diagnosis. In addition a FISH test and or a GEP(Gene Expression Profile) would tell if your husband is high or low risk. I do not know what chemo he has taken, and what the plan is for the next steps. If he has not been seen by a myeloma specialist, not just any hematologist oncologist, he would be best served if he did see one quickly. If high risk a specialist is the best chance for obtaining the most up to date treatments and clinical trials. Good luck and may God Bless your families myeloma journey.

  36. Garen Winn August 8, 2019 at 4:36 am

    Thanks for the information you are spreading. We are trying to help my Dad. Do you have any information on a ketogenic diet and how that affects MM? Thanks

    • Jenny A
      Jenny A August 14, 2019 at 8:44 am

      Garen, sorry but there would need to be a large study run to determine which diet is best in myeloma.

  37. jacqueline reid August 16, 2019 at 1:23 pm

    Hi Garry thank you for your inspiring ,information. My daughter was recently dx with multiple myeloma. Chassidy is 36 years old. She currently under treatment at Sloan kettering cancer center in New York City.

    • Gary Petersen
      Gary Petersen August 16, 2019 at 2:25 pm

      Jacqueline, I go to MSKKC and see Dr. Landgren. He leads the myeloma program at MSKKS and is one of the best in the world. Sad your daughter is young, but when young life expectancy is twice that of someone over 50. Good luck and may God Bless your families myeloma journey/Gary

  38. Dimitra August 19, 2019 at 8:49 am

    As a Myeloma patient diagnosed in February
    I find your information very helpful and empowering

    • Jenny A
      Jenny A August 19, 2019 at 4:20 pm

      Thanks Dimitra!

    • Gary Petersen
      Gary Petersen August 21, 2019 at 2:31 pm

      Dimitra, So happy you have found this post of value. Best Regards/Gary

  39. Sanford Erickson August 21, 2019 at 5:04 am

    Best M.M. site I have found for newbies (first year or two).
    Thanks Gary

    • Gary Petersen
      Gary Petersen August 21, 2019 at 2:27 pm

      Sanford, Jenny and her team make great efforts to make the site a great resource for the myeloma patient community. Glad to be able to contribute to her efforts.

  40. gary August 21, 2019 at 11:31 pm

    multiple mieloma

  41. Greg August 30, 2019 at 7:29 pm

    Thanks for this wonderful article. My dad (65, IgA) was diagnosed with SMM last October and while his numbers remain below the thresholds for MM (no CRAB criteria, and no MDEs), his MM specialist (a doctor/researcher associated with the MMRF) is going to start treatment on him later this year in order to get a jump on the problem. Hoping for a nice long remission and many more treatments hitting the market over the coming years.

  42. George September 3, 2019 at 6:46 pm

    Thank you so much for all of this invaluable information. My uncle has just been diagnosed with this disease and lives in Colombia.

  43. Danny McMillan September 11, 2019 at 2:04 pm

    Was just told today that I have MM. It is terrifying to know that you have it, but even worse to not know how long you have left. Reading everyones stories gives me hope that I can beat the odds too and live a long life. I just turned 50, I have Light Chain Myeloma with my Kappa at 69 and ratio 91. Still have the biopsy to go before the dr will make final determination and prognosis.

    • Gary Petersen
      Gary Petersen September 11, 2019 at 2:20 pm

      Danny, with all the new clinical trials ongoing with CAR T, BiTE, ADC, and AWC, it is a brave new world for myeloma. Because targeted therapy seems to be the direction of treatment, a baseline FISH and GEP would be oh so useful for future use in treatment decisions. Also the younger you are the longer you live, and if low risk cureent treatments should keep you in the fight for 10 to 20 years if you have a myeloma specialist on your team. With a 91 ratio you still may not have active myeloma or even smoldering myeloma. Good luck and may God Bless your families myeloma journey!

  44. Matthew November 14, 2019 at 3:54 pm

    Hi all. I was hoping for advice as I am really in the dark and scared. Following my appointment with a haemotologist I am awaiting a bone marrow biopsy next month. The doctor believes it to be MGUS and when I pressed her on myeloma she said it was “possible but unlikely considering my other three levels were low” I didn’t fully understand that. The thought alone of MGUS petrifies me as I am only 30 and assumed I had many more years. But the fact she is performing this biopsy has near convinced me of myeloma. Any insight would be appreciated.
    Thank you.

  45. Matthew November 14, 2019 at 4:40 pm

    Hi Jenny. Thank you for your reply. I will look into the things you have stated. I kind of get the impression they would only order this biopsy if they highly expected myeloma. Or is it a regular practice with diagnosing MGUS. Sorry I am just very panicked. I appreciate your time.

    • Jenny A
      Jenny A November 15, 2019 at 10:23 am

      Keep us posted Matthew. There are thousands of people waiting to support you in either case, You are not alone!

  46. Matthew November 15, 2019 at 11:33 am

    I have to wait so long for the biopsy. The anxiety is literally destroying me. I guess the best case scenario is MGUS. But all the information is so conflicted. Is it possible to live a normal life with MGUs not progressing. Or is it literally a ticking time bomb. Thank you for your time you’ve been very helpful Jenny. I just have no one to talk to and I’m trying to keep it together. Must stay optimistic I suppose.
    Matthew

  47. Matthew November 18, 2019 at 2:05 pm

    Thank you for your kind words Jenny, they are really helping at this most stressful time. My biggest fear is that I already have myeloma. I must remain positive. But everyday things are becoming a struggle due to the fear. I will check out the group. Thank you again.

  48. don December 6, 2019 at 11:45 am

    I have been taking revlimid for 4 yrs. for my mult. mye. & i have decided to stop taking it.What ever happens will happen.I am 77 and enough is enough.

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