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

49

By Gary Petersen

I published on this subject more than a year ago, and it has been very helpful to many in the myeloma patient community. I have provided some updates and hope that it helps to assist you in your myeloma journey.

Picture The latest SEER(Surveillance, Epidemiology, and End Results) data for multiple myeloma was published in 2013 by the National Cancer Institute, and the average life expectancy remains at 4 years for the third 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 7 year and 10 month survivor, so I have beaten the average life expectancy prognosis at the time, even with a negative prognostic indicator (kidney failure). I believe you can break into two parts a patient’s ability to beat the odds. Part one is disease dependent, or the hand that you were dealt. Part two is related to the level of care that is available to you.

Part 1 – The Disease and You
Some people are just plain lucky and have a form of myeloma that is not that aggressive.  One example of this is 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 two times more likely to survive if you were diagnosed . The average age of the typical myeloma patient is 70.

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 translocations 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 two years.

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 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 four years, half of the people will invariably beat the average.

I am sure there are other disease factors, but there are additional parts of disease control that you may or may not be able to influence.

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, 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. 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. Unfortunately without care, like people who need dialysis (which is always covered by Medicare), you will have below-average life expectancy.

An Experienced Myeloma Specialist Saves Life! MAYBE YOURS!
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, while the average remains stagnant at 4 years.

For a listing of these exceptional specialists or for a more extensive list without survival history check the links. 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. Be The Match also collects survival statistics by facility for allogeneic (donor) transplants for myeloma.

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. 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. If you had a brain tumor, you would choose a brain surgeon. Why would you not do the same for myeloma?

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 Daratumumab or Ixazomib through special programs.  Or some specialists can use drugs that are only approved for relapse or secondary therapy options (Krypolis and Pomalyst, and obtain approval to use them for newly diagnosed patients. They also have access to the best clinical trials like Velcade-Revlimid-Dexamethasone for front-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 are showing promising results in clinical trials, 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 of myeloma. The number one complication is pneumonia, and others include infections, kidney failure, anemia, etc. 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.

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 both on the www.myelomasurvival.com site and the Myeloma Crowd site. 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!

There are 80,000 multiple myeloma patients in the USA, and if we can move the average from 4 years to 10 years of life expectancy with the myeloma specialists, we could save 80,000 times 6, or 480,000 years of LIFE.  Many times more if we include the entire world.

One way for YOU to help with myeloma awareness is by getting this message out to your Facebook, Twitter or other social media contacts.  You may not know someone with myeloma but your contacts might, and you may just help to SAVE LIFE!  Just click the Twitter and Facebook icons at the end of this post to share. Good luck and God Bless your myeloma Journey.

Share.

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

49 Comments

  1. 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

    • 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

    • 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

  2. 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

    • 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

  3. 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

      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. http://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

      • 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 Revlimid and Dexamethasone. 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 on

      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

        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.

  4. Janelle Gawarecki on

    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. 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

      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

  6. 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, dexamethasone, and Revlamid. 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

      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.

  7. 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

      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

      • 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….

  8. I was diagnosed 7 years ago. Rev/Dex lasted for almost 6 of those years,needed to add Carfilzimib 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

      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

  9. 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 Carfilzomib/Revlamid/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

      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

  10. 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

  11. 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.

  12. Hi ,
    My mother has been diagnosed with MM on 2014. Our took bortenat and lenalidomide 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.

  13. 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

  14. 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

  15. Gary Petersen

    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

  16. 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)

  17. 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

  18. Gerri morales on

    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

      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.

  19. I am PK Singh 9age 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 : Lenalidomide 15mg and Dexmethasone 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

      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 (bortezomib, carfilzomib or ixazomib) 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.

  20. Ramona villarreal on

    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.

  21. 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

  22. 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.

  23. 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

Leave A Reply

Please enter the correct captcha code to verify that you are human.