We have noticed over the past couple of years that people find our site, www.mmsupport.net using search phrases like, “Dying from Myeloma,” “Final Days of Myeloma” and “What’s It Like To Die From Myeloma?” Not the easiest of topics to discuss, but it is something we should try to cover.

Years ago, back in the dark ages, when MM went undetected for decades, and the patient presented with so many different symptoms, doctors didn’t detect MM until it was far too late. Patients literally died of crumbling bones, high calcium, confusion and coma, or end phase renal failure. Now we know much more about MM:

A. We detect it earlier.

B. We treat it better.

C. We have better drugs available.

However, until a cure for MM is found; the end, whilst it can be put off for a long, long time, is, at the time of writing, inevitable. The natural balance of our bone marrow and blood is tipped against us. Too much protein in our blood upsets our circulation and our kidneys and can leave us prone to other complications like Amyloidosis; excess calcium lost from our bones clogs up our kidneys and can cause cognitive impairment, as well as pathological fractures. The over production of plasma cells in the bone marrow leaves us open to infections, and our immune system deficient.

Few patients die from Multiple Myeloma per se. Most will acquire an infection like pneumonia, or suffer renal failure, or simply fall into a coma from hypercalcaemia – having too much calcium in the bloodstream.

What can happen? This is something we can be fairly certain of. Given that the health of the patient has not been compromised by a drug trial that fails (and this does happen, although rarely), then there are a known number of possibilities.

Ever diminishing levels of the blood’s components can cause a number of difficulties. Without enough platelets, one can hemorrhage. The main function of platelets is to stop bleeding, so without enough of them there can be internal bleeding, nosebleeds and other unstaunched bleeding.  Without enough white cells, (there are several types) infection can take over. A shortage of red blood cells, which have a main function of carrying oxygen to vital organs and the brain can cause you to feel fatigued and dizzy. There are lots of good online resources for understanding more about how our blood works.

We know that MM leaves the patient vulnerable to outside infections; these can range from things like Pneumonia, CMV. hospital acquired infections (and whilst not wanting to be alarmist, there is a small chance of an MM patient contracting one of these), random viral and bacterial infections.

Renal failure is also a distinct possibility. MM and connected plasma cell dyschrasias like Amyloidosis, put stress on the kidneys because of an over-production of proteins. The small tubules of the kidneys can become blocked and their efficiency at removing waste severely impaired. This can also adversely impact on joints, where protein deposits are laid down in connective tissue and around cartilage.

Hypercalcaemia. Because Multiple Myeloma interferes with the bone resorption process, too much calcium can be lost from the bones and enter the bloodstream. At its worst this will cause drowsiness, confusion and, ultimately, coma and death.

What can be done? When all drug options have been used, or if the patient is just too weak for any further treatment, hospice and palliative care are the only options. My friend chose to die at home, rather than in the hospice; the local hospice couldn’t have been more helpful and caring.

Whatever was required in terms of hospital equipment, (like a proper hospital bed, wheelchair, bathroom adaptations) was provided without question. A nurse was on call all the times, and made house calls three times a day. The nurse was able to administer pain killers and any other medication required to make the patient comfortable. About a week before my friend died, she went briefly to hospital for an infusion of bisphosphonate (Aredia). This lowered her serum calcium, and meant that for the last few days she was coherent and not comatose. This was important to both her and her family – they were able to enjoy each other’s company up to the end.

What’s it like? Nobody can answer this; but having witnessed the last few days of an MM patient, I can make some assumptions. First of all, there was no pain. There was a  sense of peace and calm. First my friend stopped taking even tiny quantities of food and then her kidneys started to fail. Eventually she could not take any fluid, just something to keep the mouth moist. When the end came, I am told she simply went to sleep with her family around her. The end was relatively quick, only about seven days elapsed between the bisphosphonate and the last day.

What else? If the patient has an acute infection, hospital care may be necessary to maintain a quality of life to the end. With something like pneumonia, and this can be deadly, the doctors may decide to simply stop treating the disease. This might be because the drugs have become ineffective, they pneumonia has become refractory (resistant) to treatment; in a case like this, pain medication and oxygen would be administered until the patient is overcome by the disease.

Patients who have acute bone involvement would be given pain medication to make them comfortable, possibly a bisphosphonate infusion to prevent early coma.

Those who have kidney disease would probably be taken off dialysis and allowed to die quietly and pain free.

Spiritual needs: Many patients have very firm spiritual and religious beliefs. Whether the patient is in hospital, hospice or at home, it is not easy to predict when somebody is going to die. Depending on the patient’s  beliefs, plans should be made in advance to contact the appropriate clergyman or religious representative. Where the patient requests a “last rites” type of absolution, you would need to discuss fully and frankly with the doctors when this should take place. Other spiritual and religious needs should be discussed in advance with the doctors, hospital or hospice management, or in the case of a home decision, with the appropriate religious and civil representatives.

Finally: In most cases, the actual end phase for the myeloma patient would be calm,

pain free and peaceful. For relatives and caregivers, it is very hard to watch a loved one die, but this is likely what will happen. Some patients may have a quick end (due to a heart attack or something like that), but there is a good possibility that nothing else can be done to improve the health and welfare of the patient by the doctors, and you, the relatives and caregivers will have to watch the last days of your loved one. I can’t make things any easier for you, but I hope I have explained that the patient will most likely pass away with no pain and a sense of calm and peace.

Copyright 2006, Chris Hollyer and Beth Morgan. All rights reserved.



114 Thoughts on “Multiple Myeloma, the End Phase. What’s it like to die from myeloma?

  1. Kim B. on November 8, 2011 at 9:01 pm said:

    I am moving in with a friend who Has Multiple Myeloma so she can die at home. Any pointers? I have never been through something like this. I just want her to be happy til the end. THANK YOU

    • MMSupport on November 8, 2011 at 9:33 pm said:

      I don’t know what your friend’s financial circumstances may be, but if it’s possible, get hospice involved. If your friend has Medicare or health insurance, this should be trouble free. A doctor would call them in to help manage pain and other symptoms.

      The main thing is to provide comfort, both physical and emotional. If possible, be very open and honest in discussing this with your friend. What does she want or need? Is she able to communicate?

      • Kim B. on February 1, 2012 at 8:41 pm said:

        Thank you. She was in a nursing home and she passed at the age of 39 Christmas Eve morning. So I never got her moved out. She had Hospice and they were great people. She was very comfortable but mad because she passed in the home. I was the only one who stayed with her and took her out. Her family treated her like she had no say in anything and that was not right. So drive 2 hours to spend as much time as I could. I miss her but she is so much better off. She even looked better after she was gone than she did 5 hours before, she called for me to come as they said she had about 3 days, I came over spent 3 hours with her and told her I love her and see her soon. I pray for people and families facing this cancer. Thank you again. God Bless :grin:

        • Giselle Jimenez on January 9, 2015 at 1:55 am said:

          thank you so very much for what you posted about this devastating desease. my mother is in the last stage of MM . we both are only daughters, so no family to share the pain. I work with psychiatric patients as a CNA and it is very tough the contrast. for the moment , she looks peacefully calmed, like with an expression of happiness in her face. it is rare but it is like this. she doesn”t talk but she is concious and she knows me. i feel so devastated that i have no words. I really feel thankful of you as you pray for us. feel my blessings because I’ve been doing the same for you. very thanks from the bottom of my heart. God bless.

          • Barbara on October 11, 2016 at 7:20 pm said:

            My mother is hanging in there. She gets chemo shots in her stomach and the next day is awful. Black diarrhea for hours, even after taking something to stop it. I hope she doesnt experience any pain, maybe fall in a coma. I don’t want her to suffer. Thank you so much for sharing.

  2. teri fawcett on December 7, 2011 at 4:39 pm said:

    I’m grateful to find this website. My dad was diagnosed with MM 5 years ago and has recently been told treatment is no longer helping. It’s difficult to find information on the last stages of MM so I’m so thankful to all for posting what their experiences have been. I feel better having some knowledge of what I can expect, though I’m still heartbroken, you have given me some peace about my dad’s time left with me and my family. Thank you

    • MMSupport on December 7, 2011 at 4:56 pm said:

      What treatments has he had? Maybe he could get into a trial?

      • teri fawcett on December 8, 2011 at 1:33 pm said:

        he’s tried a couple different chemo treatments…one of which was a new trial drug, of which I can’t remember the name. His doctor wanted him to try doing a stemcell transplant but at this time he doesn’t want to do it, he’s 74 and doesnt’ even want to go in that direction. We’re thankful the treatment has given us 5 more years with him. He’s getting weaker, memory loss, tired often, neuropathy in his legs and such. He has to have blood and platelet transfusions almost weekly. Can you tell me if these are the beginning stages of the end of his time here? I realize no one knows the exact time the Lord will call him home but I do better if I can have signs to watch for. My mom is the type of person who doesn’t like to talk about it so not much info is shared with me and my siblings. Thank you so much for your help.

        • MMSupport on December 15, 2011 at 5:27 pm said:

          I’ve heard from some caregivers that we just keep getting weaker until we can’t hang on anymore. If he’s in bad shape right now, harsh treatment could wipe him out. You have to respect his wishes. He might know that his time is near and just want to be at peace.

          For the memory loss, check his calcium levels. Elevated serum calcium from blood loss can cause confusion. So can low hemoglobin. It’s hard to operate when your vital organs don’t get enough oxygen from your blood.

          What has the doctor said?

          By the way, I highly recommend getting enrolled in a hospice program. Medicare will pay, and a nurse will visit each week. A nurse’s aid will come and assist with bathing and other needs. They will even send a doctor to the home, if needed. They will manage pain and other symptoms. I’m very grateful to the help they’ve given us. The doctor has to order it, and you have a choice of which company you want to use. Sometimes there are several in an area. The one I found to be the best here was a not-for-profit hospice organization affiliated with the local hospital.

  3. teri fawcett on January 7, 2012 at 6:57 pm said:

    He saw his oncologist last week and again his count was too low for chemo so his doctor works on keeping his wbc/rbc count up so he can have continue that. He just came home from the hospital for the 3rd or 4th time this year with pneumonia, and still not feeling so great. I’m not sure if he’s to the point of needing hospice, I think it would be helpful so my mom doesn’t have to bathe him but I’m pretty sure neither would accept that right now. I will check into the hospice idea when my siblings and I agree it’s time to talk to my parents about it. Thank you for suggesting that. As of now, his pain is being managed pretty well. He does his best to go to family functions but he tires easily and is weak physically. Thank you again for your response. I’m sure I’ll have more questions to send you way.

  4. Sometimes hospice type care is referred to by some caregivers as “palliative care”. This seems easier for people to accept than hospice care since hospice might have negative connotations and we often view hospice care as keeping someone comfortable in the last weeks/months of life. Since many people don’t like to think of their expiration date, palliative care to help get them through a difficult time is easier to accept.

  5. My uncle has had MM since Dec 2009 and I believe he is in his last year of life. His M-protein count was undetectable for almost a year and just within the last three months has soared upward. He was given weekly velcade treatments starting in December 2011 but his M-protein count continued to increase. So now he is on cytoxan plus velcade plus dexamethasone. Has anyone experienced this combination of drugs, and if so, what where the results? The doctor did say that if this treatment does not work there are no options left.

    • MMSupport on February 6, 2012 at 1:31 pm said:

      What is your uncle’s treatment history and how has he responded to past treatment? Does he have any symptoms from his MM?

      If you’re on facebook, please join our group. We also have a mailing list (not very high volume)
      Our facebook group > https://www.facebook.com/groups/108654495840465/
      Mailing List > http://www.myelomablog.com/myeloma-support-group/

      From these places you can get more responses.
      – Beth

      • Beth,
        When my Uncle was diagnosed(now 80) there was extensive damage to his neck vertabraes and to a hip. Surgery was performed on each area to rebuild with titanium rods and braces. Tumors were also removed from each area. He was treated with Chemo and Radiation and was very sick almost out of his mind for several months but pulled out of it and has had almost a year of active life with a good mental outlook. Amazingly he has had relatively no pain since the original treatments. Even now with one dose of cytoxan he has no side affects. Tommorrow he goes in for a second dose. We are hoping that this series of treatments lowers his m-protein count. But the hemotologist is concerned. We are taking each step as it comes not knowing what to expect next. He lives alone and we are managing his care from a distance of 7hrs, traveling as much as it is possible. Thanks for your comments!

  6. Lawrence on February 5, 2012 at 11:48 pm said:

    Just found this site while looking for info on the last stages of MM. I was diagnosed 2 yrs ago and have had 3 lots of chemo (Velcade). I”m 68 and was working at the time I was diagnosed. I have kidney problems – about 26% function, lumbar plexoplathy and have just had a stent put in my heart after a heart attack. Not bad eh? I am interested in the final run down; it seems from other contributors that that loss of mobility i.e. weakness of the legs, and increasing tiredness are the norm, symptoms that I am experiencing at the moment. I am trying to keep up an exercise regime but I do find that it becomes a little more difficult each time. However it is very heartening to hear that the end is not necessarily painful which is a relief not only to me but to my wife and son. I intend to post regular reports in the hope that they might be of use to fellow sufferers and their supporters. Good luck to you all.javascript:grin(‘:grin:’)

    • MMSupport on February 6, 2012 at 9:31 am said:

      Hi Lawrence, if you’re on facebook, please join our group there. We also have a mailing list that we discuss matters on. I have a very good friend who is a nurse who works in palliative care, and she has told me that the couple of myeloma patients who have come to her floor, have passed away very quietly and seemed not to be suffering at all. I’ll get more details and will write about it.

      Our facebook group > https://www.facebook.com/groups/108654495840465/
      Mailing List > http://www.myelomablog.com/myeloma-support-group/

      If you want to start a myeloma blog, one of us can help you with that, too.

      Take care,
      Beth (MM since 2003)

  7. margery on February 12, 2012 at 2:25 pm said:

    My husband was diagnosed with stage 111 myeloma Sept. 2011. He has bone involvement in several vertebra. He had 10 radiation tx’s for pain management then started on Revlimid with Dexamethasone. The first cycle @ 25mg caused a rash and he was taken off and put on 15mg after the rash cleared. The 2nd cycle caused a rash but not severe and he completed that cycle. The 3rd cycle caused a rash after 5 days. It progressed to the point that his entire body was burned causing Steven Johnson syndrome and excruciating pain. He also has been taking Zometa IV once a month. He has now developed osteonecrosis of the jaw and a severe saliva gland infection from that tx. He has become fatigued to the point that he is barely able to move. His appetite has been decreasing but after the jaw problem it is of course worse. He has lost 30 lbs since Sept. He is extremely dizzy and has trouble concentrating. He is 73 yrs old. Needless to say we are to the point that chemo is not an option. I need to know if this fatigue is a passing thing or if we are on the downside of this disease. I am so glad to have found this website..if nothing else it gives one a chance to vent. Thank you

    • MMSupport on February 13, 2012 at 6:48 pm said:

      Hi Margery,

      Wow! I’m really sorry to hear about all the trouble your dad has had.

      The dizziness could be from too much calcium in the blood (from the bone damage). It could also be from a low HGB. How are his blood counts?

      What does his doctor say about all this? Has he prescribed any palliative care?

      Our facebook group > https://www.facebook.com/groups/108654495840465/
      Mailing List > http://www.myelomablog.com/myeloma-support-group/

      • margery on July 15, 2013 at 4:58 pm said:

        Dear Beth

        I accidentally came on the website and had forgotten I had used it. My husband subsequently developed ARDS from the jaw infection. He came out of the hospital and was in rehab for a month. He came home at 115 pounds with Home Health. We all thought it would not be long.. He recovered from that put on 35 pound and had nearly a year without horrible pain. In March of this year he again started with uncontrollable pain. He opted not to start Velcade, the med that was offered. We are now home with Hospice and have been since March. He has morphine for pain control. He has had constipation, diarrhea, vomiting…no appetite..weight loss (120 pounds today) Over the weekend he has developed breathing problems and is on 5L/o2 and takes breathing treatments regularly. He has becomed so deformed that it is difficult for him to stand or sit. The hospice nurse today says he has pneumonia. We don’t know what is to come of course. I do thank you for giving people this opportunity to discuss their situations.

  8. My husband was diagnosed with MM back in 2003. He is now 58. He has had all the chemo that is available and after 10 years he has started to decline. He had the latest chemo out in the market and we do not see any improvement. He has to have radiation on his hips and upper leg, since the MM has caused large deterioration of his bones. He is in pain most of the time and refuses to take morphine only when he can no longer tolerate the pain. I don’t know how close he is to the end. Can someone help me to understand this stage of the disease and what to expect? He does not permit me to talk to the doctor he insist on his total control of his care. He does not allow me to be with him on the appointments with the doctor. If he gets “the talk” from the doctor I will not know. His control is almost obcesive. Please give me some advice on how to deal with this problem.

  9. My dad I believe is in the final stages of MM – his platelets have dropped steadily from 28, to 21 to 14 in a matter of 10 days. They gave him a platelet transfusion & 2 units of blood & his platelets jumped to 55. But overnight they dropped down to 44. They have talked about the palliative care & I really believe he needs it. Is this a rapid decline in a MM patient & really what should we expect? He keeps getting nosebleeds & we’ve been told he could have a spontaneous blood vessel rupture. I want to be as prepared as I can be and help both my Mom & Dad through this process. Thank you – Vickie

    • MMSupport on September 2, 2012 at 11:03 am said:

      Hi Vickie,

      I’m sorry about your dad. I’m an MM patient. I know that when it’s my time, I want to be as comfortable as possible. I update my advanced directives every couple of years. I wonder if your dad has something like that (a legal document)? Has he voiced his wishes, or is he still able to talk? I think it’s really important to see what he wants to do, if you can. Do you have a hospice organization in your community? If you’re in the US, and he’s on Medicare, it would be covered and you wouldn’t have to worry about costs. They would send an aid to bathe him every day, and a nurse would come at least once a week – or whenever you needed one. They don’t stay with him 24 hours a day though. They would also cover all the medications needed to help him stay comfortable. If he needed any durable medical equipment, that would be covered too.

      What does his doctor say about this? Does he think it’s going to help to keep on giving platelets?


      • Beth,
        Thanks for your kind words. The doctor has mentioned something about hospice, and also about a specialist that he wants him to see. Dad is standing firm that he won’t make any decisions about anything until he sees the specialist. He is however, very clear about what his choices are. He does have a legal document that spells out his wishes & voices them to us as well.
        We have an appointment on Tuesday with his VA doc & should know more about this whole platelet transfusion thing. We have a 50th wedding anniversary get together planned for them this coming week-end & I believe that when that is over, he may see things a little differently. It certainly is a roller coaster at this point.
        Beth, I send you much love and well wishes with your MM battle.


  10. gerard ballack on September 19, 2012 at 4:16 pm said:

    :roll: thank you.

  11. Carol Samuels on September 30, 2012 at 9:05 am said:

    mu aunt has had mm for 4 yrs. Her hip broke on its own. She had surgery to replace hip and 2 weeks later infection sit in. She had 2 more surgeries to remove the hip and replace with an antibotic spacer. She is on antibotics every 4 hours and will be until Nov 15th. Question – even with all this antibotics – it appears that the infection is returning. Is this a common thing for multiple myeloma and what is done at this point. Thank you for your help

  12. Carol Samuels on September 30, 2012 at 9:11 am said:

    my aunt has multiple myeloma for 4 years. her hip broke on its own. She had a hip replacement and 3 weeks later it became infected. The dr. removed the hip and after 2 more surgeries has put in an antibotic spacer. She has been on antibotics from the beginning and is receiving it every 4 hours around the clock and will do so until Nov 15th. The question is – it appears to be infected again. Is this common and what will happen if the infection cannot be cleared up. Thank you

    • MMSupport on September 30, 2012 at 9:26 am said:


      Thanks for writing. I am going to ask someone at a hip surgery center about this and get back to you.


    • MMSupport on October 22, 2012 at 3:48 pm said:

      It is uncommon for not rare for the infection not to clear. It may require a change to a different antibiotic. An infectious disease physician should be the one overseeing this and not the orthopaedist. The infection must clear and remain cleared for a number of months until the hip replacement can be reinserted. In rare cases it is never put back in because of the chance of infection.

  13. Barbara on October 10, 2012 at 11:39 am said:

    thank you for your honestly and gentleness

  14. Andy Dunn on October 31, 2012 at 9:07 am said:

    Well done with the site and Beth you are a star for taking the time and energy to help in this way thank you x
    My wife (50) will have been diagnosed 4 years in Feb 13
    She has MM, total renal failure, we hemo dialyise at home thanks to the NHS,4 crushed vertibrae, she has had cracked ribs and wrist.
    So far she has had 9 moths of chemo, a think a thalidomide type drug and steroids &
    Radio therapy
    then 10 months later stem cell transplant – her own, just about finished her off and this is when her failing kidneys packed in and she started dialysis first on the ward and then at home
    She is on the cusp, either before or after Christmas of starting chemo again, I think revlamid and I believe this may be the last treatment they give her
    Some days she is on fine form, doing a little bit of work, cooking and being normal and the next couple of days she can be in bed, hardly eating, doing nothing and looking quite ill.
    When she is like this it is almost impossible to give her the dialysis she need 3.45 hrs taking 750 ml off. So that is turning into a vicous cycle
    I am not quite sure what happens next
    Or how long we have together
    The Neuphrologist kind of thinks she is already past her due date, he thought the stem cell transplant would finish her off and said so
    The Heamotoligst seems more relaxed about everything

    Sorry about my spelling I have galloping dyslexia … :shock:

    Thanks guys – thanks Beth xx Andy UK

  15. Carol B on November 9, 2012 at 4:33 pm said:

    Thank you so much for writing so honestly – it has helped great deal. I have supported a true friend through MM and may now need to support a family member.

  16. Danny C on November 16, 2012 at 6:30 am said:

    Hi Beth,

    First of all, I want to thank you for providing honest answers to so many people who are facing the challenges of MM, either directly or through a loved one.

    My dad and I met his haematologist this week together for the first time. He has stage 3, free light chain disease MM. We found this out because he went into complete renal failure a couple months ago.

    I guess I’m wondering what happens now, I mean how the disease will progress from this point on. Are his other organs going to be affected next? I already see some indications of what looks to be minor dementia. Are the drugs going to help at all with that, or is he going to only get worse cognitively?

    I don’t know how much time he’s got, because while on the one hand treatments have improved to the point where patients can live with MM well beyond 6 years, he is in stage 3. The doctor wouldn’t give us a prognosis, and she was probably right to do so, although I would like to have some idea.

    Anything you can tell me would be greatly appreciated.

    Best wishes,


    • MMSupport on November 16, 2012 at 8:45 am said:

      Hi Danny,

      How is your dad’s serum calcium level? He could experience confusion from elevated calcium, which could be a direct result of the break down of bone caused by myeloma (if he has bone involvement). How are his electrolytes and other test results? Has he been on dialysis this whole time?

      If the myeloma can be controlled, his main problem would remain kidney function. Has he been receiving treatment for the MM? If so, is he responding to that? Did he have any other CRAB symptoms? CRAB: C = Calcium (elevated), R = Renal failure, A = Anemia, B = Bone lesions.

      Even stage III MM can be reversed. I would definitely have his blood checked for anything off that could be causing mental confusion.

      What does your dad want to do about this?

    • Dear Danny

      I don’t know a lot of the details about drugs etc but my mother’s myeloma was controlled by a variety of drugs for 12 years. She did not want a bone marrow transplant. During that time she suffered a couple of bone breakages but otherwise her quality of life was good. She was not working and made sure she got early nights and did not overdo things. She always thought that helped.

      I’m writing this so you can see it is possible for a MM patient to survive for 12 years.

      Sadly, at the age of 70, last week she developed pneumonia. Her weakened immune system could not resist an infection spread. She was on oxygen and strong antibiotics for a few days but felt no pain. Eventually her heart went into arrest, she lost consciousness and was put on life support. Her family were all there when the machine was turned off at the doctor’s advice and she passed away very peacefully. It was the type of death she herself would have chosen. Pain free and peaceful.

      Hope that helps,


  17. Cristina on November 22, 2012 at 2:14 am said:

    Thanks for this web…but I wish I would found this sooner my dad passed away on feb 29 2012 from MM, he was diagnosed dec 2011, he was diagnosed to late! He got pmenomia and after he fell in coma from hypercalcaemi, it happend soo fast the last. 2 weeks he didn’t have no pain, before those 2 weeks he had chronic pain he was gettin morphine 3 hrs plus the morphine patch on his back… He was in chemo an velcade..I miss my dad soo much!!

    • MMSupport on December 2, 2012 at 10:29 am said:

      I’m so sorry about your dad, Cristina. It sounds like he had an advanced case. I’m glad to know that he didn’t have any pain those last two weeks. I sure I hope that will be the case for us all.

  18. my husband was just diagnosed with MM he is 40 and my daughter just celebrated 3 years in remission from (ALL). THE DOCTORS SAY DONT WORRIE ABOUT HOW LONG HE HAS GOT CAUSE HE WILL BE ALRIGHT SO MY QUESTION TO ANYBODY THAT HAS LOST A LOVED ONE TO MM SHOULD MY HUSBAND STOP SMOEKING OR DOES IT HAVE A AFFECT ON HOW WELL HE DOES ? SO PLEAS FILL FREE TO EMAIL ME AT huntersusan@charter.net i could use all the info i can get to help mmy husband deal with MM , THANK YOU SINSERLY SUSAN

    • MMSupport on February 2, 2013 at 11:11 am said:

      Hi Susan,

      I have MM, and, if I smoked, I would certainly stop it immediately! It can only do harm. He needs to be as strong as he can be physically and mentally to deal with MM.

      Congratulations on your daughter’s victory over ALL. I hope she’s doing well.


  19. Trish on March 4, 2013 at 6:56 am said:

    My lovely sister died from MM on 26th January. I miss her so much. she was diagnosed in October 2010.Stem cell treatment did not work for her. She was on several treatments but in November was told last treatment was not working. The end came very quickly. She wanted to die at home after being told she had 2 weeks to live. She was in so much pain she asked to be brought back to hospital. We were all called and told she only had 24 hours to live. She died 12 hours later. She was in so much pain, they had to increase her morphine. She was so highly sedated she never woke up again. We never spoke to her again but at least her pain was gone..Feeling so sad today.

    • Ignatius on April 17, 2013 at 12:25 am said:

      Hi Trish,
      My story is the same as yours, my wife was diagnosed in October 2011 , treatment did not work and she died 22 February 2013. She was 38 years old .
      The last thing I told her was that she can go, she doesnt have to fight anymore,I told her that this was the last time that we will speak and she said that she loves me and the kids and she will see us again ead then they gave her the morphine and sedated her never to wake up again.
      I miss her soooooooo much

  20. CHAVEZ BOWSER on March 13, 2013 at 4:15 pm said:


  21. My mum, has suffered with MM for the last 8years. She has all the chemos and the stem cell transplant. It’s has been a very difficult 8years or her and the family. She is now in her final stage.
    I really need help, to know what to expect.
    She is in pain, and can no longer move around without support…does this mean, end is near?
    Doctor, does not want to give time,but has stopped all treatment, as she is no longer responding.
    Please help.

    • MMSupport on April 10, 2013 at 12:15 am said:

      Dear Romana,

      I’m very sorry to hear about your mum. How is she doing emotionally? Please spend as much time with her as you can, and let her know you love her and will think about her always. I asked one of my MM friends once (there are a lot of us out there) if there was anything I could do for him, and he said, “Just remember me.” I do remember him. I remember all my MM friends!

      All you can do is help your mum’s pain to be managed so she doesn’t hurt. Try talking to her about what she needs and wants.


  22. Yvonne on April 23, 2013 at 1:03 pm said:

    I was diagnosed with mm in october 2009. Two years of velcade and dexanethasone worked well. Now i take 10 ml of revlimid. Also working well. Thats been for over a year. My concerns now are with osteo-necrosis, that I now have from the zometa that i took for over a year. What, if anything can I do to fix the damage that I now have with my teeth and gums? Or is this yet another componet of my “new normal”, that I have to live with? Of course I have discontinued using zometa. I had to have a tooth pulled. And it is not healing. Any suggestions?

  23. sophie on April 30, 2013 at 10:35 am said:

    My mother is 56. She complained of backache a year ago and was diagnosed w MM in March. we were shocked n were in denial. I cant believe cancer is in the family. She is a hardworking mum and just graduated in Masters. She had big plans for the future. She was alwasy away for work and only be home on weekends.Now all she could think of is to be cured n enjoy her life with her family. the doctor is prescribing oral chemo. She also will be taking her 2nd dose of an injection for her bones. Still, she is very weak and on wheelchair, complains of pain evrytime she gets up but taking painkillers to stop the pain. She cant stand without support. we are not informed of what stage she is but the doctor convinced her that the clinical trial she’s in has very good prospect. Now we don’t know what to expect just hoping that she will be responsive towards treatments n b gven 2nd chance to live her life. We just hope that latest treatments n research will cure this disease n the clinical trial she’s in is not just a way to keep us feel relieved. We too need honest opinion from doctors.

  24. shirley on June 10, 2013 at 2:12 am said:

    Hi. thanks for the info on end stage mm. We feel this is where i am now and it is good to
    hear other views and experiences, I was diadnosed Feb
    22 2004. By God’sgrace i am still here. but for how long i don’t know. i know i am tired of some of the side effects. may God bless you for your mission here. thanks

  25. sue varvil on June 25, 2013 at 2:01 am said:

    we just found out last week that my dear husband has multiple myeloma, we both are so worried, he is in a lot of pain too. we are waiting for more test but we both believe its not good. what should we do now? we can not sleep ,this thing has us both really worried

  26. Lisa on July 3, 2013 at 11:08 am said:

    Hi sue, my dad found out he had it 2.5 years ago. Initially we were all a mess and so heartbroken daily life was a real battle. Mum lost 10 kilos over night, I had night mares for months, my brother wouldn’t talk about it and dad was in a huge amount of pain and put on a brave face but his eyes said it all. After about 6 months of him being really sick at home because of his pain and treatment things picked up and kept picking up as time went on. His quality of life is great and now were fishing together and he is doing all the things he likes doing. Umm he just brought a new boat, he is 65. Your note really hit home with me and I hope I can help in some small way by saying please hang in there, do what ever you can to get by. Let your friends and family help you, fill the house or hospital room with people as a distraction or for support and just BREATH. I found reassurance in gaining knowledge as I had never heard of myeloma before and it settled me a little. Cook your husband his favourite food, get his favourite movies/books etc. sit outside in the sun and fresh air if possible and look after your self equally as well. Ask for help if you need it, get the courage up to ask your doctor anything you may be unsure of. Don’t worry if the house gets a bit messy for a while or the dishes are not done, just get through these next few weeks the best way you can and things will settle down, when you learn more it may reduce your initial shock. In the time since dads diagnosis treatment has improved a lot and is continuing to do so and there are a lot of very positive results. My mum kept saying in the beginning “it’s not good, it’s not good” and no it wasn’t but it is definitely a lot better than what we first thought. Another tip we learnt early was to let your doctors and nurses know about the pain levels.
    I really hope some of this may help you, I remember it like yesterday the way you are feeling now and it does eventually become easier even though I’m sure your finding that hard to believe. Simple things at the moment can make all the difference, have a laugh or a joke if you can , keep your head up and take deep breaths often.

  27. Elizabeth Bell on July 10, 2013 at 2:48 pm said:

    Thankyou for the information. I am grateful.

  28. preppie on July 23, 2013 at 5:25 am said:


    My mother-in-law was diagnosed with Stage III MM in October, 2013 along with complete renal failure. She has been on Valcade and her MM responded well, since her M protein counts significantly declined. The docs say that MM is in remission. She also gets haemodialysis at home three times a day.

    She was tolerating Valcade quite well initially, but she has deteriorated since. She had her last round of Valcade injections in April 2013, but ever since she has been suffering from explosive diarrhoea, vomiting, and complete loss of appetite. She vomits the moment she ingests solid food. She has lost a lot of weight and is just skin and bone. Her SGOT,/SPOT levels in the liver are abnormally high.

    Unlike others, she is in no pain. She is also pretty alert and coherent. She has had no symptoms of bone degeneration, or hypercalcaemia.

    The doctor is postponing her next round of Valcade because she is so weak. Does it mean the MM will come back? What happens in case of patients who cannot tolerate chemo? How long before MM comes back? What does high SGOT/SPOT mean?They ran a genetic test and found that she has the more aggressive kind of MM.

    Please give me any information you have on what we can expect. Doctors refuse to give any kind of prognosis.


    • Debbie Gallant on February 1, 2014 at 9:40 am said:

      Reading your letter about your mother in law is text to what my mom is going through. The vomiting and diarrhea and loss of appetite is clear to me now that is the disease. All you can do is find what they like to eat that stays down. My mom was diagnose April of 2013 and now at home with hospice. The most pain she has is sitting too long, lying in bed is better with the back pain. Chemo was way too hard on her and has lost 60 lbs. to date. That last 4 months have been the hardest on her.

  29. Barbi Wiktorski on August 19, 2013 at 2:57 pm said:

    Thank you everyone for the valuable info that has been shared on MM.

  30. Thank you first of all for this website and for sharing your stories, some of which must have been very hard to write. I am 61 and was diagnosed with Stage III MM in Feb. 2013 after suffering from collapsed vertebrae and renal failure. I never heard of MM before that and went thru the typical roller coster of emotions when the idea that I had an in curable disease finally sunk in. Always too busy with work and family to think something like this could happen. My first thoughts were for my husband and children and how this would upset them – that remains my foremost thought and is what gives me courage and strength as I go thru this journey. Was on target for standard treatment – four months of aggressive induction therapy and then the prep for high dose chemo/Auto stem cell transplant but despite repeated trys they could not mobilize the stem cells sufficiently to proceed. That is no longer an option for me.

    Shock and stunned as it seems that is what gives the longest survival times and isn’t that what we all hope for. My family and friends were devastated but I put on the brave face and continue to stay positive despite the many twists and turns of this beastly disease and plan on fighting this as long as I can, but know at some point the MM will win. I just don’t plan on making it easy for IT.

    I came across this website and found it to be very frank and open in discussing what the end stage of MM may be. It is not knowing which is frightening. I feel when the time comes I will be better prepared as will those I love so dearly. For all of you who have lost loved ones please know how much your care and love meant – I cannot imagine going thru this alone.

  31. I was diagnosed Mar of 2012. Had a polycytoma size and shape of my thumb inside the spinal column attached to T1 through T4 and pressing on my spinal cord. That was Sat. and the oncologist and neurosurgeon decided it should be removed immediately so I had emergency surgery ( 6 hrs) on Sunday. Spent a week in the hospital and came home to the care of my wonderful husband ( Saint Jim ) I call him. We have been married 57 Yrs. I got into remission after 6 mos of Velcade but it only lasted about 9 mos with the help of Revlimid which didn’t work well for me. I am now going back on Velcade & hope it works the second time. I am tired & weak right now because white cells are very low and have some back pain which is controlled W/ pain killers but don’t like to take them because don’t want to feel loopy. Have rejected Stem Cell treatment because of my age, 74. Doc at SCCA didn’t recommend it for me.

    • MMSupport on September 9, 2013 at 1:56 pm said:

      Hey Susan, Good for getting the 9 months! Were you able to be off treatment for that time?

      There are many more things to try now, that didn’t exist before a few years ago.

      Like it was for you, Revlimid was ineffective for me. I struggled through all the tx I had. If they worked, they didn’t last long. I found that I responded pretty well to dex alone, Velcade and Doxil and Melphalan (SCT).

      So, maybe you can add something to the Velcade, to help it work better, if it comes to that? You can ask your doc what other things you could try after that.

      Hang in there,

  32. Maryellenalipour on November 16, 2013 at 1:34 pm said:

    Susan, you never know how things will turn out, is right. My husband was diagnosed in 2001, at age 51. He is 63 now, on Revlamid/dex and is strong and healthy. He had a autologous stem cell transplant in 2002. He drove a taxi in the city ( much to his doctor’s dismay) up until 2 years ago. Find a multiple myeloma specialist. We went to Northwestern Hospital in Chicago. Find a MM support group, it helped us navigate all the information. The first four years or so saw more infections and a few trips to the emergency room, while dropping our kids off at relatives for the night. My husband has a on-going supply of antibiotics. He takes a couple if he feels an infection or cold coming on. It really helps. Stay positive. Blessings to you and your family.

  33. Margaret Rose on January 20, 2014 at 3:43 pm said:

    Just diagnosed with Myeloma on Jan 3. I’m waiting for a CT scan to find out if it is MM or ‘smoldering myeloma’. I’m 59. Thank you for all the information. As hard as it was to hear, I needed to know. I have to keep positive for my daughter. She is only 23 and I’m the only family she has. I pray I live enough good years to see her established and my pets to the end of their natural lives. I’m keeping a journal of the journey.

    • MMSupport on January 20, 2014 at 4:00 pm said:

      Please let us know the results of your tests. For what it’s worth, I am starting my 12th year of living with myeloma.


  34. Thank you for keeping this site up and growing. My own journey is much revealed on
    Multle Myeloma My Way
    . Please look at the oldest posts to read about stemcell transplants an other details of the ‘Full Monty’ from my own experience.
    Since my diagnosis in 2005, I have overcome two relapses and am now in remission.
    Nerve damage from my first tumor can only be controlled by continual medication. I found methadone to be the most effective and most days I am able to function without almost any outward sign of pain or difficulty.
    I will go join the Facebook group and look forward to being a part of your caring community.
    Gratefully, – Mark

  35. Kelle on March 20, 2014 at 6:33 am said:

    Hi All
    I have really enjoyed reading your experiences with Myeloma. It gives me hope that I might be able to get my husband into treatment before it’s too late. My husband was just diagnosed march 2 after going to the er with severe pain and ultimately a broken back. He had surgery as soon as they could get him in to secure the spine, but the left hip is in the same condition. That part was basic, since being released from the hospital we have had an insurance nightmare. The new blue cross policies only have 3 oncologist in our area that will take our new plan and 2 of them wouldn’t take my husband because blue cross won’t pay for Valcade. So Obama care will make sure we get birth control but not a life extending/saving cancer drug.
    Gary is 47 years old and was in great shape before Jan 10,2014, now the MRI shows multiple holes throughout the bones. He had two chemo treatments at the hospital and we are still waiting to get an appointment with an oncologist to start chemo. He has 7 days worth of pain meds left and his pain remains at a 3 or higher at all times. I am so frustrated and disappointed in blue cross and our new health care system.
    I have spent over 4 hours everyday since coming home from the hospital on the phone with blue cross and doctors offices trying to get him a pain management doc, new GP (since old one won’t take the new BC policy) and an Oncologist. He is supposed to be getting Velcade and cytoxen, I am so sad that all my time is spent fighting for him instead of taking care of him.
    At least I know by reading your posts that we have time to get treatment set up even with the runaround they keep giving me.
    Super frustrated Kelle

    • MMSupport on March 27, 2014 at 10:18 pm said:

      Hi Kelly – What state do you live in? Can you report this to the insurance commission, or whatever your state has? Also, can your Dr. help with an appeal? This is certainly medically necessary.
      Are there any trials that could offer your husband free treatment?
      What insurance did you have before?
      If it were me, I’d appeal and get the doctor to help.
      I had some issues early on with BCBSNC and thalidomide (it wasn’t in the formulary at all). It ended up being a higher copay, but I still got it. Just don’t give up.
      Where is your husband being seen?

  36. tracy on March 27, 2014 at 9:30 pm said:

    my wonderful mother was diagnosed last july :( shes 84, she had chemo shots , pills, radiation. she has fought. now shes home with hospice, like the other doctors, her dr wouldn’t give a time, but now she started throwing up last night , appetite is still good, but cant eat much, difficulty swallowing , creatinine was 4.94 , there is swelling in her legs, 35 % kidney failure. very weak, loose bowels not too bad with the memory loss tho, very fatigue and tired. I know shes in her last days / weeks but does anyone know about how long, what comes next

  37. brenda on April 5, 2014 at 7:46 pm said:

    My domestic partner was diagnosed with M.M 5 years ago , he went through chemo, stem cell transplant and nothing has worked, he is now in pain all the time with pressure headaches and bloody nose, his blood is thinning out and now they have found lesions on his kidneys, he has now stopped all treatments and letting it take it’s coarse. He’s tired of the pain, fatigue . He’s only 46 years old .

    • MMSupport on April 7, 2014 at 10:52 pm said:

      Dear Brenda,

      Please see if you can get some help for him from a local hospice organization so his pain can be managed. I can’t imagine how you both must be feeling.

      Take care,

  38. prabhakar on April 13, 2014 at 12:37 pm said:

    can you please suggest me – my father is having multiple myeloma in the last stage

    • MMSupport on May 4, 2014 at 1:20 pm said:

      As a patient myself, I can say that I hope to have my suffering at a minimum when it’s time. Whatever it takes to keep pain and suffering under control for the patient will also help the family, I believe.

  39. Mandy on April 20, 2014 at 5:21 am said:

    There’s nothing easy about the end. My dad was diagnosed in stage 4, nine years ago. He’s finally accepted hospice care, but is still fighting. He’s very light if on his feet at all. He’s stopped having bowels movements, probably from the pain meds. He gets them regularly even if he’s not asking, per hospice. It is excruciating. I’m so afraid of him suffering…….when he’s awake he still smiles though.

    • MMSupport on May 4, 2014 at 1:19 pm said:

      Hi Mandy, please stay in touch and let us know how you’re doing. We’ll be thinking of your dad. He sounds like a real trooper.

      • PATRICIA on June 10, 2014 at 12:15 pm said:


        • PATRICIA on June 10, 2014 at 12:24 pm said:

          HI MY MUM WAS DIOGNOSED MM 8 MONTHS AGO.S,HE HAS BEEN ON CEMO FOR 6MONTS THERE NOT GIVING HER ANYMORE TREATMENT SHE IN WELL JUST Abit tired.the thing i notice about her is she realy bad tempered.would anybody no if this is the steriod shes taken or is mm gone to her brain she is 89

          • MMSupport on June 13, 2014 at 10:38 pm said:

            Hi Patricia,

            Whenever I had to take steroids, I would be in a terrible mood! I got angry easily and it was not unusual for me to yell at people. There’s even something called steroid psychosis. It can be a very unpleasant drug, but it helped keep my MM under control for a long while.


  40. Laura on May 2, 2014 at 2:22 am said:

    My dad has mm and was told he has 80-90% of his bones infected. He just got admitted for low platelets and they are running tests on his kidneys and liver. We just found out he had mm after he got pneumonia March 22. He couldn’t have chemo treatment today because he is too weak and having double vision. Two days ago his dog got really sick and had to be put down. His voice is different and his eyes are sunk in his head. I can’t believe how out of it he is and he can barely walk. My poor dad! This is his third time with cancer. Prostate, skin, and now this. He is only 71. His wife is doing everything she can but he has a very bad attitude and is very tired. I’m really scared and sad. My eyes won’t stop watering. I am praying for a miracle and hoping he will not have too much pain.

    • MMSupport on May 4, 2014 at 1:22 pm said:

      Dear Laura,

      We will keep you and your dad in our thoughts. It’s very important to keep pain under control. Whatever it takes. Is your dad at home?


      • Laura on May 4, 2014 at 9:08 pm said:

        He is in a care facility now. =( Its a pretty nice place but you can hear patients yelling sometimes.

  41. Thanks to my father who shared with me concerning this webpage, this weblog is truly

  42. Tina Smith on May 4, 2014 at 12:57 pm said:

    My mum died of mm last Monday 28th April 2014. She had mm for 6 years, developed a stroke and the contracted pneumonia. My mum was 77 years old. I know how you feel Laura, it is hard to accept a parent dying, my dad feels as if he has lost his right arm, his soul mate, they had been married for almost 56 years and had been together since mum was 14. Both dad and I were with her when she died.

    • MMSupport on May 4, 2014 at 1:17 pm said:

      I’m so sorry for your loss, Tina. I always say that this cancer is so much harder for the families than it is for those of us who have to deal with it. I think that can be said for almost any disease. Please take care of yourself and your dad.

    • Laura on May 4, 2014 at 9:16 pm said:

      I’m sorry for you and your dad and family! It is difficult to tell people in person what is going on because I will start to cry. I just want to see him back in his clothes and wanting to eat a pizza. I have two young children who don’t understand what is happening. My brother wants to talk about it all the time and I just want to relax and hope for dad to get better. This is so hard and when people ask how you are doing? Inside I say Terrible! outside I say okay. Every time the phone rings I flinch. I’m scared to hear about something bad has happened. I hope your dad and you feel better soon. It sounds like she found the MM early on.

  43. Laura on May 4, 2014 at 9:06 pm said:

    My dad is now in convalescent care facility that is hopefully going to help him regain strength so he can begin chemo treatments again. He spent Thursday-Saturday in the hospital getting platelets and blood. One of the doctors at the hospital told us to let him eat and drink anything he wants and to be prepared. I can’t believe how fast he is going! Today he was coughing so hard and was very tired. Thank you for your replies and I am glad to have found this website.

  44. Laura on June 4, 2014 at 12:31 am said:

    My dad died May 8, 2014. He went in to get blood and ended up in ICU. Then he passed away that night. Someone told me that MM is the silent killer and it is. So fast. Miss him so much.

  45. Thafu on June 22, 2014 at 5:04 am said:

    I’m so greatful to find out about this webpage,my husband was diagnosed in 2009 ,was prescribed Zometa monthly and Thalidomide,and had several bone dislocations in ribs ,collarbones and vetebrae,towards the end of his life he develops painless tumours or lesions around the head ,neck and forehead ,he was highly stressed one day he lost control for both limbs and was quadriplegic bedridden,we both understood the complications of the desease,but when he was serious in his illness he thought the disease can be TRADITIONALLY cured at that time he was most of the time confused,our religion did not allow that and we have never use that before therefore I refused that type of healing ,,that makes him to develop hatred to me until his last day June 22 2012,which was due to pneumonia and kidney failure,ALL along I’ve been having the guilt that I. Failed my husband,by not allowing that type of healing but now I’m relieved to read about all the signs that I’ve seen from my loving husband I’m relieved and I realy say MAY HIS SOUl REST IN PEACE, it was his time,today is the 22 June his second year being relieved from pains and I’m also relieved. Thank you so much.


    • MMSupport on July 24, 2014 at 6:51 am said:

      I know exactly how you feel… I’m always waiting for the other shoe to drop, too. It’s nerve wracking!

  47. Ally on July 24, 2014 at 6:33 am said:

    I found this article last year when I was struggling the fact knowing that I’m gonna lose my grandpa to this disease while me and mom took care of him for sometime in the last 2 years I’m sad to write this to you but my grandpa died 3 days ago he is pain free now may his soul rest in peace.

    I remembered this article and I had to thank you for helping us.

  48. sheila on August 21, 2014 at 3:17 pm said:

    I am so thankful for this website. My dear Mom was diagnosed with MM about 6 years ago. She was in great health and always careful to exercise and eat right. She did not understand why she had gotten MM. Wondered over and over again what she had done wrong. She has been in and out of the hospital over the last 4 years with different problems – fluid in the lungs, infections in the portal for kidney treatment/dialysis, internal bleeding/poisoning from blood thinner, etc. She lost over 30 pounds over several years and is now 101 pounds. Over last year she has developed heart rhythm problems and recently was in hospital with pneumonia and serious infection. She has become extremely confused recently claiming she needs to go “home” to take care of my Dad who died about 7 years ago. She has developed diarrhea, doesn’t always want to eat, and sometimes sleeps all day and night and then sometimes wants to stay up. Doctor told us in March that we should be ready. She goes to Dialysis three days a week but this week has tried to get out of her chair and to walk off. Before she could not even stand. The last month since being home she has gained 10 pounds and is able to stand up. She complains of pain in her back and legs and yesterday was very nervous. She told me she had been “home” yesterday and seen my Dad. She has been seeing people who are dead since March. She has been with us for almost a year. It has very hard to watch her get worse by the day. I don’t know whether this is normal or not. I am constantly on pins and needles not knowing what will happen from day to day. yesterday she refused to go in the ambulance and I had to come and ride with her. The Dialysis staff who have been wonderful and the ambulance staff were besides themselves. mom was always super kind to everyone and she was saying weird things about them….. I am confused!

    Thanks Sheila

  49. I am a New Zealander desperately trying to find out what comes next for my dad who was diagnosed with MM in Jan 2013. He is 86 and that is a good long life but this cancer has been so awful to watch him go through. He is a very dignified man who until his diagnosis was caring for my mum (wife of 58 years) who has brain damage from a stroke and my down syndrome/autistic brother. In NZ there is very little information available but many of the treatments described by people on this site have been used on dad. He has had blood transfusions, chemo, a treatment called pemidrenate (sorry no idea how to spell it) and 2 months ago radiation treatment to manage the terrible pain. He is currently being taken off dexamethasone but is taking a course of thalidomide ? His spine now looks like swiss cheese and we are out of options. After being a fit and healthy man right through to diagnosis on MM he is now I believe in final stages. My sister has given up her job and is nursing him at home (honouring his wishes) along with caring for my mum and brother and I am travelling 3 hours every Friday after work and then driving back late on Sunday night to be back for work on Monday. Dad has in the last week developed bowel leakage and as he is wheelchair bound this is becoming incredibly tough.
    We do not seem to be offered any solutions for this and I am wondering if anyone has any ideas? The pain medication has caused constipation which has no doubt led to the problem but of all the things that he has had to deal with this is causing him the most distress.
    Thanks to all the people who have told their stories it has been great to know that we are not taking this journey alone.

    • MMSupport on September 30, 2014 at 11:41 pm said:


      I’m so sorry it’s taken me so long to reply. I’m glad you’ve found something useful on this site.

      There are so many people who suffer from constipation from pain meds or some of the MM treatments. I’ve heard that drinking plenty of water and maintaining a decent fiber intake is the best way to deal with it, but many folks use something like Senokot. Do you have Senokot in New Zealand?


  50. Pamela Stottlemyer on September 26, 2014 at 12:58 pm said:

    ive had m m, since 2006 it’s been a long hard road. a stem cell transplant. Thalomid,which almost killed me, then relvimid, zometa. in Jan i broke both my femurs, surgeons said my bones are pretty much shot. right now i am on know meds. dr. just doing blood tests and watching. i have had many infections. i need a brake from all the meds. and sick ness.i am pretty strong but my stength is running out.plus in 2000 i had breast cancer lost my left breast.and i also have skin cancer. really very tired of all it.

    • MMSupport on September 26, 2014 at 1:57 pm said:

      Hi Pamela,

      I’m sorry you’re having a hard time, but I know exactly what you mean. Sometimes is just wears me out right to my limit. Please just make sure you get plenty of rest and drink plenty of water. Eat right and practice good handwashing to stay as healthy as you can. Sometimes it’s hard. I’m glad you’re hanging in there!


  51. Gwenda on October 13, 2014 at 1:45 am said:

    Hi Beth,

    My Mother in law has been suffering from MM for the past 8 years. She has done the stem cell transplant which lasted for a year and then chemo .. since the chemo her health has been deteriorating. Just about a month back , she was having excessive diarrhoea and vomiting. Looking at her condition which didn’t change , she was quickly admitted in the hospital.
    Doctors said that her kidney was affected at that point and her blood count was 8.2. They started treating her kidney , and her potassium level was rather low. IVs were given with potassium in it. But now , she is having her confusion and thinks that she is still working ( left working about 10 years ago) – on and off
    Her diarrhoea has stopped now, but her vomiting is still there. She does not have broken bones but she has stopped walking and mostly on wheel chair and she can still sit up.
    My question is , i am not sure whether this stage of confusion is a sign of the last days or this can prolong for few years more?

    As of now, her blood level , and other blood directions are still okay including the calcium level. What can we anticipate after this?

    The doctor does not say anything about the time we have left with her. She is still in the hospital and the whole family is going through a roller coaster ride during this time… would you please advise on this situation? Thanks!

    • MMSupport on November 9, 2014 at 9:08 pm said:

      Normally I get messages emailed to me when someone comments, but I missed yours! I’m so sorry about that.

      I wish I could tell you what to expect. I know some time has passed, and I hope your mother-in-law has gotten better. I hope you’ll let us know how she’s doing.

      I’m going to see if I can ask one of my nurse friends about this.

      Take care

  52. edwina hutchison on November 13, 2014 at 12:01 am said:

    My husband age 59 was recently diagnosed with this horrible disease on 11/4. Developed pneumonia in June 2014. GI bleed and hospitalized in August 2014 diagnosed with anemia with high protein levels. Symptoms before being diagnosed with mm fatigue, joint pain back pain, neuropathy and severe headaches. hospitalizedsupplies November 4th four rounds of chemotherapy discharged from the hospital after 4 days. He is scheduled to start out patient chemotherapy this Friday. What side effects can he expect from Valcade. Is anyone on alternative medicine for pain control and to stimulate their appetite?

    • MMSupport on November 25, 2014 at 4:26 pm said:

      Hi – How’s your husband doing on Velcade? I thought it was one of the easier treatments. I just had hives, so I needed to get benedryl in my IV before having the Velcade injection. That was before they had the sub-cutaneous injections, so it was all done by IV. I’m not sure how they’d do it now. Tell him not to drive if they’re going to do that. It made me very drowsy.

      I never had issues with appetite!

      Pain – I have not had pain to the extent that I’ve had to do much about it. I’m sorry I can’t help there.


  53. Lena Jager on February 18, 2015 at 11:30 pm said:

    For 6 years we have lived with this cancer. I say we…but it is my husband who is now at the end of his life. His kidneys and heart are both in bad shape. I watch his confusion get worse daily. I have read the article several times and am so happy that someone is brave enough to tell the detail of the “end of life”
    It helps me. Thank you for sharing this difficult topic. I know a little more now what to expect as I see his health go down hill daily

  54. dedra cassante on April 21, 2015 at 11:15 pm said:

    I have noticed through my research and my experience with my Mother in law’s multiple myeloma that if you suffer from chronic kidney diease- it says you will die pain free, but if you are not then Multiple Myeloma can be painful in death. The radiation is key for pain before final days, either that or morphine.

  55. Virginia O on October 21, 2015 at 9:19 pm said:

    I was having shortness of breath for about two weeks when it progressively became worse until I couldn’t catch my breath and passed out for just a few seconds or so. I had my husband take me to the ER and to make a long story short, I had multiple clots in my lungs. I was admitted to ICU , was on Heparin. They did a Doppler on my legs and there was no evidence of blood clots there. I was sent to the step down unit still on Heparin and started on xralta(SP ?) and despite this had the same episode. Was shipped back to ICU and had CT of abdomen which was negative for tumors or clots. Was shipped to bigger hospital but nothing different was to be done. Was kept on heparin and started on Coumadin which I will be on the rest of my life.The oncologist found monoclonal gammopathy . After discharge I had a bone marrow biosy and now I am found to have mm. I was told it is a non aggressive type and I am to meet with the Dr next week. I was told on the phone there are treatments for it. Right now I am doing fine except for different locations of pain which I can tolerate. I don’t want to do anything that will make e feel bad or look bad so I don’t know what to expect at this point. Will write whaat happens at my appy next week

  56. Willie Simuel on November 25, 2015 at 8:22 am said:

    I was diagnosed with MM in March 2012 at the age of 46 and had a bone marrow transplant in Oct 2012. Since then I have attained remission and am currently taking Revlimid 10mg on a daily basis. Revlimid has side effects and daily I deal with residual bone pain, fatigue and neuropathy. As several have mentioned earlier this site is useful because it goes where doctors often do not.
    There are so many factors affecting a prognosis, and with newer treatment options I hope that for me and so many others MM will simply be a manageable
    chronic condition. I believe knowledge is power. The more I know about the disease and possible complications the better I can fight it. Thoughts and prayers to all.

  57. Nancy Cole on December 7, 2015 at 1:04 am said:

    I was diagnose with mm/plasma cell leukemia (which is very rare) in 2010 at the age of 57. I had a tandem auto SCTs in Jan2011. This was vey difficult but doctors said it was my only chance to survive. I started Revlimid 10mg within the 100 days post transplant. I struggled the rest of the year but by the end of 2011 I was starting to live a fairly normal life again. My husband and I love to travel and we were able to do it again. In June of 2013 the Revlimid stopped working so I began Velcade injections under the skin. This was a much better drug for me with few side effects. The worst being neuropathy. Again my quality of life improved and I enjoyed a near normal life for almost 2 more years. I believe in staying in good physical condition so I continued to exercise regularly and was careful about my diet and hygiene. In Jan of 2015 I somehow got pneumonia and was hospitalized for 4 days. I recovered but had to skip several treatments due to low blood count. My counts fluctuated for months until I needed a change of treatment again. I am now on Krypolis 2x/wk for 4 wk cycle and Revlimid 28 day cycle and 40 mg dex weekly. It has been an adjustment from maintenance doses. I am tired and fatigued. Doctors are considering option of an allo SCT for me. This is risky and very hard to do. I don’t know whether to go this route or continue with drug treatments, which I might eventually exhaust. I write this to give others hope. I know a cure must be close. I pray for one each day. Four new drugs were approved for mm this year. Two of them in Nov 2015 this year. I have beat the odds so far and will keep on fighting, trying to make the best informed decisions I can. I am grateful to my doctors in the Phoenix area who I believe are the best, world class. Also to my husband who is my best friend and has been with me through all of this. I could not do this without his love, patience and support.

  58. Kathleen on December 23, 2015 at 12:00 pm said:

    I was diagnosed with MM yesterday. It is in early stages. I am looking at quality of life and read that so many of the chemo meds have bad side effects. I recently watched the docu-series on the internet, The Truth About Cancer, and was very encouraged about possible treatments that don’t involve chemo. MM wasn’t mentioned so I am not sure what treatments to look into for me, but want to try detox such as colon and liver cleanses and ways to strengthen my immune system. Bill Henderson’s book, Cancer-Free, also has many ideas. Has anyone thought of going this route or have actually found a way to avoid chemo for MM?

    Thanks for any comments.

    I was diagnosed with breast cancer 17 years ago and treated it with mistletoe injections which were very successful. I also have a positive attitude and spiritual practice that support me.

    • MMSupport on February 9, 2016 at 4:05 pm said:


      It largely depends on the type of MM you have. Some people have more aggressive MM than others. Some have been able to survive many years without treatment. Have you read Margaret’s blog? http://margaret.healthblogs.org

      I started out the way you did. I tried acupuncture, detox, stopped sugar, did reiki, meditation, and loads of other stuff. I still ended up having a all of the available treatments at the time and a stem cell transplant, but at least didn’t have to do it right away. I have now surpassed the 13 year survival mark.


    • MMSupport on February 9, 2016 at 4:07 pm said:

      I was in such a rush! I’m sorry! I wanted to also say that I am terribly sorry about your finding out you have MM. Please let me know how you’re doing now.

  59. Nathalie Richardson on August 15, 2016 at 3:17 am said:

    I HATE this disease!! My husband was diagnosed on New Year’s Eve this past year and died on May 2, 2016…….He received a complete course of RVD therapy and while waiting to undergo stem cell transplant contracted pneumonia, released to come home and in a matter of a few days I rushed him back to the ER and long story short found it had spread to his small intestine….!?? The surgeon, ( who by the way was a real jerk ) said they had never seen anything like it before…….at first they thought it was melanoma………we had him transferred from Ruby W.VU to OSU but nothing could be done. I am angry at his mm doctor because treatment wasn’t started until THREE weeks after his diagnoses……when I asked him why he said, “I was on vacation”………….REALLY?? Now my husband is gone………officially due to respiratory failure due to mm……….I am DEVASTATED………

  60. Chris A on October 16, 2016 at 2:11 pm said:

    Okay where to begin. A few months ago I got pneumonia. After that ended a couple weeks later, I got symptoms of what appeared to be diabetes but that didn’t feel right to me. I was always thirsty, but constantly had to urinate. I was getting dehydrated, skin salty but my urine was clear. Weight loss kicked in and I lost 35 lbs. Always drousy and then, exhaustion. Most of this happened at work because when at home, I rested and slept.

    Finally, I went to the E.R. They ran the bloodtests and the doc at the hospital gave me the answer expected…you’re perfectly fine. The results indicated otherwise. So I examined all the different words and started to search with my friend Dr. Google. I then came to the conclusion of MM. My electrolytes were low. The AGap test ranged from 5-12….mine was at a 1.5. Doctor looked me right in the eye and said my electrolytes were normal. The other adverse results, my Co2 is max at a 30, BUN is at 9, calcium iodized is low, Chloride is high, lymph absolute is almost low, eos is at the peak, MPV (autoimmune I think) is high, mch is almost passed high and finally, the Imm gran and Imm gran absolute are high, which are enlarged plasma cells in the bone marrow.

    Alrighty, more symotoms than I can count really. They come and go. Pupils occasionally turn yellow, had grayish tint on skin, rash for 6 months, spleen has hurt, kidneys are failing constantly, back pain and spine pain, whole body ache….Inside my bones, gout, collarbone felt like it snapoed for a week, shoulder and bones around that area feel almost immovable yet work calls, blood clot in neck region and many more ailments.

    Finally though, I have not been diagnosed as their needs to be more tests. I do feel certain that what I have come to understand with what is happening along with the medical journals I’ve educated myself with prior to now haven’t led me astray and into a hysterical delirium of sorts. What I do know is that at times I am very sick, however I have started to alter my lifestyle and eating habits to embrace and balance out some of the things that hold me back or hinder with sicknesses. Any or all feedback would be greatly appreciated as well as cherished in my memory until I can no longer hear a heartbeat. I will forever, remain strong and scared or fearful, I am not. I’ll smile and march onwards in my youth, 37 just seems an anomoly for this to challenge someone.

  61. MMSupport on October 18, 2016 at 9:50 am said:

    Have you had a blood test for total proteins? My best advice is to get a different doctor, if you can.

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