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Thread: Can someone describe end stage myeloma for me?

  1. #21
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    Dad has decided to stop fighting, at the doctors recommendation. He was too weak to go to the doctor or even speak to him on the phone yesterday so mum spoke to him. He advised that dad should stop treatment as his quality of life is non existent and it clearly isn't working (he didn't word it like that though).

    Dad is a lot calmer now and more relaxed. He's lost his fear of dying and is at peace with what is to come. We're all there all the time, taking turns to spend time with him. He sleeps most of the time now, when he does wake up he is very emotional and cries a lot. He is sad that he has to leave us, especially mum, but he's not scared anymore.

    He's told us what he wants for his funeral, where he wants it, the hymns he wants etc. We will respect his wishes.

    Now we just enjoy the days we have left with him, and hope that his passing is peaceful.

  2. #22
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    I lost my dad to multiple myeloma on May 29, 2012. He has been fighting it for 10 years. He had taken chemotherapy for years and at one point was told he was in remission. He outlived my mother by 6 months and 17 days. My mother had diabetes and heart problems. She had pneumonia and passed away in a hospital. She wanted to go first and my dad held on for her. He had lost so much weight, he was skin and bones. He developed colon cancer and prostate cancer. He took medication for his cancer and Aridia to strenghten his bones. He also suffered from diverticulitus and was hospitalized about one month prior to his passing. He was there for two weeks on antibiotics and his blood counts were low. They were giving him platelets and alternating with whole blood. He was discharged from the hospital and was given blood just prior to leaving the hospital to go home. He was not home 12 hours before he developed a fever and went back to the hospital to be told he had pneumonia. While they were doing a CT scan, he was pulled by the arm and his whole arm turned black and blue and was swollen. We were very upset and told the nurses that something was wrong with his arm. We kept after them for hours until they did an x-ray. It was not broken but the trauma of them pulling on his arm caused the bruising. His skin was so frail, almost paperlike. His legs were swollen, he wasn't eating, or drinking hardly at all. He was constipated and kept feeling like he needed to potty. His blood pressure was very low, he was diabetic so his sugar was low too. On Friday night, he wanted to potty and they put him on the potty. He proceeded to pass out and they had to call some type of code, not a blue but an emergency code. It took them some time to wake him up, trying to bring his blood pressure back up. The personnel were panicked, and seemed unsure of what to do. My sister was there alone and she was very upset. She called for her husband and son, and they rushed up to the hospital. Once they got him stable again, he was just worn out and went to sleep. I went up the next morning to see him and he just didn't seem right. I had just seen him three days earlier and he was upset because he had been trying to get some help. He said he had been on the potty for an hour or more. I talked to the nurse and she got him some help. He was carrying on with the nurses, talking to them and explaining his anger at what had happened to him. He was very verbal, and seemed okay when I left. What a difference I saw on Saturday. He was very drowsy, had an oxygen mask on and seemed to be in a lot of pain. The nurse explained about the code and said he could not get out of bed. She explained that with his blood pressure so low and his sitting up to potty, his blood went to his feet and he passed out. After an hour or so had passed, he decided to go potty again. I told my sister that the nurse had said he could not get out of bed. She went and asked the aide if he coudl get up, and she said yes. My brother-in-law and nephew helped him to the potty and he passed out again. They called a code again and everyone came running again. The head nurse came in screaming "Who let him get up, who got him out of bed" and we said the aide said he could. Boy was she mad. They got him stable again and he was pretty tired and worn out. We decided to let him rest and told the nurse we would be back to check on him. She told us they were moving him to ICU because he needed to be in the critical care unit. That was on Saturday. On Sunday, the Infectious disease doctor, who was treating him for the pneumonia, told us the antibiotics they were treating him with were not working. The oncologist who was on call told us all the blood transfustions and platelets they were giving him were not helping. The multiple myeloma had taken over and was destroying the blood and platelets just as fast as they were giving them to him. His pain level had risen, his kidneys were not working, his blood pressure was dropping, his oxygen level was dropping, and there was nothing more they could do. We told him we didn't want him in pain. We didn't want to see him suffering anymore. They had already put in a pic (??) line to test his blood and give him medication thru. His veins were so blown out by this point. We called the family and told them what the doctors had told us. We told them if they wanted to see him, they needed to come now. We held vigil with him, someone with him at all times. The ICU people were very professional, and made me feel that he was getting excellent care. They explained everything they were doing for him. I told our nurse that I appreciated her work and was very glad she was there. She touched my shoulder and said I should pray for my dad. I told her I definitely was. My dad passed away at 2:00 on Tuesday morning. My sister and brother were in the waiting room and were called in before he died. I know he is in a much better place, with my mom, no pain, no worries, no more needles, medicines or tests. I will miss him always. Sunday is Father's Day, the first one without my dad in my 55 years of life. I am not looking forward to it but I plan to visit him and my mom at the cemetery. It will never be the same, but I am looking forward to seeing them when my time comes. Multiple myeloma is a terrible, painful and horrible disease. My prayer is for someone to come up with a cure so that no other son or daughter, wife or husband, grandson or granddaughter, will ever have to see their loved one fade away to skin and bones, and have the suffering my dad endured. My dad is my hero, he fought the good fight and hung in through the war, but became a casualty of this dreaded disease. Thank you for listening. I have needed to say this and didn't know where I could until I found this site. Thank you again.

  3. #23
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    I am so sorry you are going through this. I just lost my dad on May 29th of this year and it is very difficult for me. My only comfort is my faith and the knowing that he is no longer suffering. He is with my mom, happy and healthy, renewed in his new life. I know I will see him someday. May God give you comfort and bless you and your family. I will pray for you and your family and all the others who have to watch their loved ones suffer from this terrible disease. God bless you and your dad.

  4. #24
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    Dad lost his fight Saturday just gone. He passed away peacefully at home about 1am. I am very angry for both us and him. He has been denied at least another 20 years of life and we have been deprived of those 20 years with our darling dad. It's not fair. He was gone just 5 weeks after treatment stopped. We had hoped that he would start to feel better at least for a short while once the chemo worked its way out of his body, but it was not to be.

    We're all devastated. Multiple Myeloma is a cruel bitch of a disease.

  5. #25
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    Hi again Cath, I also lost my dad. He passed on 22ND July. dad really wanted to stay at home but he would no longer swallow his pain meds and wouldn't let me change him, he had so much pride. He went into palliative care and passed away 5 days later. Putting him in palliative care was the hardest decision I have ever made. I knew he would be more comfortable there but also knew he would never be Coming home again. I feel the same, 64 is too young. My kids are going to miss out on having a grandad. I miss him everyday. I cry everyday. I feel guilty for not being able to care for him until the end. my dad had a very.hard last 3 months in and out of hospital, pneumonia and chemo. He stopped eating a month before he passed and I think he knew he couldn't fight it anymore and have up. It was so hard to watch, my dad was so strong and always a fighter. this battle he couldn't win. Thoughts are with you Cath and anyone who is fighting this and their families. I really hope there is a better place they go to.

  6. #26
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    like many of you i have been watching my strong, wonderful husband deteriorate even more . after 15 years of fighting this disease,horrible treatments - he has been on them all - a failed stem cell transplant, 2 years ago the MM came back with a vengeance. all treatments have failed, his kidneys are failing too, and we have decided it is time to let go. we are are peace with this decision and he is home with us comfortable and less bothered by all the drs and hospital employees who were treating him like a number, not a person. we are spending quality time together and creating many lasting memories. my question is how long does this stage last? some days are really difficult . i always live like he was living. now he is really dying. this is very painful for all of us as prepared as we are.

  7. #27
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    My heart goes out to you mdz5111 and all loved ones dealing with the wrath of MM. My mother was diagnosed 1/6/12 and died comfortably in the hospital on 8/10/12. The last 4-5 weeks were a huge struggle for her. She had a build up of 4 liters of fluid in 1 lung and had that removed.. She lost a significant amount of weight, she lost her will to eat and was struck with explosive diarrhea, nose bleeds, vomiting (because her stomach was so empty) she would only produce bile.... her liver started to fail and she turned yellow (eyes and skin). All of this while being the "Mother of the Bride". He goal was to make it to my August 4th wedding and SHE DID! She danced with my husband and then "called it a night". She was exhausted but lit up inside at the same time. She gave it her all for those 7 months, all of the doctors knew... SHE HAD A WEDDING TO GO TO!

    During the last 2 weeks we spent close quality time together. I gave her a pedicure (she had never had one before). Massaged her legs with lotion, we laughed and we cried. It was the closest we've ever been. It was my way of "getting closure" before I needed it. If that makes any sense..?

    My father all the while was in denial, he thought she just needed to eat and "put some weight on". I couldn't break his heart and tell him she was dying. I left that to the doctors and specialist. But I think deep down inside, he knew.

    I even think my mother knew, how could she not know. She even said one day: "where are my boobs"? We laughed... and said " now you can buy those sexy lace ones you like"... we kept it light hearted and silly. I think she appreciated it.

    I think you are wise staying at home and enjoying each others company. If you know your husband and can read him, his eyes will tell you. I could see in my mothers eyes July 20th that "she wasn't coming back from this" and the end was near. That was 3 weeks.

    My heart goes out to you and your family.
    Hugs, Jennifer

  8. #28
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    mdz511 how are you travelling? It's been just over 2 months since we lost dad at just 63 years of age to this awful disease. How is your husband? You ask how long the final stages last, I guess it depends, as everyone is different. By the time dad decided to stop fighting it he was only "holding the line", in the doctors words. He had to stop treatment as his quality of life was non existent - couldn't eat, explosive diarroheah constantly and was bed ridden. As soon as treatment stopped the MM took over and coupled with kidney failure (that's how he was originally diagnosed with MM in March 2011, when his kidneys failed) he was gone in just 5 weeks. The last 3 weeks were the worst, he had a lot of pain but it was brought under control fairly quickly and the palliative care team showed us how to administer top up injections, and he was connected to a pump that delivered continuous pain relief. Fentanyl was the pain control drug - along with some anti anxiety, anti nausea and others.

    Deb, my heart goes out to you - please don't feel guilty for having to put your dad into hospice care...if he wouldn't let you change him and couldn't take his pain meds what choice did you have? Honestly? None that I can see. I do understand why you feel the way you do though, but I also think you're being very hard on yourself (

    Jennifer, my heart goes out to you also, I'm so very sorry (

    Love and hugs to all xo

  9. #29
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    Unhappy My daddy

    My dad is 57 and has MM for four and a half years. His cancer seems to normally respond well to valcade but it tears him up while he is on it. He just took a treatment three days ago and was admitted into the hospital today for dehydration. When he is taking treatment he cannot eat or drink much of anything because it makes him so sick. Many times he has had pancreatic attacks from the build up of the toxins from the chemo.

    He has decided that he no longer wants to take valcade because his quality of life is poor on the medication. I am scared. He is one of the main people in my life. I have six children whom love him truly, with all their little hearts. They are so close to him.

    I would like to know how long after he stops taking the valcade is he going to start experiencing really horrible effects from the cancer. Right now, most of his sickness seems to stem from the chemo. I just don't know how I will be able to keep on after he is gone. He has been my rock. How will I be able to continue on, be there for my babies, and be able to greive?

  10. #30
    Administrator Top User Didee's Avatar
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    Hello. I am sorry to read about your Dad.
    What does his Oncologist say?
    Has he any more treatment paths he can take?
    A good idea too is to get a second or even third opinion to make sure all options are covered.

    It is so hard watching someone you love going through something like this and being so frustrated that there is nothing we can do to help them and knowing that we will lose them in time.
    I can not answer your question as my cancer is/was a different one.
    The problem too is that what happens to someone on the same medications will have different experiences as we are all so different as to how we react with chemo. Some may enjoy a lot more time than another does so no Doctor or any person can really answer your question due to this reason.

    We have to treasure every day we have with them, make memories and focus on today.
    Aussie, age 59
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo or hap transplant. Onc says long remission was good. Still very fixable. All I needed to hear. I am pumped and ready. BRING IT ON

 

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