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Thread: Can someone describe end stage myeloma for me?

  1. #11
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Hello. Welcome but I am sorry you have to be here.
    We can't say how long he will be with you. I wish we all had crystal balls so it could tell us.
    This is so individual to every person on this path.
    There are general signs though


    I can't help you. I wish I could
    Aussie, age 61
    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 transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  2. #12
    Newbie New User
    Join Date
    May 2012
    My dad is almost 64 and was diagnosed almost 4 years ago. He had a stem cell transplant which kept him in remission for 2 years. Unfortunately, it has come back. He was on revlamid and dexamethasone but was not helping so the doctors decided to put him on velcade once a week for 4 weeks then one week off. He has just finished his 4th week (1st cycle). He sounds very similar to your father Cath. The velcade seems to be doing more harm than good. After his 1st go of velcade he ended up with a chest infection and in hospital for 5 days but they wanted him to continue with the treatment. After his chemo, he spends 3 days in bed and will not eat anything and only drink small amounts of fluid. He only gets up to go to the toilet. Three days after his chemo he takes dexamethasone which helps him feel a bit better. He has a lot of back pain which is managed by oral morphine. I am very concerned that the velcade is doing more damage than good. The doctors insist that he keeps on it even with all the side effects he is having. The doctors will not tell us a lot but I wonder if anyone else has the same side effects on velcade. My father lives with myself, my husband and our two small children. It is very hard to watch him go from a strong man to someone so weak and sick all the time. Would like to hear of other peoples stories

  3. #13
    Newbie Regular User
    Join Date
    May 2012
    Hi Deb, I'm sorry you're going through this as well. I have heard quite a few cases of Velcade making the MM sufferer's quality of life almost non existent, a lot of people don't tolerate it well. Dad has severe diarroheah, lethargy, fatigue, weakness, nausea and the list goes on. He sleeps almost all the time as has no quality of life whatsoever.

    Dad isn't a candiadate for either a bone marrow or stem cell transplant, because of the damage the MM has done to his kidneys and liver. The doctor told us yesterday that the MM is starting to get out of control and that they are considering other options to treat it. Dad doesn't have much time left, and mum and I wonder if it's worth all the suffering he goes through to start another course of treatment for this bastard of a disease. The last few days he's been in relatively good spirits, the best he's been in a long time - because he just finished his last round of Velcade. Of course, the decision is dad's and whatever he decides he's got our full support.

    Mum does such a stellar job of caring for him at home, so in that respect he's very lucky. His personality is starting to change though, which is apparently one sign of the end stages of the MM

  4. #14
    Newbie New User
    Join Date
    May 2012
    I was diagnosed with MM in June 09. I started high doses of Revlimid and steroids for 4 months followed by two stem cell transplants. I did
    very well. I began a low dose of Revlimid with no steroids and have been on that for about 18 months. I am starting to have some neuropathy which is uncomfortable but not painful yet. I am taking Gabapentin for that. I believe that the transplants were very helpful in keeping me at my current condition. I feel pretty much like I did before I was diagnosed. I saw the doctor yesterday and everything looks great. I had to really pin him down but he stills says that if the disease takes it's course, I have 4 to 5 years.

    Anyone considering a stem cell transplant should really think about having one. It is rare to have to have two. They are not painful. My hardest problem was the boredom of staying in the hospital for 3 weeks.

  5. #15
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Blog Entries
    Hi becky377

    thanks for dropping in with some positive news. The fact is that there are more and more survivors of MM every year and we are getting better at treating it. It does help to find it early enough so that stem cell transplant is an option.

    I had to really pin him down but he stills says that if the disease takes it's course, I have 4 to 5 years.
    I hope you prove him wrong and go way past that

    Good luck and thanks again.
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  6. #16
    Newbie New User
    Join Date
    May 2012
    Cath72 I am so sorry. But this sounds so familiar. My husband was diagnosed in Jan. 2012 after nearly dying. He is 62 years old and we thought he had a bad flu bug. I was told to call all the family in and I was later told by the doctor that only about 15% of people survive when they are as ill as he was. Prior to this illness his only symptom was, he seemed more tired and he got colds more often. In the hospital his white blood count was so low they told me they had never seen a count that low. That was when they did a marrow biopsy and we found out about MM. Anyway, after a month in the hospital he did survive and he is being treated with Velcade and Dex. He has been on it for a few months now. All went well at first but last weekend he was in such pain with neuropathy down his legs and feet he couldn't move. This weekend he has been in bed for 3 days with severe diarrhea. He has lost his appetite and can hardly get off the chair. He doesn't have a fever and that is all the doctor tells us to watch for. He is looking at getting a Bone Marrow transplant, but the way he feels right now he cannot imagine going through it! Good luck. This is the most terrible disease that you never hear about until it effects your family!

  7. #17
    Newbie Regular User
    Join Date
    May 2012
    Ginger wow, your husbands story is eerily similar to my dad's. He has just started another round of Velcade and is again sick, lethargic, weak, has no appetite or interest in anything. He can't go on like this much longer.

    This thing is a bastard, so cruel.

    Are you caring for your husband at home? How are you coping with that? I've resigned from my job to enable me to help mum because she's caring for dad at home. I'm lucky my partner is supportive of me doing this, I couldn't do it if it weren't for him.

  8. #18
    Newbie New User
    Join Date
    May 2012
    I feel for anyone with this disease and their families. Dad has had it for 4 years and all the research I do I still cannot understand it all. I took dad to his specialist on Tuesday and they told us the myeloma has come back quite aggressively. His mprotein in march was 13 and is now 44, even after a cycle of velcade. They have now put him on cycloblastin(?) dex and velcade twice a week. He has no idea what day it is. He gets confused very easily and wants to sleep all the time. Does anyone know what protein levels are dangerous or third stage?? The doctor told us its high but not high enough to stop the velcade. Good on you Cath for helping your mum, dad lives with myself, hubby and our two kids and now it's like I have three kids!! Good luck to you all, stay strong and positive.

  9. #19
    Newbie Regular User
    Join Date
    May 2012
    Dad started his latest round of Velcade last Monday, with his second treatment in the round due yesterday. He was too sick to go to the treatment He just couldn't face it. The Velcade has terrible side effects and dad has them all - extreme lethargy, fatigue, weakness, explosive diarroheah...from all I've read it seems a lot of people don't tolerate Velcade at all well.

    Dad's specialist wants to see mum and dad on Monday - I don't know how he thinks dad will get there if he was too weak and ill to go to treatment yesterday...but we will try to get him there.

    Dad said to mum and lastnight that he wishes God would take him Mum gave him a kiss and said "well pray to him and he might, if that's what you want". She's being so strong and trying so hard to say all the right things and support dad, heartbreaking to watch, they've been married 41 years.

  10. #20
    Newbie New User
    Join Date
    May 2012
    Cath72 sorry I am just now back on line. Yes, I am the primary care taker for my husband. He is doing much better this week having finally gotten through the diarrhea and total exhaustion from that. We actually did some yard work together today! We are going in on Monday for an appointment with the doc and I hope he will perscribe something for sleep and the neuropathy in his feet that he is suffering from. I am so hopeful that you have had a better week this week with your dad too. Having a supportive partner is wonderful and I am so glad you have the support from yours. I will be sending healing thoughts your way!


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