My father was diagnosed in early October with multiple myeloma. He has a solitary bone plasmacytoma in one of his vertebrae that led to compound fractures. He had 3 weeks of radiation for the tumor and started 3-4 months of cybor-D chemo the day after radiation. He has experienced a decline in the back pain, but it is still excruciating if he accidentally bumps into something. He is confined to bed most of the day, needs help to do anything, has to use a walker to move, lost about 30 pounds in a few weeks and is generally too weak to have more than a few minutes of conversation.
I know that different treatments may or may not work to bring the myeloma under control, but I am wondering how much he can recover if they do work. Will he ever be able to walk again without a walker? Run? Ski? Travel, including on an airplane? The doctors mentioned that he could have back surgery to stabilize his spine, but I don't think that could happen until after chemo.
He looks so sick and weak now that it is hard to imagine him ever being active again. Has anyone recovered from a steep decline like this?
Thank you for all your help.
Forums
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melizabe - Name: Melizabe
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 64
Re: How much can you recover?
I had suffered some pretty serious back pain from a collapsed T-11 vertebrae and other fractures in my ribs, pretty much immobilizing me for weeks before diagnosis. After chemo treatments and a monthly treatment of Zometa, it seems my bones are healing and not nearly as painful. Even the pain in my spine had dramatically lessened, and really only complains when I am too stiffly seated or standing for long periods.
I am not in a place to ski or job right now yet I don't need a walker anymore and can get around fairly comfortably. I probably will require to have my vertebrae addressed, but right now I am far, far better than what I had been, gaining weight, and don't need constant pain management.
I am not in a place to ski or job right now yet I don't need a walker anymore and can get around fairly comfortably. I probably will require to have my vertebrae addressed, but right now I am far, far better than what I had been, gaining weight, and don't need constant pain management.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: How much can you recover?
StandingTall, thank you for your reply! I just read your story on one of your other posts and it is so wonderful for me to hear that my Dad might be walking around again one day. Good luck with your treatment!
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melizabe - Name: Melizabe
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 64
Re: How much can you recover?
Once the disease has been brought under control, if it is appropriate consider a kyphoplasty or vertoplasty to help address any collapsed vertebrae. It helped me tremendously. I was basically walking with a cane, or a walker and loaded up on fentanyl patches because of my compression fractures. Had a kyphoplasty on L3 and L4, lost the cane, lost the walker, lost the drugs, and was skiing the next winter. I leave the black diamonds alone now ( I do miss them), but pretty much have no real problems that limit me too much, at least from the compression fractures. I had some trouble finding a neurosurgeon to perform the procedure, but successfully found one willing to do it. He admitted after the success of the procedure that he was surprised it worked as well as it did. Happy it worked, but was surprised at its success.
Best of luck,
Eric
Best of luck,
Eric
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EricT
Re: How much can you recover?
Blessing or curse, my husband was diagnosed with stage 4 myeloma only because he fractured 3 vertebrae. He was in Incredible pain, but the myeloma showed up as bone problems in a scan and that saved his life. He was started on a VDR regimen immediately. He was able to have kyphoplasy. That process reduced the pain, but he was left with a bend in his spine that causes discomfort and sometimes pain when he sits on a hard-backed chair. We carry a pillow with us all the time to ease that.
Right now, the back problem is not debilitating, however, Velcade induced neuropathy in his feet is.
Right now, the back problem is not debilitating, however, Velcade induced neuropathy in his feet is.
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Bsiro
Re: How much can you recover?
In 2006 I had tremendous back pain and after examination it was discovered that there were two compressed vertebrae. I got a recommendation for a neurosurgeon who performed kyphoplasty and it was a miracle. I went from not being able to move without excruciating pain to practically dancing out of the hospital. I've never been so grateful and revieved in my life. It was almost two years later that I was diagnosed with multiple myeloma.
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Texasbarbara
Re: How much can you recover?
Dear melizabe,
We have had many patients with incapacitating back pain have significant improvement in their level of functioning over time. Several others have mentioned kyphoplasty as a way of improving pain and function. This would be worth discussing with your father's oncologist. In some instances, surgery to stabilize the spine may be needed. Consultation with a spine specialist would be of value given the trouble your father has had. Given the severity of your father's pain and debilitation, kyphoplasty or surgery should be at least considered sooner rather than later.
Your father is on an active therapy for multiple myeloma and it sounds like the pain has gotten better, which is encouraging. It will take time, but I am optimistic your father will continue to improve. Please explore these other avenues, though, as they may expedite recovery.
Good luck and hang in there!
Pete V.
We have had many patients with incapacitating back pain have significant improvement in their level of functioning over time. Several others have mentioned kyphoplasty as a way of improving pain and function. This would be worth discussing with your father's oncologist. In some instances, surgery to stabilize the spine may be needed. Consultation with a spine specialist would be of value given the trouble your father has had. Given the severity of your father's pain and debilitation, kyphoplasty or surgery should be at least considered sooner rather than later.
Your father is on an active therapy for multiple myeloma and it sounds like the pain has gotten better, which is encouraging. It will take time, but I am optimistic your father will continue to improve. Please explore these other avenues, though, as they may expedite recovery.
Good luck and hang in there!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: How much can you recover?
About 5 years ago, after several weeks of severe back pain I woke up one day and couldn't walk. The doctor found a plamascytoma on my 7th vertebra that was compressing on my spinal cord. The next day I had an operation to remove the tumor, and I had 15 doses of radiation directed at the site of the tumor. I then had two rounds of chemo and a stem cell transplant. I was in a wheel chair and then a walker but after 10 months I was able to walk unassisted. I still have some mobility issues but I can do most of what I did before. Good luck. Jon
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Jon49
Re: How much can you recover?
Thank you everyone! It is so helpful to hear that recovery is possible.
Just to give you an update, since completing his radiation, my Dad's pain has steadily decreased. He is even off pain medication now! I think the effects of the radiation just took a little longer to kick in than we had anticipated. He is more mobile and using his walker less. He spends a lot more time out of bed and can do a lot more than a few weeks ago. He has a lot more energy and we all feel like the future is much brighter than it was a few weeks ago.
We still don't think a kyphoplasty would happen until after the chemo, based on consultation with the oncologist and the spine surgeon, but we will be checking with the doctors to see if we could do it before then given his significant improvement.
Thank you again!
Just to give you an update, since completing his radiation, my Dad's pain has steadily decreased. He is even off pain medication now! I think the effects of the radiation just took a little longer to kick in than we had anticipated. He is more mobile and using his walker less. He spends a lot more time out of bed and can do a lot more than a few weeks ago. He has a lot more energy and we all feel like the future is much brighter than it was a few weeks ago.
We still don't think a kyphoplasty would happen until after the chemo, based on consultation with the oncologist and the spine surgeon, but we will be checking with the doctors to see if we could do it before then given his significant improvement.
Thank you again!
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melizabe - Name: Melizabe
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 64
Re: How much can you recover?
Another update. My Dad is able to drive again and ride a stationary bike, walk around the block, and do so much now! He is scheduled for a stem cell transplant next month. The spine surgeon said that it would be better to wait until after the stem cell transplant to consider surgery as the bones may start to heal themselves a bit.
I have to say that the chemo therapy is rough, but it is about as close to a miracle as I have ever experienced. I know that without it I would no longer have a Dad. I can't thank the doctors, nurses, researchers and patients enough for all the work they have done to treat this disease.
Thank you all!!
I have to say that the chemo therapy is rough, but it is about as close to a miracle as I have ever experienced. I know that without it I would no longer have a Dad. I can't thank the doctors, nurses, researchers and patients enough for all the work they have done to treat this disease.
Thank you all!!
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melizabe - Name: Melizabe
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 64
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