Hello everyone.
My awesome mom was diagnosed with multiple myeloma on May 13th 2016 at the age of 61. She has gone from working a full time job and being fully functional, to now not being able to walk. She is currently two weeks into her first round of chemo of dex, Revlimid, and Kyprolis (carfilzomib). She has multiple vertebral fractures and several rib fractures and had an M-spike of 3.5 g/dL (35 g/l) at diagnosis. She is being treated at MD Anderson in Houston.
She is very discouraged. She has been hospitalized 4 times in the last month for elevated calcium levels, poor kidney function, and anemia.
Can she expect to regain functionality and quality of life given the state she was in at diagnosis?
Leslie
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LesinZ - Name: Leslie
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: May 2016
- Age at diagnosis: 61
Re: Lots of problems at diagnosis - is recovery possible?
Leslie,
YES! There are plenty on the forum who were in pretty bad shape at diagnosis who regained an excellent quality of life. Your Mom is just at the beginning of treatment, and she is being seen at a center of excellence. I expect that she will have good results.
How is her pain? Make sure her docs know if she is having considerable pain. They have many tools to use for treatment and pain.
Hang in there, things will get better!
Ellen Harris
YES! There are plenty on the forum who were in pretty bad shape at diagnosis who regained an excellent quality of life. Your Mom is just at the beginning of treatment, and she is being seen at a center of excellence. I expect that she will have good results.
How is her pain? Make sure her docs know if she is having considerable pain. They have many tools to use for treatment and pain.
Hang in there, things will get better!
Ellen Harris
Re: Lots of problems at diagnosis - is recovery possible?
Hi Ellen,
Thanks for your reply! Her pain has been very bad. Last Wednesday she had injections done in her back and over the course of the weekend lost the ability to walk. They say that the injections put pressure on her nerves and spinal cord. They will start radiation today in the hopes of restoring the functioning in her legs. They think they can, but cannot promise it. I pray they can. Take care, Ellen!
Leslie
Thanks for your reply! Her pain has been very bad. Last Wednesday she had injections done in her back and over the course of the weekend lost the ability to walk. They say that the injections put pressure on her nerves and spinal cord. They will start radiation today in the hopes of restoring the functioning in her legs. They think they can, but cannot promise it. I pray they can. Take care, Ellen!
Leslie
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LesinZ - Name: Leslie
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: May 2016
- Age at diagnosis: 61
Re: Lots of problems at diagnosis - is recovery possible?
Reading about what your mom is going through reminded me of Tom Brokaw and his Dateline NBC broadcast about his multiple myeloma diagnosis. He was diagnosed back in 2013 and wrote a book about his experience, "A Lucky Life Interrupted". He too had spinal fractures and I believe was taking Kyprolis, Revlimid, and dexamethasone as an induction treatment.
It's now 3 years later and he is back to doing NBC specials. His fractures have healed and his quality of life has returned. I believe your mom will likely have a similar experience. Most people react very positively to initial treatment.
It's now 3 years later and he is back to doing NBC specials. His fractures have healed and his quality of life has returned. I believe your mom will likely have a similar experience. Most people react very positively to initial treatment.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Lots of problems at diagnosis - is recovery possible?
I too could barely walk at diagnosis. My light chains were through the roof, my M-spike was high. Figured I was as good as dead. It took months, but I got much better.
She's at the lowest of lows at this point. It can only get better! Pain management is key at this point until they can get those bones to heal up.
She's at the lowest of lows at this point. It can only get better! Pain management is key at this point until they can get those bones to heal up.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Lots of problems at diagnosis - is recovery possible?
Thank y'all so much for the encouragement. It has been really hard for her to see the light through the pain, but they have switched her to oxycodone in hopes that they will he alerted to fevers as opposed to the hydrocodone. It seems to be helping, though she has spasms that feel like knives when she is in a sitting position.
I will have to buy Tom Brokaw's book!
Thanks to you all!
Leslie
I will have to buy Tom Brokaw's book!
Thanks to you all!
Leslie
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LesinZ - Name: Leslie
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: May 2016
- Age at diagnosis: 61
Re: Lots of problems at diagnosis - is recovery possible?
Leslie,
The answer is yes!
My wife and I started the journey 12 months ago. The first two months were the toughest. She is now two months after an autologous stem cell transplant and, back at full strength with no measurable level of myeloma.
Best of luck!
John
The answer is yes!
My wife and I started the journey 12 months ago. The first two months were the toughest. She is now two months after an autologous stem cell transplant and, back at full strength with no measurable level of myeloma.
Best of luck!
John
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
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