Hello, I have a question. My father was just recently diagnosed with multiple myeloma on April of this year. The doctor started my dad with 3 shots of Velcade. Then referred him to San Antonio to discuss a stem cell transplant. Only, when we got there, that doctor said he wasn't sure why we were there because my the referring doctor already started him with a treatment plan and he is also a hematology doctor as well. The only other information we learned that day was my father was supposed to be taking the steroid with the Velcade.
So when I called our doctor's office and ask them about the confused visit to San Antonio, they immediately fired my father as a patient, stating we didn't have trust in him. We stayed scratching our heads in disbelief.
So now we are seeing a new doctor and my fathers' health is rapidly decreasing. He now can't walk or hold himself up. He has to be spoon feed. And we are not sure if the cause was that the Velcade was given alone. Or what should be causing him to lose the ability to walk on his own.
We just got referred to see a neuro doc hoping to get answers there. I would just like an explanation of all this.
DLJPAL
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Re: Father recently diagnosed, but health declining rapidly
Dear DLJPAL,
I am sorry to hear about your father's current situation. I think he needs to be seen right away, if he has not already, and potentially admitted to the hospital for further work-up based on your description of his current state.
Is the weakness restricted to the legs? Does he have numbness / tingling / burning pain in his legs?
If the problem is primarily leg weakness, especially if associated with loss of sensation, I would worry about either Velcade-induced neuropathy or nerve root / spinal cord compression from myeloma in the spine.
If the weakness is diffuse and not associated with numbness/ tingling, etc, it could be due to any number of causes (worsening anemia, high calcium level, worsening kidney function, infection, progression of myeloma, severe side effects of Velcade).
Regardless, he needs evaluation ASAP.
Hang in there and let us know how things go!
Pete V.
I am sorry to hear about your father's current situation. I think he needs to be seen right away, if he has not already, and potentially admitted to the hospital for further work-up based on your description of his current state.
Is the weakness restricted to the legs? Does he have numbness / tingling / burning pain in his legs?
If the problem is primarily leg weakness, especially if associated with loss of sensation, I would worry about either Velcade-induced neuropathy or nerve root / spinal cord compression from myeloma in the spine.
If the weakness is diffuse and not associated with numbness/ tingling, etc, it could be due to any number of causes (worsening anemia, high calcium level, worsening kidney function, infection, progression of myeloma, severe side effects of Velcade).
Regardless, he needs evaluation ASAP.
Hang in there and let us know how things go!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Father recently diagnosed, but health declining rapidly
I hope this personal story may help you. We suffered something similar.
Although we were diagnosed with multiple myeloma, it was not active, so we did not do any treatment.
However, the multiple myeloma became active, but unknowingly to us. It started with back pain and the inability to make a bowel movement. We went to one ER and they just gave us some muscle relaxants and sent us home. But this did not help and we got worse. We had difficulty walking.
We went to another ER and they admitted us right away, doing the whole work up of blood and x-rays. We found out the kidney's were failing due to hypercalcimia due to the multiple myeloma. We were admitted right away.
We started dialysis to clean the blood out, and also the CyBorD regimen. And did dialysis for about a week. We couldn't get out of bed for nearly 2 weeks because we were under so much pain and spontaneous muscle spasms.
6 months later on CyBorD, we can now walk and (mostly) resume our daily activities, albeit we are still taking CyBorD.
Although we were diagnosed with multiple myeloma, it was not active, so we did not do any treatment.
However, the multiple myeloma became active, but unknowingly to us. It started with back pain and the inability to make a bowel movement. We went to one ER and they just gave us some muscle relaxants and sent us home. But this did not help and we got worse. We had difficulty walking.
We went to another ER and they admitted us right away, doing the whole work up of blood and x-rays. We found out the kidney's were failing due to hypercalcimia due to the multiple myeloma. We were admitted right away.
We started dialysis to clean the blood out, and also the CyBorD regimen. And did dialysis for about a week. We couldn't get out of bed for nearly 2 weeks because we were under so much pain and spontaneous muscle spasms.
6 months later on CyBorD, we can now walk and (mostly) resume our daily activities, albeit we are still taking CyBorD.
Re: Father recently diagnosed, but health declining rapidly
The best thing I have learned is to find a myeloma expert. Please get a second opinion and realize your Dad is in the driver seat. It's his body and his life and he gets to determine what is good for him. Best of luck,
Kim
Kim
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
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