Anyone gone through a Stem Cell Transplant?

[mlp021]

I've got multiple myeloma and am tentatively scheduled for a stem cell transplant in mid-June.

 

Wondering how your post cell transplant went? How long until you like your old self?

[EmperorPenguin]

I have never had it, but one of my good friends have.  He was basically a lab rat and took one of the first stem-cell transplants back in 2008, and so far he has been the poster child of success.  I lost touch with him, having not spoken with him in about three years, and quite honestly I am afraid of calling him to find out if he has died, so for now I will say that he just drifted away.  Through years of talking with him, these are a few things I remember in our conversation.

 

First of all, multiple myeloma is cancer of the bone marrow.  Your bones hollow out and the weight of your muscles and skin collapse your skeletal system.  In my buddy's case, his rib cage collapsed and he lost about four inches of height.  It is a disease that kills you very slowly.

 

Secondly, the stem-cell transplant is a one-million-dollar procedure.  I hope you have the best insurance.  I remember that the average life span of the procedure is about five years, and my buddy survived at least 13 years.  He had the procedure done at Stanford, so he had the best possible care.  At the time he took it (2008), it was a new procedure.  Maybe the technology of treatment has vastly improved since.

 

The third point is that after your procedure, you will next have to find the right drug combination to maintain and minimize myelomic activity.  You are screened two ways.  First is a monthly blood test to check for a measure of "kappa-free light chains," and that the lower the number, the better.  For a normal, healthy human, the kappa numbers come in at nominal units, maybe 1-3; for those with multiple myeloma, that number can rapidly rise, anywhere from 20 to a couple thousand.  A second test is a biopsy of your tail bone: they will drill out a small chunk of your tailbone and examine it for proof of myeloma.  Once the numbers start trending up, it is time to consider alternative medicine treatments.  I remember Revlimid as a popular line of defense against myeloma, and with it the patient can have fantastic kappa numbers, but invariably the myeloma will find its way around the drug and the kappa numbers will increase, thus rendering the medicine ineffective and time to consider a new course of treatment.  Some may work brilliantly, but the side effects may be harsh.  After Revlimid stopped working for my buddy, the doctors prescribed Pomalyst.  The kappa numbers immediately dropped down to normal levels, but he was constantly having very high fever (102-103) and had to find another drug.

 

This is basically all I know from my buddy, and I have not spoken to him in about three years, so I really do hope he is doing well.  I just don't have the courage to pick up the phone and call him and ask how he is doing.