[kerrirunnergirl]

Choosing not to do maintenance

by kerrirunnergirl on Sat Sep 26, 2015 2:38 pm

My 50 year old husband was diagnosed with multiple myeloma in April 2015. He had multiple bone lesions, light chain elevation, and 20 percent myeloma in the bone marrow.

He had 6 rounds of RVD (Revlimid, Velcade, dexamethasone). They were unable to obtain cytogenetics due to inadequate specimen.

He had an appointment with the oncologist. All labs were normal (SPEP, immunoglobulins,
electrolytes, CBC, etc.). Bone marrow showed no signs of myeloma cells.

We were considering Revlimid maintenance vs Velcade and decided against Velcade due to
peripheral neuropathy issues.

But after the appointment with doctor, we decided on the spot to hold off on maintenance. It was spontaneous and in retrospect we never really considered his opinion nor did he offer one.

Just wondering if others have elected to have a wait-and-see approach regarding treatment.

We are not opposed to any treatment and realize that they are all on the table, including stem cell transplantation.

We also realize that while the bone marrow was negative, a sample one inch to the
right or left could of yielded different results.

I guess we just thought let's wait a month and see what his body does and wondering if others have taken a similar path.

Thanks, Kerri

[LisaE]

Re: Choosing not to do maintenance

by LisaE on Sat Sep 26, 2015 4:38 pm

We opted not to do maintenance.

My husband was unable to have a stem cell transplant because of the Cytoxan (cyclophosphamide) damage to his lungs. He was offered Revlimid maintenance, but his M-spike was at trace levels and we decided to get him off all the drugs, start 8 gm of curcumin, and let him recover. He was in terrible shape from a year of inactivity due to severe bone damage and the lung damage. That was October 2014. His last CyBorD (cyclophosphamide, Velcade, dexamethasone) treatment was August 22, 2014.

His M-spike went to zero in January and remains there. The neuropathy is down to some numb­ness and an occasional zing in his feet. He's carefully and systematically worked and exercise program to build back his strength and his cardio/endurance. He's now on the recumbent bike an hour 3x per week, gentle yoga 2x per week. We just got back from holidays in Croatia where he was walking 4-5 miles a day.

At some point his numbers may change, and we'll deal with treatment then. But for my husband at least, the chance to get himself into shape and return to living a more normal life without the fatigue and other effects of the drugs has been priceless.