Off All Chemo for One Month

Yesterday we went to Denver to see the myeloma specialist.
Doug has lost 17 pounds over two months, and his blood pressure was a bit low, probably due to dehydration.
Because of the side effects - fatigue, weight loss, peripheral neuropathy, and sleep problems, and generally feeling poorly, the specialist decided to temporarily halt all three chemo drugs for a month. He said "The CyBorD (drug combo) is working great, but it is  kicking your butt."

We have an appointment March 5; then the specialist will reevaluate Doug. He wants to keep Doug on treatment throughout 2015. The Lambda light chains are down, but he feels it is too soon to stop treatment. Once the PN has resolved and treatment can continue, his first choice would be to re-start Doug on the same drugs, at the same dose, but to change the frequency from every week to every other week. He hopes that would be well tolerated. The second choice would be to change drugs, possibly to pomalidomide.

Elusive sleep is a big problem. The specialist wants Doug to try amitriptyline at night. It was originally an anti-depressant but is used off label to treat some cases of nerve pain. During the day, Doug is able to tolerate the PN in his feet and notices primarily the numbness. His brain is distracted by daytime activities. At night the brain focuses on the PN, to the point where Doug says the blankets feel too heavy and his feet ache. Doug took his first amitriptyline last night and said it did not help at all. I think it might take a while, and the specialist said the dose might need to be increased. The doc said it is okay for Doug to take lorazepam (Ativan) for sleep but not the same night as amitriptyline.

We so appreciate Dr. M, the Denver myeloma specialist. He is caring, uses a lot of humor, and he is brilliant. He always has a plan and is encouraging. He goes to a lot of medical conferences to keep up with the latest findings. He says myeloma physicians are now dealing with more side effects as patients are living longer on newer drugs. He is very aware of the quality of life aspect.

The drive to and from Denver went well. I drove more distance than usual. My problem with highway driving is fighting to stay awake and alert on less busy stretches of road. I took a caffeine pill this time. I don't like coffee, and soda drinks cause extra potty stops (and there are not that many places to stop!), so the caffeine pill really helped me. I was able to drive two hours and not get sleepy. That is a huge improvement. So I drove the open highway, and Doug drove in the high traffic areas of Denver.

We are both looking forward to a month off the chemo drugs. Hopefully Doug will see a gradual improvement. Today we are both tired and resting up.

Love to all.