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.

Fatigue finally lessening; PN still present

Doug has been off Velcade for 22 days and he still has the peripheral neuropathy in his feet. The whole month of January the fatigue has been steadily increasing. He has been sleeping when he can, and has done very little. Occasionally he musters up the energy to walk around the block.  He's glad we have Netflix so he can watch movies. On the days when he has felt up to it, he made me two shelves in his workshop, working a little at a time.

Yesterday was a turning point - the first day he felt a bit less fatigue! We went to Walmart; he went in to pick out a few things then returned to the car to wait while I did the shopping. That doesn't sound like much but it is progress. And he stayed awake most of the day. Today has been even better, and his appetite is picking up. 

The PN in Doug's feet remains. Numb toes and aching pain all over his feet. During the day he can distract himself but at night it really bothers him. He says the blanket is too heavy on his feet. The nurse practitioner at the Denver office started Doug on Lyrica for the PN on January 26, three days ago. It is a gradually escalating dose starting at 50 mg daily, up to a maximum dose of 100 mg TID (three times a day). Too early to say if it is working. 

The medical marijuana has been a disappointment so far. Since there has been no scientific research done, we had to experiment to find a dose that works without making him dizzy. Doug says he thinks the edible helps him get to sleep but only for a couple hours. Does not make him feel any better. His doc does not want him smoking it. I don't want the smell in the house either. Medical marijuana is available in many forms - oils, edibles, salves, etc. Doug tried the salve on his feet but says it did not help. Not sure if he used enough. 

The Colorado Board of Health has approved more than $8 million in grants to fund eight studies on medical marijuana. The research will be done at the University of Colorado Anschutz Medical campus and will examine the use of medical marijuana in treating pediatric epilepsy, post-traumatic stress disorder, Parkinson's disease and other conditions. I'm really happy to see some research being done. Some day in the future, maybe not in our lifetime, medical marijuana will evolve into valuable treatments. I'm not in favor of recreational marijuana however. Some of the edibles look just like candy, potentially dangerous to children. 

Tomorrow we go to Denver to see the myeloma specialist. We are hoping he will say Doug is in remission! We trust in the Lord always. 

"One of the main ways we move from abstract knowledge about God to a personal encounter with him as a living reality is through the furnace of affliction."     Tim Keller

Peripheral Neuropathy; Stop Velcade

Doug's  back pain comes and goes and is not the main concern. It must be arthritis.  It seems extra-strength tylenol helps.

The last few weeks have been difficult. Doug has increasing fatigue and is sleeping poorly. He is eating less than usual due to the GI unrest and has lost a few pounds.

Over the last two weeks, he has developed peripheral neuropathy in his feet. At first his toes just felt numb, then it gradually progressed to pain. Sometimes pain in his legs. So I emailed the nurse navigator in Denver. She checked with the oncologist and he said to stop velcade for now, until we see him January 30. Doug is to continue taking cytoxan and dexamethasone.

Doug is very tired of all this and is worn down. I am getting tired too. We both are very glad to stop the velcade. Doug is at the end of cycle 5. We think the end is in sight; sure hope so! His blood counts are down quite a bit but still within the limits for CyBorD. We know many people have worse side effects.

So far we have escaped the flu. We are so thankful for that, as our town has been hit hard.

Love to all.

The faithful love of the Lord never ends! His mercies never cease. Great is His faithfulness; His mercies begin afresh each morning. 
Lamentations 3:22-23