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

Back Pain

For the past couple of weeks Doug has had back pain. He didn't tell me at first, so I'm not sure when it started. The oncology specialist ordered a PET/CT scan which was done December 16. It didn't show anything new. The pain is in his lower back/hips, more so on the right side. At times it radiates down his right leg. Since the scan didn't show anything, all concerned are assuming it is not the cancer acting up. Most days he has been feeling well enough to go out and do things. At night, when lying down it gets pretty bad. He is really getting sleep deprived. We have an appointment with an orthopedist January 5.
The oncologist wrote Doug a prescription for Vicodin, but Doug says it doesn't do much for the pain at its worst. Yesterday I finally went to a recreational marijuana shop (legal in Colorado) and got some drops for him to try, hoping it would help him sleep. It was interesting in the pot shop. The gal was very kind and seemed to know her business.
The MJ didn't work very well, but  we are going to pursue getting the doc to sign for a medical card. Medical marijuana can be sold at higher doses. We figure it can't hurt.
This morning at 7:30 Doug took a morphine pill, 30 mg, which we had left over from a previous pain episode. He hates morphine because it makes him feel so drugged. He went back to bed and I thought he would be out for a long time. Two hours later he woke up and wanted breakfast! Now he's sitting in recliner watching TV.
This pain has been up and down, on and off. There were two days he had no pain at all. It is really so unpredictable. Yesterday afternoon he had a good visit with a neighbor and walked to the corner mailbox.
I'm praying for guidance and just taking it one step at a time.

I will go to a neighbor's house for Christmas dinner today. I think Doug will stay home. Tomorrow we are supposed to go to Denver for the monthly oncology specialist appointment and to get chemo. The weather forecast isn't the best so we will re-evaluate in the morning.

Our town has heavy hearts. A baby died a week ago after being treated 3 days for pneumonia. No one has said it was the flu but I rather think it was. This morning our church sent an email asking for urgent prayers for another baby who is sick with a high temp. We can't understand why these horrible things happen.  All who know these families are just heartsick. We cry out to God but we still put our faith in Him.

Even though we don't feel much like celebrating, we rejoice in the birth of baby Jesus.

A Cold but No Fever

Doug hasn't been able to shake his cold. So a couple days ago he went to our local clinic to see our nurse practitioner. He didn't have a fever but she wrote him a prescription for antibiotics with directions not to fill the script unless he gets worse. His immunoglobulins are low so we want to keep on top of any possible infection.
The NP told us that if either of us get flu symptoms to call the clinic to get Tamaflu. If taken within three days of onset of symptoms it will stop the flu.
Doug got his chemo at the new lowered dose two days ago and this time didn't get the horrible diarrhea, so we are very glad about that.

We feel very blessed this Christmas season. Jesus is the reason for the season!

A week off chemo

The Denver specialist gave Doug a week off chemo! Yippee! And when it restarts the Velcade dose will be lowered again. Originally the Velcade was given at a dose of 1.5mg/m2. On Nov 24 it was lowered to 1.3mg/m2. Now it will be 1 mg/m2. So it will be 2/3 of the original dose. Hopefully this will greatly reduce the side effects.

We had a wonderful Thanksgiving with family. All five of our grandchildren were home! Three of them are in college, one in the military, and one working, so getting them all together is increasingly difficult. We really enjoyed the time together, but Doug came down with a cold two days later. He has been sleeping more. His appetite is good.

Love to all.

Velcade Dose Reduction

Yesterday we went to Denver for the monthly myeloma specialist visit, Zometa infusion, and CyBorD treatment. Last week we saw the general oncologist in Salida, and she ordered a myeloma panel blood test. It showed another drop in light chains (cancer marker)!
The Denver specialist decided, since Doug is showing an excellent response to the Velcade, and he has such a problem with diarrhea -- that it would be good to lower the dosage of Velcade by 15%. He said he has never had a patient with such a severe diarrhea side effect from this drug. This specialist is always concerned with his patients' quality of life and doesn't want Doug to be confined to the house several days a week. Doug will be followed closely of course, to make sure the lower dose is still effective.
We did get a valuable aid against diarrhea from the chemo nurses in Salida - BanaTrol, formulated to treat chemo related diarrhea. It is a powder; Doug puts it in applesauce or oatmeal. The nurse said it is okay to take Immodium also.  So if anyone has intractable diarrhea from chemo, check it out. We got samples to see if it would work and then ordered a case from Amazon. No prescription needed. Is there anything you can't get from Amazon?

Once the full six cycles (six months ) of CyBorD been completed, Doug will have some tests, such as a PET/CT scan and others, done to see if in fact he is back in remission. If yes, then he can go on a maintenance dose.
Doug is having some slight neuropathy in his fingers now but thankfully it is not affecting his ability to do things such as fasten buttons.

Doug's blood counts are fine, with the exception of a high glucose - 203. That is way too high. The dexamethasone could be partially responsible, but lack of exercise and too many carbs are probably a factor too. He will have an A1C blood test done by our local nurse practitioner and go from there.

We had an early appointment in Denver, so left home at 6:00 a.m. On the way we saw the most gorgeous sunrise ever! First a hint of yellow light behind mountains, then orange reflected on clouds, then red and gold that made the clouds glow brightly. Then a softer pink and light blue. It changed every minute. What a beautiful gift from God's creation. Have you ever noticed there can be no beautiful sunsets and sunrises without clouds? Isn't that like life - without difficult times, we can't really appreciate beauty and goodness.

Love to all.