Sleeping better!

Good news and not so good news.

The really good news is that Doug is sleeping much better. The combination of gabapentin and amitriptyline is working for the neuropathy. We have also added vitamins B6 and B12, on the theory of 'it can't hurt'. His toes and bottoms of feet are still numb, but as long as he can sleep the numbness is tolerable. And he walks like a duck but who cares?
We saw the foot and ankle specialist today; he sees PN in some of his patients. He tested Doug's feet and toes with a slightly stiff nylon needle-like thingy. Doug couldn't feel it. He cautioned Doug not to go barefoot because he could step on something and not even know it. He said he sometimes sees improvement in PN after a whole year.

The results of the latest myeloma panel blood test came today. Comparing it to the last two months, we see a slow but steady rise in the cancer numbers (Lambda light chains). Of course this is not good. But the numbers are not at the alarming stage yet, and hopefully won't be for quite a while. It would be great if the oncologist would keep chemo on hold for the next few months. At least there is a plan on what drug to use next.

So we are doing just fine for now. It's important to enjoy the present and not worry too much about the future.

Love to all.

“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.”    

Matt 6:34  The Message

Chemo still on hold; PN still a problem

Last week our oncologist had phoned in a new prescription for the neuropathy since Lyrica didn't work. He wanted Doug to try Remeron (generic mirtazapine) 7.5 mg. Well that didn't work either. We are learning that sleep deprivation causes a host of problems! And Doug has developed short term memory loss on top of everything else.

Yesterday we drove to Denver for the monthly oncology appointment. Dr M, our myeloma specialist, was dismayed to hear the Remeron had not worked. He said to discontinue it. He said PN can take months to resolve. He said there are many remedies but everyone reacts differently - "different strokes for different folks". Now he wants Doug to start amytriptyline at 50 mg (at 25 mg it didn't work), and if necessary go to 75 mg, then up to a maximum of 100 mg. In addition, gabapentin 300 mg twice a day to start. That dose can be raised too.

The specialist gave us this list of OTC things to also try, in this order. He says try one, then add the next if necessary.
1. Vitamin B6 100 - 150 mg
2. Vitamin B12
3. alpha lipoid acid
4. glutamine
 Capsaicin cream (short acting but can help some)

He said acupuncture helps some people.
Cymbalta would be the next prescription if amytriptyline/gabapentin doesn't work.

I told Dr. M about Doug's short term memory loss, and he said that is probably due to Doug taking too much lorazepam. Doug says he will back off of that.

So we spent quite a bit of time talking about neuropathy before we even got around to discussing the myeloma! Dr. M wants to hold off on chemo if possible until Doug's neuropathy is under control and he is able to sleep better. He will watch the blood tests closely for myeloma numbers. When he does restart Doug on treatment, the drug will not be Velcade! He said he wants to do carfilzomib (Kyprolis) next.
Doug will keep getting the Zometa infusion every month, to strengthen his bones.

We felt this was a good visit. We are thankful to have such a good myeloma specialist who spends as much time with us as needed to make sure we understand.

I have a new iPhone app called Supernote; I tried it to record our conversation with Dr. M and it worked great! I always take notes but this will be a good way to make sure we get all the information down.

Love to all.

Lyrica not working for PN

Doug is tapering off the Lyrica - it has not helped with the neuropathy in his feet. We gave it a try, but we think it would have had some effect by now, so we consulted with the oncologist and he said to be sure to taper off it, not stop suddenly. Lyrica is not on the formulary for Doug's Plan D pharmacy, so our co-pay was several hundred dollars. Oh well, it was worth a try.

Doug is still having trouble sleeping at night. He says his feet ache so much, not just numbness. During the day he is able to tolerate the aching. He has been taking Vicodin at night the last two weeks to relieve the pain. At first he said it was helping, now not so much. Lorezapam used to keep him sleeping; now he is up to 2 mg and often wakes and takes more, but nothing really works well. The medical marijuana hasn't been a success either. He does nap a lot during the day, so he is getting sleep. I'm thankful for that.
I have noticed the last few days that Doug is starting to shuffle his feet when walking. He wasn't aware of that. Since I pointed that out to him, he is making an effort to pick up his feet.

We are having neighbors over for lunch tomorrow. We have wonderful friends and neighbors who are helpful. They show up to shovel our driveway when it snows, among other things. So we are looking forward to enjoying their company for lunch.

As this cancer fight wages slowly on, it would be easy to become discouraged. But when we stop to count our blessings, we realize how very much we are blessed. Our church is awesome, a place where people are the hands and feet of Jesus. Church is not a building, it is US.
Our faith upholds us; we know this world is NOT all there is. Because we accept Jesus as our Savior, we are assured of a place in heaven. In the midst of trouble, we can have His perfect Peace.

Love to all.

"Life is a gift, albeit unassembled. It comes in pieces, and sometimes it falls to pieces. Part A doesn't always fit with part B. The struggle is too great for the strength. Inevitably, something seems to be missing. The pieces of life don't fit. When they don't, take your problem to Jesus."    Max Lucado

Feeling Better

Doug is feeling better the last few days. He has his appetite back and is gaining some weight. He still tires easily but has more energy than the last few weeks. We have gone out to lunch and to church together, and have visited with friends, which is reason to celebrate. He still has the PN, especially in the right foot. He is now taking Lyrica to combat the PN. Too soon to know how effective it will be. At least the PN is milder than some have it. No shooting pains, but numbness in feet. Sleep is still a problem, but he is napping less during the day, so we hope for better sleep soon.

The myeloma panel that was done on January 30 shows rising light chains, probably due to being off velcade, but the light chains are still in the normal range, so that's great.

Today we went to Salida for Doug's eye exam, to get things in order so he can have cataract surgery. The ophthalmologist says Doug's glaucoma is worse, so he wants Doug to see a glaucoma specialist before the surgery. The plan is to insert some kind of shunt at the same time as the cataract surgery. Both the ophthalmologist and the glaucoma specialist travel from Pueblo once a month. We are very glad we don't have to travel to Denver for that!

We seem to spend a lot of time going to doctor appointments. So do lots of people as we all age and many have various ailments and diseases. We are thankful for good medical care and the ability to get where we need to go.

Love to all.

"May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ." 2 Thessalonians 3:5

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