Doug has recovered from the flu and is gaining strength every day. He is back to Physical Therapy and the dreaded exercises. We even went out to lunch the other day - something we haven't done for a while. We tried a new lunch place in town and really enjoyed it.
Yesterday we went to Denver for the monthly oncology check. This time we saw the specialist's nurse practioner because the specialist was on a bicycling vacation in Italy. He always comes back refreshed and "pumped up", pardon the pun. The NP is very good; we have seen her before. Since Doug still has the peripheral neuropathy in his feet, she suggested increasing the Gabapentin dose. Currently he takes 600 mg twice a day. He will now be taking 600 mg three times a day. If he can tolerate it, that is. Gabapentin can cause dizziness and mental fog.
While in the clinic, Doug got his infusion of Zometa.
Still on chemo vacation, as long as the cancer numbers are not rising too high, and he continues to have PN.
Praise the Lord for his provision!
Love to all.
Saturday, May 16, 2015
Wednesday, May 6, 2015
Flu
Doug is on day five of having the flu. It started late on Saturday - it seems a lot of illnesses start on the weekend. Luckily, a few months ago, at the height of the flu season, our PCP wrote prescriptions for Tamiflu for both of us. We didn't need it then, so the pharmacy kept those scripts on file. Early Sunday morning, I was able to fill Doug's prescription for Tamiflu and get him started on that. I think that helped a lot. Doug has had fevers, chills, sweats - just feeling crummy and not wanting to eat. Yesterday we were able to get an appointment at our local clinic. Our wonderful nurse practitioner added an antibiotic just to make sure all bases are covered as far as him getting a secondary infection.
Doug's physical therapy has been slow to show results. Now, of course, he is weakened by the flu so he will have to really work to regain strength. But he will.
We had to cancel a trip to Nebraska. We were planning to go see Doug's mom who is 102 years old. She is doing well considering her age.
I'm thankful he got sick before we left. Always better to be home when we are not well.
Doug's physical therapy has been slow to show results. Now, of course, he is weakened by the flu so he will have to really work to regain strength. But he will.
We had to cancel a trip to Nebraska. We were planning to go see Doug's mom who is 102 years old. She is doing well considering her age.
I'm thankful he got sick before we left. Always better to be home when we are not well.
"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
Saturday, April 11, 2015
Need Physical Therapy; still on chemo vacation
Monday we went to Denver for the monthly myeloma specialist appointment. Doug's basic labs are okay. We should get the myeloma panel results in about a week. He decided to keep Doug on the chemo "vacation" for now.
The peripheral neuropathy still bothers Doug's feet, and he hasn't been walking much. Dr. M said to go ahead and increase the Gabapentin from 300mg BID (twice a day) to 600mg BID. Amitriptyline remains at 50 mg.
Dr. M wants Doug to exercise more. He observed Doug getting up on the exam table, and said Doug is not using his leg muscles properly. He wants Doug to go to physical therapy, for strength and balance. I think that is an excellent idea. We have a very good physical therapist right in town. I went to her last year when I tore ligaments in my ankle, and my balance improved a lot.
The fatigue is still present. I was hoping that would lessen since he's been on chemo vacation. Hopefully, the physical therapy will get him to a place where he is able to walk more and have more energy. Our weather is warming up; if we can get out and walk on some of the easy trails I think it would boost Doug's spirits. Sitting around in the house isn't good.
We had good travel both ways. I'm glad Doug still likes to drive and is able to.
We thank God for our many blessings.
The peripheral neuropathy still bothers Doug's feet, and he hasn't been walking much. Dr. M said to go ahead and increase the Gabapentin from 300mg BID (twice a day) to 600mg BID. Amitriptyline remains at 50 mg.
Dr. M wants Doug to exercise more. He observed Doug getting up on the exam table, and said Doug is not using his leg muscles properly. He wants Doug to go to physical therapy, for strength and balance. I think that is an excellent idea. We have a very good physical therapist right in town. I went to her last year when I tore ligaments in my ankle, and my balance improved a lot.
The fatigue is still present. I was hoping that would lessen since he's been on chemo vacation. Hopefully, the physical therapy will get him to a place where he is able to walk more and have more energy. Our weather is warming up; if we can get out and walk on some of the easy trails I think it would boost Doug's spirits. Sitting around in the house isn't good.
We had good travel both ways. I'm glad Doug still likes to drive and is able to.
We thank God for our many blessings.
Thursday, March 12, 2015
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.
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
Friday, March 6, 2015
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.
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.
Wednesday, February 25, 2015
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
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
Thursday, February 12, 2015
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.
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
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