Report from the latest myeloma panel came back - Lambda light chains are down from 269 last month to 38 now. Wonderful! This is still a bit high, but means the current PCP treatment is effective. Praise the Lord!
On the glucose front, the A1C lab report is 7.8 Too high. Normal range is 4.5 to 6.0
We are still waiting to get the glucometer. The order from the doc was coded incorrectly. Unfortunately, codes are everything in the medical world, where orders are concerned. So we wait.
"To one who has faith, no explanation is necessary.
To one without faith, no explanation is possible. " Thomas Aquinas
Thursday, November 19, 2015
Friday, November 13, 2015
High Glucose
Doug's right eye is healing from the surgery, just a slight black eye now. We found out the device is an "Ahmed valve". And we found a video of the surgery on Youtube! It was interesting to watch and we think it explains why Doug had a lot of eye pain afterward. How could it not hurt? Doug has had two follow up visits and both docs said it looks good but still has a lot of healing to go. However neither was the surgeon. Doug goes again to our local optometrist next week for a check and finally we see the surgeon ophthalmologist December 10 when he travels to Salida. Meanwhile the eye drops continue - five different kinds counting both eyes.
Yesterday we went to Denver to see the myeloma specialist. Doug is tolerating the PCP treatment well. We won't find out the effectiveness until the myeloma panel results come back. His blood counts are within normal limits except the glucose is a very high 199. Dr. M thinks it could be the beginning of prednisone induced diabetes. He is referring Doug to our local nurse practitioner for monitoring and treatment if necessary. Just another evil to combat. We are glad there is treatment!
We had good travel weather both ways, and Doug felt up to driving. We keep counting our blessings.
Love to all.
Yesterday we went to Denver to see the myeloma specialist. Doug is tolerating the PCP treatment well. We won't find out the effectiveness until the myeloma panel results come back. His blood counts are within normal limits except the glucose is a very high 199. Dr. M thinks it could be the beginning of prednisone induced diabetes. He is referring Doug to our local nurse practitioner for monitoring and treatment if necessary. Just another evil to combat. We are glad there is treatment!
We had good travel weather both ways, and Doug felt up to driving. We keep counting our blessings.
Love to all.
Tuesday, November 3, 2015
On PCP for two weeks, glaucoma eye surgery
Doug started his Pomalyst, cytoxan, prednisone treatment two weeks ago. No side effects to speak of, other than fatigue. We know that some side effects are cumulative and don't show up right away. This seems too good to be true, that he can take the pills at home - no travel, no side effects. Love it! Just hope it is effective in lowering the light chains.
Doug had glaucoma surgery on his right eye four days ago. He had had shunts in both eyes done two years ago, but those shunts plugged up and stopped working. Pressure rose to the point of causing damage to the optic nerve in the right eye. So a glaucoma specialist suggested having a different kind of shunt this time. Only one eye at a time. The last shunt placements went so easily, and we didn't expect this time to be much different. The surgeon used a nerve block in the eye, to make sure there was no involuntary eye movement. No nerve block two years ago. When Doug was wheeled back in the room post surgery, the nurse told us that Doug would have a black eye. Sure enough, he has quite a shiner. No one expected a lot of pain - but when the nerve block wore off several hours later, Doug was in a LOT of pain. Tylenol didn't do anything. We had stronger pain meds on hand, so finally got the pain under control.
When I reached the optical office by phone, the nurse had several questions, and in the end, she said Doug must have had a corneal abrasion. (Scratch on the eyeball surface.) She said that doesn't happen often. I had that 40 years ago and I remember the pain very well.
So although his eye looks awful, he feels okay now, and can see out of that eye. Just was a lot of drama for a while. Now Doug is making up stories of how he got such a big black eye.
Doug had glaucoma surgery on his right eye four days ago. He had had shunts in both eyes done two years ago, but those shunts plugged up and stopped working. Pressure rose to the point of causing damage to the optic nerve in the right eye. So a glaucoma specialist suggested having a different kind of shunt this time. Only one eye at a time. The last shunt placements went so easily, and we didn't expect this time to be much different. The surgeon used a nerve block in the eye, to make sure there was no involuntary eye movement. No nerve block two years ago. When Doug was wheeled back in the room post surgery, the nurse told us that Doug would have a black eye. Sure enough, he has quite a shiner. No one expected a lot of pain - but when the nerve block wore off several hours later, Doug was in a LOT of pain. Tylenol didn't do anything. We had stronger pain meds on hand, so finally got the pain under control.
When I reached the optical office by phone, the nurse had several questions, and in the end, she said Doug must have had a corneal abrasion. (Scratch on the eyeball surface.) She said that doesn't happen often. I had that 40 years ago and I remember the pain very well.
So although his eye looks awful, he feels okay now, and can see out of that eye. Just was a lot of drama for a while. Now Doug is making up stories of how he got such a big black eye.
Friday, October 9, 2015
Will Start PCP treatment
We made the trip to Denver to see the myeloma specialist.
He just got back from a myeloma meeting in Rome Italy. Myeloma specialists from all over the world meet every two years to discuss this disease and learn from each other. We're so fortunate our Dr. M goes to these meetings. He is so well informed about the latest treatments. There is a new monoclonal antibody called Dara that will be approved by the FDA by the end of the year. We would have to come to Denver very frequently in order for Doug to receive it, because the local oncologist is not familiar with it. So that's not a good option for us.
The chemo vacation is over. Doug's light chains continue to rise so he needs to be on treatment. Dr. M gave us two good options:
1. Carfilzomib (Kyprolis), Revlimid and Dex.
The combo is known as CRD. This treatment would be given by IV two days a week and would require that Doug get a port. Possible side effects include heart and kidney problems and lung damage.
2. Pomalidomide (Pomalyst), cytoxan and prednisone.
This combo is known as PCP and is all oral, so Doug can take it at home. The pred is not as strong as the dreaded dex, so he wouldn't have the insomnia and "wired" feeling as with dex. This particular treatment is used for patients 70 and older. Doug isn't quite 70 but he's close.
Possible side effects include fatigue, weakness, low blood counts, gastrointestinal effects, shortness of breath. We'll continue to go to Denver every month for monitoring, and Doug will get blood tests done locally every week at first.
We thought it was a no-brainer. PCP is less toxic and is all pills. Dr. M says it is a good choice for Doug. Doug will start this as soon as the insurance hurdles are complete.
Dr. M dropped the Zometa back to every three months now. Doug is glad of that.
We've been getting out to enjoy the fall color and the beautiful weather. We've done several geocaches which we really enjoy.
Both Doug and I feel so blessed. The availability of good treatments, our excellent specialist, insurance and grants for the expensive drugs, our faith in God, supportive wonderful friends. God is good!
Love to all.
He just got back from a myeloma meeting in Rome Italy. Myeloma specialists from all over the world meet every two years to discuss this disease and learn from each other. We're so fortunate our Dr. M goes to these meetings. He is so well informed about the latest treatments. There is a new monoclonal antibody called Dara that will be approved by the FDA by the end of the year. We would have to come to Denver very frequently in order for Doug to receive it, because the local oncologist is not familiar with it. So that's not a good option for us.
The chemo vacation is over. Doug's light chains continue to rise so he needs to be on treatment. Dr. M gave us two good options:
1. Carfilzomib (Kyprolis), Revlimid and Dex.
The combo is known as CRD. This treatment would be given by IV two days a week and would require that Doug get a port. Possible side effects include heart and kidney problems and lung damage.
2. Pomalidomide (Pomalyst), cytoxan and prednisone.
This combo is known as PCP and is all oral, so Doug can take it at home. The pred is not as strong as the dreaded dex, so he wouldn't have the insomnia and "wired" feeling as with dex. This particular treatment is used for patients 70 and older. Doug isn't quite 70 but he's close.
Possible side effects include fatigue, weakness, low blood counts, gastrointestinal effects, shortness of breath. We'll continue to go to Denver every month for monitoring, and Doug will get blood tests done locally every week at first.
We thought it was a no-brainer. PCP is less toxic and is all pills. Dr. M says it is a good choice for Doug. Doug will start this as soon as the insurance hurdles are complete.
Dr. M dropped the Zometa back to every three months now. Doug is glad of that.
We've been getting out to enjoy the fall color and the beautiful weather. We've done several geocaches which we really enjoy.
Both Doug and I feel so blessed. The availability of good treatments, our excellent specialist, insurance and grants for the expensive drugs, our faith in God, supportive wonderful friends. God is good!
Love to all.
Friday, August 21, 2015
Lambda Light Chains Go Up Again
Last week we had the monthly myeloma specialist visit in Denver. He said he is happy because Doug is feeling good. So at this time he does not want to start Doug on chemo. Sounds good to us!
Today we got the results of the special myeloma panel blood work. The Lambda light chains are up again (from 77.88 last month to 130.02 this month) and the Kappa is down again. The ratio is .07 now. Not good, but as I keep saying, we expect to see this - it's inevitable. At some point treatment will need to be restarted, but for now we will keep enjoying this "chemo vacation".
We have done a few geocaches, and today we walked a path by the river. A friend gifted us with a used elliptical machine, which Doug is able to do; he needs the exercise. We are both using it. I was going to say 'enjoying' it, but that's a stretch, at least while we get used to it.
Doug is getting acupuncture for his peripheral neuropathy. He's had several treatments, and although he can't tell any difference, I think his gait is better. No telling if the acupuncture is working, or if elapsed time is helping. Either way, life is good. Praise God!
Love to all.
“The man who has forgotten to be thankful has fallen asleep in life.” Robert Louis Stevenson
Today we got the results of the special myeloma panel blood work. The Lambda light chains are up again (from 77.88 last month to 130.02 this month) and the Kappa is down again. The ratio is .07 now. Not good, but as I keep saying, we expect to see this - it's inevitable. At some point treatment will need to be restarted, but for now we will keep enjoying this "chemo vacation".
We have done a few geocaches, and today we walked a path by the river. A friend gifted us with a used elliptical machine, which Doug is able to do; he needs the exercise. We are both using it. I was going to say 'enjoying' it, but that's a stretch, at least while we get used to it.
Doug is getting acupuncture for his peripheral neuropathy. He's had several treatments, and although he can't tell any difference, I think his gait is better. No telling if the acupuncture is working, or if elapsed time is helping. Either way, life is good. Praise God!
Love to all.
“The man who has forgotten to be thankful has fallen asleep in life.” Robert Louis Stevenson
Friday, July 17, 2015
Kappa/Lambda Ratio Low; Early Relapse?
We got the results of the latest myeloma panel. Up to now, both the Lambda and Kappa light chains have been rising - but the ratio has been within normal limits. Now the Lambda is rising and Kappa is dropping, so the ratio is low. The specialist has been watching, and he said as long as both go up, it could mean recovery of immune system. If Lambda goes up more than Kappa, it could mean a relapse.
And now the myeloma panel shows a slight M-spike. This is the first time we've seen an M-spike since the myeloma mutated to light chain deposition disease back in 2011. Interesting, but may not be anything to be concerned about.
We have faith in the specialist and we know he has a plan, so we are not worried, just alert for changes. Knowing there are new drugs available is reassuring.
We also have faith and trust in God, and we know HE has a plan!
Both Doug and I have been expecting another relapse at some point, that's the nature of the beast. Sometimes the myeloma sleeps, but it always awakens eventually.
Meanwhile, Doug feels good and we are grateful.
Love to all.
And now the myeloma panel shows a slight M-spike. This is the first time we've seen an M-spike since the myeloma mutated to light chain deposition disease back in 2011. Interesting, but may not be anything to be concerned about.
We have faith in the specialist and we know he has a plan, so we are not worried, just alert for changes. Knowing there are new drugs available is reassuring.
We also have faith and trust in God, and we know HE has a plan!
Both Doug and I have been expecting another relapse at some point, that's the nature of the beast. Sometimes the myeloma sleeps, but it always awakens eventually.
Meanwhile, Doug feels good and we are grateful.
Love to all.
"Peace isn’t the absence of the dark. Peace is the assurance of God’s presence in the midst of the dark." Ann Voskamp
Thursday, July 9, 2015
IgG now, was IgA
The regular monthly trip to Denver today. We had an 8:30 a.m. appointment so left at 5:30. It was already almost light out, thankfully.
Lab results are mostly okay, with just a few borderline but nothing alarming. We won't get the myeloma panel results for 5 to 7 days.
Interestingly, Doug's myeloma has changed from IgA Lambda to IgG. The specialist isn't sure what this means, either a lab error or the myeloma is changing. But he doesn't think it has any significance as to treatment in the future.
Doug is still on chemo vacation. He's not having clinical problems (aside from the neuropathy) so the specialist doesn't want to initiate any new drugs yet.
Doug didn't get the Zometa infusion this time, since it had been only three weeks since the last one. He'll get it next month. That saved an hour of infusion time.
So it was a good visit. Afterward we stopped for a late breakfast - in the hospital cafeteria of all places. They have really good hash browns and sausage. Eggs are passable. And we didn't have to move the car.
We are counting our blessings and praising the Lord!
Love to all.
Lab results are mostly okay, with just a few borderline but nothing alarming. We won't get the myeloma panel results for 5 to 7 days.
Interestingly, Doug's myeloma has changed from IgA Lambda to IgG. The specialist isn't sure what this means, either a lab error or the myeloma is changing. But he doesn't think it has any significance as to treatment in the future.
Doug is still on chemo vacation. He's not having clinical problems (aside from the neuropathy) so the specialist doesn't want to initiate any new drugs yet.
Doug didn't get the Zometa infusion this time, since it had been only three weeks since the last one. He'll get it next month. That saved an hour of infusion time.
So it was a good visit. Afterward we stopped for a late breakfast - in the hospital cafeteria of all places. They have really good hash browns and sausage. Eggs are passable. And we didn't have to move the car.
We are counting our blessings and praising the Lord!
Love to all.
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