I owe an apology to those who read this blog. I haven't updated in a while. Had an email from a long distance friend who was concerned because she hadn't seen any postings recently. The old saying is true: No news is good news.
Eyes: Doug is having to do three kinds of glaucoma drops three times a day, but his eye pressure is holding at a high but acceptable (for him) level. A lubricating drop has been added to the mix - we love the low humidity here but have to moisturize skin and eyes.
Myeloma: Had the last visit with the myeloma specialist Dec 21. Labs looked good. We now can see him every six weeks rather than every four weeks. Zometa will be given every twelve weeks. The longer break between trips to Denver is welcome.
The FDA has approved three new drugs for myeloma! That's really good news for the future, as we know the cancer cells will eventually "outsmart" the present drug regime.
He has had some GI side effects. Usually constipation but occasionally it goes the other way.
Diabetes: We are doing okay with the low carb eating. His glucose is higher than ideal but our NP says she knows it is due to the prednisone and she's not going to worry about it.
I'm glad eggs are now recognized as safe to eat every day (not that we do), and not a danger to cholesterol. We eat complex carbs in moderation, and a lot of healthy fats - nuts, coconut oil, olive oil, even real butter in moderation. No more "light" or "fat free" foods; they take away the fat but substitute sugar or other chemicals instead. Read the labels.
Doug had a lipid panel done two weeks ago - his cholesterol level was the best it's been in years!
We are staying inside during the cold weather and avoiding anyone who is coughing or has a sore throat. Glad our little dogs can get exercise playing inside.
So we are doing well and appreciating all our blessings, thankful for God's provision.
Love to all.
Wednesday, February 3, 2016
Monday, December 14, 2015
Passed Out, stopped Lisinopril
We had some drama in the early hours of November 28. I awoke to a noise, and found Doug on the floor! He had passed out in the hallway. By the time I got to him he was awake but couldn't get up. While trying to get up, with my help, he passed out again! He wasn't responsive for a short while - scared me. I called 911 but by the time the squad got to us, Doug seemed okay. I had left him on the floor until they arrived. The squad took him to the ER to get checked out. The ER doc thought it may have been a TIA or dehydration. Doug got a tetanus shot for a small forehead abrasion; fortunately there were no other injuries, thank God.
A few days later our NP ordered an ultrasound of Doug's carotid arteries just to be sure he has adequate blood flow; that turned out normal.
Today we had an appointment with Doug's nephrologist/internal medicine guy, Dr. K. Doug's membranous glomerulonephritis (kidney disease) is in remission!
Doug's blood pressure has been on the low side for quite some time. No one worried about it as he was not dizzy - until recently. Dr. K says if Doug is passing out, his blood pressure is too low! So he stopped the lisinopril. He also feels Doug is still dehydrated, although he really has been drinking more water. Dr. K also stressed that Doug needs to exercise as much as possible. I'm so glad that a good friend gave us her elliptical machine a few months ago. That's a huge blessing especially in the winter.
Doug is on metformin for his secondary diabetes, plus he is counting carbs. I have discovered that a lot of low carb recipes are high fat! We're not doing that. We're doing common sense eating, limiting starchy foods, and no sugary stuff. And Doug tests his glucose twice a day.
A few days later our NP ordered an ultrasound of Doug's carotid arteries just to be sure he has adequate blood flow; that turned out normal.
Today we had an appointment with Doug's nephrologist/internal medicine guy, Dr. K. Doug's membranous glomerulonephritis (kidney disease) is in remission!
Doug's blood pressure has been on the low side for quite some time. No one worried about it as he was not dizzy - until recently. Dr. K says if Doug is passing out, his blood pressure is too low! So he stopped the lisinopril. He also feels Doug is still dehydrated, although he really has been drinking more water. Dr. K also stressed that Doug needs to exercise as much as possible. I'm so glad that a good friend gave us her elliptical machine a few months ago. That's a huge blessing especially in the winter.
Doug is on metformin for his secondary diabetes, plus he is counting carbs. I have discovered that a lot of low carb recipes are high fat! We're not doing that. We're doing common sense eating, limiting starchy foods, and no sugary stuff. And Doug tests his glucose twice a day.
God bless you all.
Wednesday, November 25, 2015
Secondary Diabetes
Doug now officially has "secondary diabetes", which means it is from a drug he is taking. In this case, prednisone, part of his myeloma treatment. He has been started on metformin and is using a glucometer to test his blood daily. Adjustments might be necessary once we see if the metformin controls it.
And his right eye - the one that had surgery for glaucoma - has high intra ocular pressure again. The eye surgeon says Doug is still in the post-op phase and it is possible for the pressure to jump around.
Finding out that Doug is now diabetic, and getting a glucometer after a run-around with medicare, has been a bit stressful. We will adjust.
Happy Thanksgiving to all!
And his right eye - the one that had surgery for glaucoma - has high intra ocular pressure again. The eye surgeon says Doug is still in the post-op phase and it is possible for the pressure to jump around.
Finding out that Doug is now diabetic, and getting a glucometer after a run-around with medicare, has been a bit stressful. We will adjust.
Happy Thanksgiving to all!
Thursday, November 19, 2015
Light Chains Dropping!
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
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
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.
Subscribe to:
Posts (Atom)
