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.
Friday, October 9, 2015
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.
Friday, June 26, 2015
Light Chains Still Rising; no chemo yet
Doug had his monthly Denver myeloma specialist visit last week. The cancer numbers - Lambda light chains in Doug's case - are starting to rise a bit faster. But the Kappa light chains are also rising, so the Kappa/Lambda ratio is within normal limits for now. As long as the ratio is okay, Dr. M doesn't want to start the new chemo yet. Sounds good to us!
The peripheral neuropathy in his feet is still present, but Doug is able to cope with it. Dr. M says we have the option of trying Cymbalta, but we decided against it for now. Better not to add another drug to his system unless he really needs it.
Summer is in full swing here, with the usual influx of summer people. Traffic is busy by our small town standards, and our only grocery store is swamped. Best not to complain too much since the tourists spend a lot and that helps our tax base.
We have started geocaching again after several years of Doug not being able to do it. Fun way to get outside and be more active.
Love to all.
The peripheral neuropathy in his feet is still present, but Doug is able to cope with it. Dr. M says we have the option of trying Cymbalta, but we decided against it for now. Better not to add another drug to his system unless he really needs it.
Summer is in full swing here, with the usual influx of summer people. Traffic is busy by our small town standards, and our only grocery store is swamped. Best not to complain too much since the tourists spend a lot and that helps our tax base.
We have started geocaching again after several years of Doug not being able to do it. Fun way to get outside and be more active.
Love to all.
Saturday, June 13, 2015
Cold/cough; Eye Infection
We had to cancel our trip to Nebraska again. Last month we cancelled due to Doug getting the flu.
This time he developed a cold with cough and a slight fever. And green mucus in both eyes.
We called our local clinic but couldn't get in yesterday. Today is Saturday and the clinic is closed. We had two choices - go to Salida to the ER, or drive up to Leadville to the urgent care clinic. We opted for Leadville. Doug was seen by a young PA who was very good. He took an excellent history and did a brief physical. He prescribed an antibiotic eye ointment and said to do warm compresses on the eyes every four hours. The cold is most likely a viral infection. He refilled a codeine cough syrup that has worked for Doug in the past, and considering Doug's compromised immune system, prescribed an antibiotic to prevent further secondary infection. We were very happy with the level of care at this clinic.
Doug's blood pressure is low at 101/67 but he's not dizzy. We're going to keep checking the BP.
We are counting our blessings, especially that all this came on before we left home on our trip. So much better to be home when not feeling well!
Love to all.
This time he developed a cold with cough and a slight fever. And green mucus in both eyes.
We called our local clinic but couldn't get in yesterday. Today is Saturday and the clinic is closed. We had two choices - go to Salida to the ER, or drive up to Leadville to the urgent care clinic. We opted for Leadville. Doug was seen by a young PA who was very good. He took an excellent history and did a brief physical. He prescribed an antibiotic eye ointment and said to do warm compresses on the eyes every four hours. The cold is most likely a viral infection. He refilled a codeine cough syrup that has worked for Doug in the past, and considering Doug's compromised immune system, prescribed an antibiotic to prevent further secondary infection. We were very happy with the level of care at this clinic.
Doug's blood pressure is low at 101/67 but he's not dizzy. We're going to keep checking the BP.
We are counting our blessings, especially that all this came on before we left home on our trip. So much better to be home when not feeling well!
Love to all.
Wednesday, June 10, 2015
Off Gabapentin; Kidneys doing good
Doug has weaned off the gabapentin, with the doc's approval. The increased dose wasn't helping the peripheral neuropathy, and it was making him very drowsy. So he decided to quit it since we have an upcoming trip to Nebraska.
Doug has finished his physical therapy; it has helped him. His gait is still off, but better than before, and his balance is quite a bit better.
Yesterday we went to the nephrologist in Salida. He says Doug's kidneys are doing pretty good now. Just lay off the salt! He never tells anyone "no salt" since he knows they won't do it, but reduce salt. The doc is putting Doug on a small dose of Lisninopril. It's a blood pressure drug; Doug's BP is already on the low side, but the kidney specialist says Lisinopril helps protect kidneys from the myeloma protein. So as long as Doug's pressure doesn't drop too low he wants him on it.
We have an appointment with the myeloma specialist June 19. For now, we are doing well, and enjoying the warmer weather. We started up geocaching again - haven't done that for some time. Doug can't do climbing or actual hiking, but there are quite a few easy caches to find. Fun way to get outside.
Blessings to all.
Doug has finished his physical therapy; it has helped him. His gait is still off, but better than before, and his balance is quite a bit better.
Yesterday we went to the nephrologist in Salida. He says Doug's kidneys are doing pretty good now. Just lay off the salt! He never tells anyone "no salt" since he knows they won't do it, but reduce salt. The doc is putting Doug on a small dose of Lisninopril. It's a blood pressure drug; Doug's BP is already on the low side, but the kidney specialist says Lisinopril helps protect kidneys from the myeloma protein. So as long as Doug's pressure doesn't drop too low he wants him on it.
We have an appointment with the myeloma specialist June 19. For now, we are doing well, and enjoying the warmer weather. We started up geocaching again - haven't done that for some time. Doug can't do climbing or actual hiking, but there are quite a few easy caches to find. Fun way to get outside.
Blessings to all.
Subscribe to:
Posts (Atom)
