Doug stopped the Ninlaro with the oncologist's approval, since it wasn't working anyway. His fatigue has lessened some.
Last Thursday we drove to Colorado Springs - a two hour drive each way - for Doug's cardiac stress test. We had to leave at 5 a.m., well before dawn. I took the first half of the drive since I can see a little better in the dark. We had quite a bit of fog. The stress test was via nuclear medicine, since he has a heart stent. We won't get results for a while.
After that, we had time to get lunch, then on to an appointment with the glaucoma specialist. Doug's eye pressure is high in the eye that got the Zen Gel stent last November. So he has to go back on prescription eye drops. The other eye is already on eye drops. Doug is losing more eyesight. We go back in two months.
We got home about 4:30 p.m. A long day but safe travel.
Monday we will have another long day, this time in Denver, with the PET scan and oncologist appointment.
We are past the ten year mark!
Love to all.
Saturday, September 8, 2018
Friday, August 10, 2018
Need PET scan, Ninlaro not working
The last blood test (MM panel) showed the Lambda light chains rose again. From 139.2 to 197.8. Normal is 5 to 26. So the Ninlaro is not improving things.
Today we went to Denver to see the Myeloma specialist. He wants Doug to have a PET scan, to check for any new plasmacytomas.
A Plasmacytoma is a plasma cell tumor that grows within soft tissue or in bone. Myeloma is a cancer of plasma blood cells. They originate in bone marrow.
The results of the PET scan will help the doc decide on future treatment. Whichever drug it is, we know it will be given by infusion.
The PET scan is scheduled for September 10, in Denver. Early a.m. and then we will stick around so the doc can get results and discuss with us. It might be a long day.
Denver traffic was very busy as usual, but no huge delays. We shared the driving and it was a safe trip, praise God!
Doug is still having the fatigue but he is coping well.
Meanwhile life goes on. We are looking forward to a birthday party for our son who will turn 50! How did that happen? He's a wonderful son and father of our grandkids.
Love to all.
Today we went to Denver to see the Myeloma specialist. He wants Doug to have a PET scan, to check for any new plasmacytomas.
A Plasmacytoma is a plasma cell tumor that grows within soft tissue or in bone. Myeloma is a cancer of plasma blood cells. They originate in bone marrow.
The results of the PET scan will help the doc decide on future treatment. Whichever drug it is, we know it will be given by infusion.
The PET scan is scheduled for September 10, in Denver. Early a.m. and then we will stick around so the doc can get results and discuss with us. It might be a long day.
Denver traffic was very busy as usual, but no huge delays. We shared the driving and it was a safe trip, praise God!
Doug is still having the fatigue but he is coping well.
Meanwhile life goes on. We are looking forward to a birthday party for our son who will turn 50! How did that happen? He's a wonderful son and father of our grandkids.
Love to all.
Thursday, July 26, 2018
Numb or number?
Doug is not sure if his feet are getting more numbness. It's hard to tell because he already has some peripheral neuropathy on the soles of his feet from when he was on Velcade. So is it new numbness, or the same old? When we were talking about it and said "numb or number" for the first time, it sounded so funny - like dumb or dumber! Hey, ya gotta laugh sometimes! He reported it to the oncologist office, but the doc wants Doug to stay on Ninlaro and keep a close eye on his feet. He did ask if Doug was having any problem walking, and the answer is no.
The fatigue is still there. Doug is learning how to manage it. Naps are good!
We went to Colorado Springs today for Doug's blood draw, so in 7 to 10 days we should know if the Ninlaro is having any effect.
We've had a little rain lately. Not as much as we need, but we appreciate it.
Love to all.
The fatigue is still there. Doug is learning how to manage it. Naps are good!
We went to Colorado Springs today for Doug's blood draw, so in 7 to 10 days we should know if the Ninlaro is having any effect.
We've had a little rain lately. Not as much as we need, but we appreciate it.
Love to all.
Friday, July 6, 2018
Ninlaro (ixazomib) started
Doug took his first dose of the Ninlaro on July 4. What a way to celebrate! He has had some nausea - Zofran works well to combat that. Yesterday, July 5, he was very fatigued. We drove to Walmart, 30 minutes away. Doug said for me to go ahead and drive. He thought he would be able to walk around the store, but after ten minutes he gave up and went to sit in the car while I shopped. Luckily it wasn't too hot. We don't have any plans to go anywhere soon, so he can rest as he needs.
So far, so good. We won't know how Ninlaro impacts his blood counts for a couple of weeks. And we won't know if it will cause problems with nerve damage yet. When he was on Velcade, it took several months before the nerve damage became evident and he had to stop the drug.
Colorado is having wildfires - one, the Weston Pass fire - is about 20 miles from our town. We can see the smoke, and yesterday the smell was very strong. It is not a danger to us; we have mountains between the fire and us. Hwy 285, the road we take to Denver, has been closed for several days.
We are praying for protection for the firefighters, and for the people who have had to evacuate their homes.
We are blessed, and we try to take nothing for granted.
Love to all.
"You will keep in perfect peace all who trust in You, whose thoughts are fixed on you! Trust in the Lord always, for the Lord God is the eternal Rock." Isaiah 26;3-4
So far, so good. We won't know how Ninlaro impacts his blood counts for a couple of weeks. And we won't know if it will cause problems with nerve damage yet. When he was on Velcade, it took several months before the nerve damage became evident and he had to stop the drug.
Colorado is having wildfires - one, the Weston Pass fire - is about 20 miles from our town. We can see the smoke, and yesterday the smell was very strong. It is not a danger to us; we have mountains between the fire and us. Hwy 285, the road we take to Denver, has been closed for several days.
We are praying for protection for the firefighters, and for the people who have had to evacuate their homes.
We are blessed, and we try to take nothing for granted.
Love to all.
"You will keep in perfect peace all who trust in You, whose thoughts are fixed on you! Trust in the Lord always, for the Lord God is the eternal Rock." Isaiah 26;3-4
Sunday, June 24, 2018
Another RELAPSE - Starting Ninlaro soon
Another relapse.
After months of watching Doug's myeloma blood panel results climbing, the oncologist is certain he is relapsing again. So he is adding a new drug to what Doug is already taking. Ixazomib (brand name Ninlaro) is a capsule - the first oral proteasome inhibitor. The good thing is that Doug won't be needing infusions yet.
There are a few possible side effects to watch for:
1. Low blood counts
2. More G.I. upsets
3. Nausea
4. Diarrhea
5. Nerve damage
He will be monitored closely for the nerve damage. Doug already has peripheral nerve damage in his feet from a related drug, Velcade. If he starts to feel any tingling, pins and needles, pain or numbness, the doc said to immediately report it. This drug will be stopped if the symptoms are severe. Nerve damage is not reversible.
It will take a couple of weeks before he can start the ixazomib - gotta get insurance approval first. It is an approved drug, so approval shouldn't be a problem, just takes time.
So Doug's drug regime will be: Pomalyst, cytoxan, prednisone, ixazomib. All pills.
Periods of remission, followed by relapses, are standard for Multiple Myeloma.
Doug has had some good remissions. In fact, he feels pretty good right now. If it wasn't for the blood tests, we wouldn't know he is relapsing.
He has been doing a lot of yard work this summer. We have planted yarrow, an aspen tree, and silver lace vines. He has dug all the holes - which in this area means dealing with lots of rocks! Some of the rocks he has dug up are melon size.
In August, it will be 10 years since diagnosis. Amazing. We've dealt with some hard things but we have so very many things we are thankful for.
We have friends who have life threatening medical conditions - with no treatment available. We are very thankful there is treatment, even though as yet no cure, for myeloma.
Love to all.
After months of watching Doug's myeloma blood panel results climbing, the oncologist is certain he is relapsing again. So he is adding a new drug to what Doug is already taking. Ixazomib (brand name Ninlaro) is a capsule - the first oral proteasome inhibitor. The good thing is that Doug won't be needing infusions yet.
There are a few possible side effects to watch for:
1. Low blood counts
2. More G.I. upsets
3. Nausea
4. Diarrhea
5. Nerve damage
He will be monitored closely for the nerve damage. Doug already has peripheral nerve damage in his feet from a related drug, Velcade. If he starts to feel any tingling, pins and needles, pain or numbness, the doc said to immediately report it. This drug will be stopped if the symptoms are severe. Nerve damage is not reversible.
It will take a couple of weeks before he can start the ixazomib - gotta get insurance approval first. It is an approved drug, so approval shouldn't be a problem, just takes time.
So Doug's drug regime will be: Pomalyst, cytoxan, prednisone, ixazomib. All pills.
Periods of remission, followed by relapses, are standard for Multiple Myeloma.
Doug has had some good remissions. In fact, he feels pretty good right now. If it wasn't for the blood tests, we wouldn't know he is relapsing.
He has been doing a lot of yard work this summer. We have planted yarrow, an aspen tree, and silver lace vines. He has dug all the holes - which in this area means dealing with lots of rocks! Some of the rocks he has dug up are melon size.
In August, it will be 10 years since diagnosis. Amazing. We've dealt with some hard things but we have so very many things we are thankful for.
We have friends who have life threatening medical conditions - with no treatment available. We are very thankful there is treatment, even though as yet no cure, for myeloma.
Love to all.
Saturday, December 2, 2017
Heading into another relapse?
Two months ago, our myeloma specialist saw the light chain numbers were drifting upwards. So he added cytoxan and prednisone back to the pomalyst; he was thinking a 'tweak' would be enough. But it wasn't. The bad numbers continue to climb slowly - Doug is headed out of remission. This will be relapse #5. So there will be a change to different drugs, but not yet.
Doug's glaucoma has not been controlled, although he has already had two surgeries and multiple kinds of eye drops. Vision has been lost. So we were referred to a glaucoma specialist in Colorado Springs. After a consult, he offered more surgery as an option. We decided to go ahead and have the eye surgeries, a different kind for each eye. The left eye got a newer kind of stent, and the right eye (which already has two stents) underwent a diode laser procedure. During this healing process, Doug's vision is very blurry. He can't even read the big F on the eye chart. The doc said this is fairly common and he expects it to get better. No telling how fast. So he can't drive.
So I am doing all the driving - which is okay, but I have a history of getting drowsy when doing highway driving. Once years ago, I did fall asleep and had a near accident. We are making lots of medical trips to Denver and the Springs - not my idea of fun. But the good Lord is protecting us. My tools for staying alert are praying, caffeine pills (I don't drink coffee) and listening to audiobooks. It's working so far.
Once Doug's eyes are healed, the oncologist will decide on what treatment for the myeloma. Fortunately for us, there are three good options - drugs that were not available a few years ago.
This leg of the journey is not that different from what we've experienced before, but it feels stressful.
We are blessed with excellent medical care, and people who pray for us.
"Trust God from the bottom of your heart; don't try to figure out everything on your own. Listen for God's voice in everything you do, everywhere you go; he's the one who will keep you on track."
Proverbs 3:5-6 The Message
Doug's glaucoma has not been controlled, although he has already had two surgeries and multiple kinds of eye drops. Vision has been lost. So we were referred to a glaucoma specialist in Colorado Springs. After a consult, he offered more surgery as an option. We decided to go ahead and have the eye surgeries, a different kind for each eye. The left eye got a newer kind of stent, and the right eye (which already has two stents) underwent a diode laser procedure. During this healing process, Doug's vision is very blurry. He can't even read the big F on the eye chart. The doc said this is fairly common and he expects it to get better. No telling how fast. So he can't drive.
So I am doing all the driving - which is okay, but I have a history of getting drowsy when doing highway driving. Once years ago, I did fall asleep and had a near accident. We are making lots of medical trips to Denver and the Springs - not my idea of fun. But the good Lord is protecting us. My tools for staying alert are praying, caffeine pills (I don't drink coffee) and listening to audiobooks. It's working so far.
Once Doug's eyes are healed, the oncologist will decide on what treatment for the myeloma. Fortunately for us, there are three good options - drugs that were not available a few years ago.
This leg of the journey is not that different from what we've experienced before, but it feels stressful.
We are blessed with excellent medical care, and people who pray for us.
"Trust God from the bottom of your heart; don't try to figure out everything on your own. Listen for God's voice in everything you do, everywhere you go; he's the one who will keep you on track."
Proverbs 3:5-6 The Message
Friday, October 6, 2017
9 years! Cytoxan and pred added back to Pom
Dr. M's nurse navigator called. He says Doug is slowly headed into a relapse if we don't do something.
He wants to keep Doug on Pomalyst but add Cytoxan and prednisone back. This is the drug combo PCP he was put on in October 2015. It put him back into remission and Doug and went on Pomalyst MAINTENANCE (no cytoxan and lower dose of Pom) in April 2016. The prednisone was stopped in June 2017.2
Doug has been in a good remission for 20 months. We hope the addition of Cytoxan and prednisone will keep him in remission.
It has been 9 years on this Multiple Myeloma journey. It's been a bumpy road at times - once after the stem cell transplant in 2009, I thought the road had been washed out totally. This time it feels more like we see a sign "Slow Down - Road Work Ahead". Hopefully just a minor slowdown with no stops.
Love to all.
"Give thanks to the Lord, for he is good! His faithful love endures forever." Ps 136:1
He wants to keep Doug on Pomalyst but add Cytoxan and prednisone back. This is the drug combo PCP he was put on in October 2015. It put him back into remission and Doug and went on Pomalyst MAINTENANCE (no cytoxan and lower dose of Pom) in April 2016. The prednisone was stopped in June 2017.2
Doug has been in a good remission for 20 months. We hope the addition of Cytoxan and prednisone will keep him in remission.
It has been 9 years on this Multiple Myeloma journey. It's been a bumpy road at times - once after the stem cell transplant in 2009, I thought the road had been washed out totally. This time it feels more like we see a sign "Slow Down - Road Work Ahead". Hopefully just a minor slowdown with no stops.
Love to all.
"Give thanks to the Lord, for he is good! His faithful love endures forever." Ps 136:1
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