Today Doug had his infusion, cycle 8 which means the 8th month of daratumumab/dex. No Revlimid today. The dex was given IV; he will have a hard time sleeping tonight.
It was good to see our favorite infusion nurse Chris. She showed us photos of her daughter's wedding.
She knows Doug likes cheeseburgers, so she had already put in a special lunch order for the hospital kitchen. Cheeseburgers are not on the menu.
Doug weighed in at 149 today. He ate breakfast at home, and another one before infusion: scrambled eggs & hash browns. I don't know where those calories go.
All his pre-infusion blood tests came back with good results:
WBC 3.6
HGB 12.8
PLT 131
ANC 2.1
While Doug was getting his infusion, and a foot massage, I went to Walmart and did some shopping.
Just another day for a myeloma patient and caregiver.
We are praising God for his provision and praying for friends who face problems ahead.
Tomorrow is a rest day and then on Saturday an old friend who we know from our RV days is stopping by.
Thursday, September 19, 2019
Wednesday, September 18, 2019
No more Revlimid!
Yesterday we saw Dr. Jeff Matous in Denver. Our appointment was a make-up since we had to cancel the last one when Doug got sick. This one was for 8:15 am! I was a little apprehensive to drive in the dark but I did okay. Thanks to all who were praying for safe travel; your prayers worked! We left the house at 4:15 a.m. since we didn't know what kind of going to work traffic we might run into. We got to PSL (presbyterian St Luke) at 7:00 so we went to the cafeteria for a bite.
Doug's weight was 150, not the worst but disappointing because he has been eating as much high calorie food as he can, with the good fats.
I had told the doc's nurse navigator that Doug has been feeling very tired and 'deflated'; he doesn't have any interest in doing much but he has been pushing himself. So when Dr. M came in the room he sat down at Doug's eye level and asked Doug how he was feeling. Doug said the usual, but finally he admitted that he doesn't want to get out of bed. Dr. M said that Doug's quality of life wasn't good right now. We both agreed. In addition to losing weight and fatigue he feels cold all the time.
Dr. M said it is the Revlimid causing the problems, not the Dara. Doug's body just can't tolerate Revlimid any longer.
He ordered a blood draw to check for low thyroid. Doug has been checked for that but not in a while.
Dr. M is having Doug stop the Revlimid immediately. He wants to wait a few weeks until Doug feels pretty good, and then he will replace the Rev with Pomalyst, a drug Doug has taken before but not in combination with Revlimid.
The Lambda light chains are still creeping upward. Last time they were 36.9 and now they are 41.2 mg/L. Dr M is keeping a close eye out but still feels he doesn't need to make any immediate change. Right now Doug is on a once a month infusion. In the future he could change back to every two weeks.
Doug has an infusion tomorrow. He will be getting just the Dara/dex.
We will see Dr. Matous in Denver in two months.
Doug's PCP (primary care provider) has increased his dose of Lexapro from 10 to 20 mg. She said if he still feels 'down' after a couple months she would add another drug. He now has a diagnosis of Dysthymic disorder. It's a type of depression; in Doug's case caused by all the powerful drugs he is taking and has taken in the past.
We are thankful that Doug has a medical team who care about his quality of life, not just how long they can keep him alive. We continue to be blessed by the people God has surrounding us.
Love to all.
Doug's weight was 150, not the worst but disappointing because he has been eating as much high calorie food as he can, with the good fats.
I had told the doc's nurse navigator that Doug has been feeling very tired and 'deflated'; he doesn't have any interest in doing much but he has been pushing himself. So when Dr. M came in the room he sat down at Doug's eye level and asked Doug how he was feeling. Doug said the usual, but finally he admitted that he doesn't want to get out of bed. Dr. M said that Doug's quality of life wasn't good right now. We both agreed. In addition to losing weight and fatigue he feels cold all the time.
Dr. M said it is the Revlimid causing the problems, not the Dara. Doug's body just can't tolerate Revlimid any longer.
He ordered a blood draw to check for low thyroid. Doug has been checked for that but not in a while.
Dr. M is having Doug stop the Revlimid immediately. He wants to wait a few weeks until Doug feels pretty good, and then he will replace the Rev with Pomalyst, a drug Doug has taken before but not in combination with Revlimid.
The Lambda light chains are still creeping upward. Last time they were 36.9 and now they are 41.2 mg/L. Dr M is keeping a close eye out but still feels he doesn't need to make any immediate change. Right now Doug is on a once a month infusion. In the future he could change back to every two weeks.
Doug has an infusion tomorrow. He will be getting just the Dara/dex.
We will see Dr. Matous in Denver in two months.
Doug's PCP (primary care provider) has increased his dose of Lexapro from 10 to 20 mg. She said if he still feels 'down' after a couple months she would add another drug. He now has a diagnosis of Dysthymic disorder. It's a type of depression; in Doug's case caused by all the powerful drugs he is taking and has taken in the past.
We are thankful that Doug has a medical team who care about his quality of life, not just how long they can keep him alive. We continue to be blessed by the people God has surrounding us.
Love to all.
May you grow to love and accept the you God is making you to be. May you walk in a new level of grace and gratitude that gives you peace and leaves others encouraged. May you be more apt to look forward with hope than you are to look back with regret. May your heart spill over with joy at the very thought of the story God is writing with your life. Rest in His love.
Philippians 4:4-5
Wednesday, September 4, 2019
Sick, cancelled Denver doc
We were supposed to go see Dr. Matous the myeloma specialist in Denver today.
But Doug got sick last night. I left home for a meeting at 6:30 in the evening. When I got home at 8:30 Doug was sick; he had been vomiting, had diarrhea and clammy skin. No fever.
So in the morning I called and left a message to cancel our appointment. The nurse called back and asked a few questions and said to call if needed.
Doug did get a little sleep. When he woke up I took his temp - 97 degrees. He ate a little, drank fluids and went back to bed. I've been taking his temp about every hour. It went up to 99.2 at 5 p.m. but went back down to 99 shortly after. I will keep checking it, but he feels a lot better and has been eating small amounts. I'm not going to get too excited but will stay alert. Fevers in an immunocompromised person can't be ignored.
We did get a rescheduled time - for September 17 at 8:15 a.m. That's early! It takes us 3 hours each way since I avoid the busiest roads. But that was the only date that let us see Dr. M and not the NP, so I took it. We could use prayers that I will be able to see well enough in the dark.
Last time I wrote I told you that Doug was gaining weight. The docs had taken him off Revlimid two weeks before the ear surgery and two weeks after, so he felt pretty good. Now that he has been taking Rev again, he dropped a couple pounds. He is eating as much as he can and gained some back. Two steps forward, one step back. That's the way it goes.
Our lovely neighbor brought food to us this afternoon. Sweet.
God's blessings to you all.
But Doug got sick last night. I left home for a meeting at 6:30 in the evening. When I got home at 8:30 Doug was sick; he had been vomiting, had diarrhea and clammy skin. No fever.
So in the morning I called and left a message to cancel our appointment. The nurse called back and asked a few questions and said to call if needed.
Doug did get a little sleep. When he woke up I took his temp - 97 degrees. He ate a little, drank fluids and went back to bed. I've been taking his temp about every hour. It went up to 99.2 at 5 p.m. but went back down to 99 shortly after. I will keep checking it, but he feels a lot better and has been eating small amounts. I'm not going to get too excited but will stay alert. Fevers in an immunocompromised person can't be ignored.
We did get a rescheduled time - for September 17 at 8:15 a.m. That's early! It takes us 3 hours each way since I avoid the busiest roads. But that was the only date that let us see Dr. M and not the NP, so I took it. We could use prayers that I will be able to see well enough in the dark.
Last time I wrote I told you that Doug was gaining weight. The docs had taken him off Revlimid two weeks before the ear surgery and two weeks after, so he felt pretty good. Now that he has been taking Rev again, he dropped a couple pounds. He is eating as much as he can and gained some back. Two steps forward, one step back. That's the way it goes.
Our lovely neighbor brought food to us this afternoon. Sweet.
God's blessings to you all.
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