Doug had his echocardiogram and the results are good. So he is on track to start the Kyprolis/dex.
His first infusion is scheduled for Thursday April 30. He will have another one the day after. The infusion clinic has five hours reserved for him. The actual infusion will take only 30 minutes, but a lot of things have to happen before that. The nurse will access his port using sterile technique and draw blood for testing. He has to be hydrated before the Kyprolis is given, to protect his kidneys and other organs. It takes time for the fluids to drip in through the port.
Once results come back from the lab and the oncologist gives the okay, the speciality pharmacy will mix the drug. Doug will be monitored carefully in case he has a reaction to the drug. After the infusion he won't be allowed to leave until the nurse/doc are sure he isn't having a late reaction. Over time everything will probably go more quickly.
When Doug had his echo, I was not allowed to go into the hospital. I had to wait in the car; this is due to the Covid-19 precautions. I understand completely.
We checked, and I will be allowed to stay with Doug in the infusion clinic, as long as I do not leave and come back. I will have my iPad to keep me busy.
Doug will have Kyprolis every Thursday and Friday. Thankfully it only takes 30 minutes travel time to get to the hospital.
We are trying not to focus on the cancer treatment. It takes a lot of prayer to keep our eyes on Jesus!
This is one of the Bible verses that helps me:
"I know the Lord is always with me. I will not be shaken, for He is right beside me." Psalm 16:8
Love to all.
Friday, April 24, 2020
Thursday, April 16, 2020
Stop Dara/Pom
Back in July Dr. Matous, the Denver specialist, said that if Doug's Lambda light chains get to 300mg/L he will change treatment. They have been slowly rising since then but the latest myeloma panel showed a big jump from 171 to 290. Dr. A, the oncologist at our local hospital has talked to Dr. M and they agree that Doug should stop the daratumumab/pomalyst/dex combo.
The infusion that was scheduled for today was cancelled.
Dr. Matous has told us in the past that if the dara/pom fails, he would go to Kyprolis and dexamethasone. Kyprolis, also known as carfilzomib, is a proteasome inhibitor. It's been around for a few years. It is administered as an infusion. It has a long list of possible side effects, including heart complications. Doug had heart failure (temporary) when he had his stem cell transplant in 2009, but his heart recovered very well. But since he has a history, he has to have an echocardiogram done before he can start Kyprolis. Dr A called and told us that. We are waiting to get that scheduled.
We got a call from Denver today telling us that Doug will have a video call March 27 with Dr. Matous.
This is not good news, but it is not a surprise to us. It is part of the roller coaster that is living with Multiple Myeloma. We spend a lot of time waiting for the other shoe to drop but we do not focus on that. One day at a time.
That's all we know for now.
Here is a quote from Jesus Calling, one of my favorite devotionals.
"I am training you in steadiness. Too many things interrupt your awareness of Me. I know that you live in a world of sight and sound, but you must not be a slave to those stimuli. Awareness of Me can continue in all circumstances, no matter what happens. This is the steadiness I desire for you.
Don't let unexpected events throw you off course. Rather, respond calmly and confidently, remembering that I am with you. As soon as something grabs your attention, talk with Me about it. This is how I live in you and work through you. This is the way of Peace.
Love to all.
The infusion that was scheduled for today was cancelled.
Dr. Matous has told us in the past that if the dara/pom fails, he would go to Kyprolis and dexamethasone. Kyprolis, also known as carfilzomib, is a proteasome inhibitor. It's been around for a few years. It is administered as an infusion. It has a long list of possible side effects, including heart complications. Doug had heart failure (temporary) when he had his stem cell transplant in 2009, but his heart recovered very well. But since he has a history, he has to have an echocardiogram done before he can start Kyprolis. Dr A called and told us that. We are waiting to get that scheduled.
We got a call from Denver today telling us that Doug will have a video call March 27 with Dr. Matous.
This is not good news, but it is not a surprise to us. It is part of the roller coaster that is living with Multiple Myeloma. We spend a lot of time waiting for the other shoe to drop but we do not focus on that. One day at a time.
That's all we know for now.
Here is a quote from Jesus Calling, one of my favorite devotionals.
"I am training you in steadiness. Too many things interrupt your awareness of Me. I know that you live in a world of sight and sound, but you must not be a slave to those stimuli. Awareness of Me can continue in all circumstances, no matter what happens. This is the steadiness I desire for you.
Don't let unexpected events throw you off course. Rather, respond calmly and confidently, remembering that I am with you. As soon as something grabs your attention, talk with Me about it. This is how I live in you and work through you. This is the way of Peace.
Love to all.
Friday, April 3, 2020
Hanging in there
Doug had his infusion yesterday. This time the 'gatekeeper' nurse was just inside the entrance; two weeks ago she was outside. This time in addition to just asking us questions, she took temperatures. A good idea. Then she gave us a sticker to wear while in the building. And told us to use the hand sanitizer.
Doug weighed 158, down two pounds but a decent weight. His labs were good:
ANC was 2.2 Last time it was .9 so that's a big improvement.
WBC 3.8
HGB 13.0
PLT 216
His nurse drew blood for the myeloma panel that checks his cancer markers. We should get that result in a week or so.
The infusion clinic sure looks different with all the curtains pulled closed. We used to be able to talk with other patients, although at a distance. Now we can't even wave hello. The nurses are still their usual calm, comforting, cheerful, capable selves.
I was talking with Doug's nurse about the public wearing masks and I said I was going to start that when in the grocery store. She gave me a mask - one of the volunteers had made and donated a pile. Of course they are not medical grade but I think it's a good idea for these reasons:
It keeps people aware to keep away. If it makes me look sick maybe they will stand farther away!
It reminds me not to touch my face when out.
It might be some protection to others if I cough or sneeze. Although I will still sneeze into my elbow.
The downside to wearing a mask - it might give people a false sense of protection.
Our Colorado governor just put out a message asking the public to wear face coverings in public. Good move!
Our church is doing a good job of keeping us connected while we can't physically go to church.
On Sundays the service is live streamed on YouTube. Last week our pastor said he wasn't preaching to an empty church. The camera panned around the seating - there were big cardboard cutouts of famous people and cartoon people in the seats. Funny! And now we are getting daily devotionals from our pastors emailed out. We know we can call the church if we need anything.
If anyone wants to check YouTube, search for Clearview Community Church.
Verse of the day:
"May the Lord lead your hearts into a full understanding and expression of the love of God and the patient endurance that comes from Christ." 2Thessalonians 3:5
Love to all.
Doug weighed 158, down two pounds but a decent weight. His labs were good:
ANC was 2.2 Last time it was .9 so that's a big improvement.
WBC 3.8
HGB 13.0
PLT 216
His nurse drew blood for the myeloma panel that checks his cancer markers. We should get that result in a week or so.
The infusion clinic sure looks different with all the curtains pulled closed. We used to be able to talk with other patients, although at a distance. Now we can't even wave hello. The nurses are still their usual calm, comforting, cheerful, capable selves.
I was talking with Doug's nurse about the public wearing masks and I said I was going to start that when in the grocery store. She gave me a mask - one of the volunteers had made and donated a pile. Of course they are not medical grade but I think it's a good idea for these reasons:
It keeps people aware to keep away. If it makes me look sick maybe they will stand farther away!
It reminds me not to touch my face when out.
It might be some protection to others if I cough or sneeze. Although I will still sneeze into my elbow.
The downside to wearing a mask - it might give people a false sense of protection.
Our Colorado governor just put out a message asking the public to wear face coverings in public. Good move!
Our church is doing a good job of keeping us connected while we can't physically go to church.
On Sundays the service is live streamed on YouTube. Last week our pastor said he wasn't preaching to an empty church. The camera panned around the seating - there were big cardboard cutouts of famous people and cartoon people in the seats. Funny! And now we are getting daily devotionals from our pastors emailed out. We know we can call the church if we need anything.
If anyone wants to check YouTube, search for Clearview Community Church.
Verse of the day:
"May the Lord lead your hearts into a full understanding and expression of the love of God and the patient endurance that comes from Christ." 2Thessalonians 3:5
Love to all.
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