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.
Thursday, March 19, 2020
Infusion, Covid-19 precautions
Doug had his infusion today. The hospital is taking precautions because of the Covid-19.
Only two entrances are open. A nurse was at each door, asking everyone if we were feeling well, and did we have a fever recently. I was surprised she did not take anyone's temperature. We were told to use the hand sanitizer once inside the door. Only one person (family/caregiver) per patient could come in the building.
In the infusion clinic, all the nurses were wearing masks, and the curtains between chairs were drawn shut. It looked strange.
No one was being allowed into the cafeteria area. Meals for patients were ordered by phone and delivered to the clinic. Even employees (except for food service workers) could not enter the cafeteria area. Our nurse told us they gave their order and it was brought to the cashier area. All massages have been cancelled for the time being.
As a visitor I was not allowed out of the infusion clinic. I usually roam all over the hospital, to get some walking in, and I climb the stairs a lot. We were glad to see all these precautions being taken.
Our very kind nurse ordered me some iced tea when she called in Doug's breakfast order.
Doug's blood counts were qualifying:
ANC .9
WBC 2.6
HGB 12.9
PLT 148
The doctors have changed the minimum qualifying number for the ANC (absolute neutrophil count) from 1.0 to .5 This is so he won't miss infusions unless it is really really low.
He weighed 160, same as two weeks ago. Very good!
We were very glad to see the PA today. She has been out with a rare kind of abdominal cancer and had radical surgery. She now has two ostomies and is back part time. She looks wonderful and has a great attitude. She is a ray of sunshine!
We got some much needed snow this morning - about 4 or 5 inches. Driving was slow but not bad.
The Covid-19 threatens to grab our attention incessantly to the news feeds. We do keep up to date on the ever-changing guidelines and we are staying home. But we don't want to put our focus there too much. I find myself grateful for the basics today.
Verse of the day:
He will shield you with His wings.
He will shelter you with His feathers.
His faithful promises are your armor and protection.
Psalm 91:4
Only two entrances are open. A nurse was at each door, asking everyone if we were feeling well, and did we have a fever recently. I was surprised she did not take anyone's temperature. We were told to use the hand sanitizer once inside the door. Only one person (family/caregiver) per patient could come in the building.
In the infusion clinic, all the nurses were wearing masks, and the curtains between chairs were drawn shut. It looked strange.
No one was being allowed into the cafeteria area. Meals for patients were ordered by phone and delivered to the clinic. Even employees (except for food service workers) could not enter the cafeteria area. Our nurse told us they gave their order and it was brought to the cashier area. All massages have been cancelled for the time being.
As a visitor I was not allowed out of the infusion clinic. I usually roam all over the hospital, to get some walking in, and I climb the stairs a lot. We were glad to see all these precautions being taken.
Our very kind nurse ordered me some iced tea when she called in Doug's breakfast order.
Doug's blood counts were qualifying:
ANC .9
WBC 2.6
HGB 12.9
PLT 148
The doctors have changed the minimum qualifying number for the ANC (absolute neutrophil count) from 1.0 to .5 This is so he won't miss infusions unless it is really really low.
He weighed 160, same as two weeks ago. Very good!
We were very glad to see the PA today. She has been out with a rare kind of abdominal cancer and had radical surgery. She now has two ostomies and is back part time. She looks wonderful and has a great attitude. She is a ray of sunshine!
We got some much needed snow this morning - about 4 or 5 inches. Driving was slow but not bad.
The Covid-19 threatens to grab our attention incessantly to the news feeds. We do keep up to date on the ever-changing guidelines and we are staying home. But we don't want to put our focus there too much. I find myself grateful for the basics today.
Verse of the day:
He will shield you with His wings.
He will shelter you with His feathers.
His faithful promises are your armor and protection.
Psalm 91:4
Friday, March 13, 2020
Cancer marker jumps up
Doug had an infusion March 5, and a blood draw for a myeloma panel that is done once a month. We got that report back, and the Lambda light chains rose from 11.7 on Feb 6, to 17.1. That's a relatively big jump. The highest it's been in a year. But the pattern has been that the light chains go up and then back down again. The Denver specialist says he likes to see a "trend" which would be 3 months of a steady rise, before changing anything. So we will wait and see what the next two months bring.
Yesterday the hospital massage therapist gave Doug a 30 minute massage. This was not an infusion day. She focused on his left thigh - the area that lit up on the PET scan. We were curious to know if she could feel anything in the soft tissues. She said there was some muscle tightness, but nothing out of the ordinary.
Doug has been using the recumbent bike, and he is lifting light weights - only 3 pounds. We are focused on increasing repetitions, not increasing weight. I'm very glad that he is motivated to exercise.
Like most of our friends and neighbors, we are trying to stay calm about the Covid-19 situation. Doug is considered high risk; he has been on self-quarantine before the new virus, but he did go to church with me last Sunday. We sit so he is on the end of the row, not in a crowded area. Our church just sent out a notice that this Sunday church service is cancelled, so everyone should stay home, but there will be a service live-streamed. Probably for the best.
We continue to be thankful for our many blessings!
One of my favorite bible verses is Isaiah 41:10 -
"Do not be afraid, for I am with you. Do not be discouraged, for I am your God.
I will strengthen you and help you. I will hold you up with my victorious right hand."
Love to all.
Yesterday the hospital massage therapist gave Doug a 30 minute massage. This was not an infusion day. She focused on his left thigh - the area that lit up on the PET scan. We were curious to know if she could feel anything in the soft tissues. She said there was some muscle tightness, but nothing out of the ordinary.
Doug has been using the recumbent bike, and he is lifting light weights - only 3 pounds. We are focused on increasing repetitions, not increasing weight. I'm very glad that he is motivated to exercise.
Like most of our friends and neighbors, we are trying to stay calm about the Covid-19 situation. Doug is considered high risk; he has been on self-quarantine before the new virus, but he did go to church with me last Sunday. We sit so he is on the end of the row, not in a crowded area. Our church just sent out a notice that this Sunday church service is cancelled, so everyone should stay home, but there will be a service live-streamed. Probably for the best.
We continue to be thankful for our many blessings!
One of my favorite bible verses is Isaiah 41:10 -
"Do not be afraid, for I am with you. Do not be discouraged, for I am your God.
I will strengthen you and help you. I will hold you up with my victorious right hand."
Love to all.
Wednesday, February 19, 2020
PET/CT scan
Today Doug had a PET/CT whole body scan done at PLS in Denver. The scan was finished by 10:00 a.m. and we stayed around for Doug's appointment with Dr. Matous at 1:00. Hospital cafeteria food for lunch, yum. Actually it wasn't bad.
Dr. Matous is the oncologist who specializes in myeloma.
The previous PET scan was on 8-5-19. Usually there is a year between scans, but Dr. Matous said he wanted one now "because more information is better with you. Your myeloma throws curve balls."
Doug's light chains (cancer markers) have been zigzagging up and down over the last year, but there is a definite trend upward. Upward is bad. So Dr. M is keeping a close eye on Doug.
The scan report today showed no new bone lesions, but many old ones. No new bone lesions is good!
However, there is a puzzling thing: An area in Doug's left thigh 'lights up' on the scan. It was there on the previous scan but now the report says: "Worsening uptake in the proximal left quadriceps muscle." This is not in bone. It does not look like a plasmacytoma (soft tissue myeloma lump). Dr. M cannot feel it on exam and Doug does not have pain in the area. So both Dr. M and the radiologist are puzzled by it. Doug is supposed to let the docs know if he develops any sensation or problem in the left thigh.
He did tell Dr. Matous that his left upper leg has not had a good range of movement for several years. Doug has had radiation treatment in his left hip area but not down into the mid or lower thigh that lights up on the scan.
Dr Matous asked if Doug had noticed any changes in his overall well being. His weight has stabilized and was 157 today. Doug couldn't think of anything - but I said that I have noticed a gradual generalized weakness in him over the last few months.
Dr. M said that patients who have been on chemo long term do get weaker if they don't stay active. Dr. M told Doug the two top things he needs to do are:
1. Exercise - keep moving!
2. Keep his weight up.
Matous wants to see Doug in three months. Dr Arrambide in Salida will see Doug once a month.
Doug is to keep on the present treatment of Dara infusions every two weeks and Pom/dex by pill.
Dr. M reminded us that he does have a plan if Doug needs to change treatment any time soon. He has plans A, B, and C.
Today's drive was okay. We did have a little snow going home, and some blowing snow north of Fairplay, but not too bad. I could sense God's angels helping me drive.
Love to all.
Today's prayer is from Jesus Calling by Sarah Young:
"Come to Me with all your weaknesses: physical, emotional, and spiritual. Rest in the comfort of My Presence, remembering that nothing is impossible with Me.
Pry your mind away from your problems so you can focus your attention on Me. Recall that I am able to do immeasurably more than all you ask or imagine. Instead of trying to direct Me to do this and that, seek to attune yourself to what I am already doing.
When anxiety attempts to wedge its way into your thoughts, remind yourself that I am your Shepherd. The bottom line is that I am taking care of you; therefore, you needn't be afraid of anything."
Dr. Matous is the oncologist who specializes in myeloma.
The previous PET scan was on 8-5-19. Usually there is a year between scans, but Dr. Matous said he wanted one now "because more information is better with you. Your myeloma throws curve balls."
Doug's light chains (cancer markers) have been zigzagging up and down over the last year, but there is a definite trend upward. Upward is bad. So Dr. M is keeping a close eye on Doug.
The scan report today showed no new bone lesions, but many old ones. No new bone lesions is good!
However, there is a puzzling thing: An area in Doug's left thigh 'lights up' on the scan. It was there on the previous scan but now the report says: "Worsening uptake in the proximal left quadriceps muscle." This is not in bone. It does not look like a plasmacytoma (soft tissue myeloma lump). Dr. M cannot feel it on exam and Doug does not have pain in the area. So both Dr. M and the radiologist are puzzled by it. Doug is supposed to let the docs know if he develops any sensation or problem in the left thigh.
He did tell Dr. Matous that his left upper leg has not had a good range of movement for several years. Doug has had radiation treatment in his left hip area but not down into the mid or lower thigh that lights up on the scan.
Dr Matous asked if Doug had noticed any changes in his overall well being. His weight has stabilized and was 157 today. Doug couldn't think of anything - but I said that I have noticed a gradual generalized weakness in him over the last few months.
Dr. M said that patients who have been on chemo long term do get weaker if they don't stay active. Dr. M told Doug the two top things he needs to do are:
1. Exercise - keep moving!
2. Keep his weight up.
Matous wants to see Doug in three months. Dr Arrambide in Salida will see Doug once a month.
Doug is to keep on the present treatment of Dara infusions every two weeks and Pom/dex by pill.
Dr. M reminded us that he does have a plan if Doug needs to change treatment any time soon. He has plans A, B, and C.
Today's drive was okay. We did have a little snow going home, and some blowing snow north of Fairplay, but not too bad. I could sense God's angels helping me drive.
Love to all.
Today's prayer is from Jesus Calling by Sarah Young:
"Come to Me with all your weaknesses: physical, emotional, and spiritual. Rest in the comfort of My Presence, remembering that nothing is impossible with Me.
Pry your mind away from your problems so you can focus your attention on Me. Recall that I am able to do immeasurably more than all you ask or imagine. Instead of trying to direct Me to do this and that, seek to attune yourself to what I am already doing.
When anxiety attempts to wedge its way into your thoughts, remind yourself that I am your Shepherd. The bottom line is that I am taking care of you; therefore, you needn't be afraid of anything."
Friday, February 7, 2020
Infusion day, cough/cold
Doug has a cold with bad cough, but no fever. He saw our NP last week - She did the nasal swab test for flu and it was negative. She said that test is not always accurate. She thought his cough sounded like it could be low grade type B flu and prescribed Tamiflu just in case.
He did get his chemo infusion yesterday - his nurse put him in an isolation room for the sake of the other patients. He is wearing a mask when out of the house.
Doug qualified for chemo:
WBC 2.8
HGB 12.7
PLT 261
ANC 1.3
He is very tired and has been taking a long nap every day. He is taking Mucinex DM and Tessalon for the cough. We are very thankful that he is not running a fever!
We will be seeing Dr. M, the myeloma specialist in Denver February 19, after the PET/CT scan. It will be a long day. We have not decided if we will drive up and back the same day, or stay over. A lot depends on the weather.
Love to all.
The eternal God is your refuge, and his everlasting arms are under you.
Deuteronomy 33:27
He did get his chemo infusion yesterday - his nurse put him in an isolation room for the sake of the other patients. He is wearing a mask when out of the house.
Doug qualified for chemo:
WBC 2.8
HGB 12.7
PLT 261
ANC 1.3
He is very tired and has been taking a long nap every day. He is taking Mucinex DM and Tessalon for the cough. We are very thankful that he is not running a fever!
We will be seeing Dr. M, the myeloma specialist in Denver February 19, after the PET/CT scan. It will be a long day. We have not decided if we will drive up and back the same day, or stay over. A lot depends on the weather.
Love to all.
The eternal God is your refuge, and his everlasting arms are under you.
Deuteronomy 33:27
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