The biopsy of the lump on Doug's right anterior chest wall (near the port) was done 5-15-20.
On 5-20-20 we got the pathology report from HRRMC. It said: "Favor soft tissue involvement by plasmacytoma, versus large B-cell lymphoma. Mayo pathology consult pending." We were surprised to read that! Based on appearance and Doug's history of plasmacytomas, we, including the oncologist, were sure it is a plasmacytoma. We still do not have the final report from Mayo. The NP at the infusion clinic says it would be "very unlikely" to be lymphoma. We want to see that report!
When Doug first started the Kyprolis, Cycle 1, day 1 & 2, the protocol called for a reduced dose of 40 mg.
The next week, days 8 & 9, per protocol the dose was increased to 100 mg.
Then Doug had the weight gain and edema of his legs ankles and feet. So the following week, days 15 & 16, the oncologist reduced the dose back down to 40mg out of caution.
The next week was his rest week - no chemo - and he felt better with more energy. Both the Denver specialist and the local oncologist agreed that we need to get the dose back up.
So yesterday and today, cycle 2, days 1 & 2, the dose went up to 60 mg. We are watching closely for edema and weight gain. We'd like, if possible, to go up to 100 mg which is what it should be per protocol. But only if he can tolerate that dose.
Yesterday the nurse could not get the port to draw - meaning blood would not come out, but sterile saline would go in. That happens occasionally, and usually changing position, raising the arm, laying him way back in the chair, or other movement, will do it. Not this time. So Doug had to go to radiology for a 'dye study'. That showed the dye going into the port and going where it should go in the body. Good! Sometimes a small clot or fibrin sheath will form at the end of the catheter tip and act kind of like a one-way valve. The dye study showed it was safe to use the port for the chemo. We were glad of that. After yesterday's chemo was finished, the nurse injected a tiny bit of a drug (cathflow) that acts as a 'clot buster'. This morning it was sucked out, then the port was flushed and it it like new.
Yesterday Doug weighed 162, this morning 164. We will keep checking it as well as watching out for increased edema.
We both enjoyed Doug's week off treatment. He was able to walk around the loop with me and the dogs, and drive our new car that has all the new safety features.
We are depending on God for endurance, strength and peace. We appreciate all of you who pray for us!
This is one of my go-to Bible verses:
"Do not be afraid, for I am with you.
Do not be discouraged, for I am your God.
I will help you and strengthen you.
I will hold you up with my victorious right hand."
Isaiah 41:10
Friday, May 29, 2020
Friday, May 15, 2020
Plasmacytoma?
This morning as we were getting ready to leave for infusion, Doug noticed a bump just above his port. (On his chest). It was small, but it wasn't there yesterday. We told the nurse, who told the oncologist - and she came to see it; thought it looked suspicious. The oncologist called a surgeon who has her office just down the hall from oncology. The surgeon said she'd like to biopsy it. Luckily she had a spot open after Doug finished his Kyprolis infusion.
I was allowed to be in the room (in the surgeon's office) while she did an ultrasound and then biopsied the lump. When she got tissue out, she said it looks like a plasmacytoma to her. Of course it will take a few days to get the pathology report back because it will be sent out for an outside opinion.
In December of 2018 Doug had several plasmacytomas and needed three weeks of radiation in Edwards CO.
A plasmacytoma is a group of myeloma cancer cells that grow outside the usual area. Multiple Myeloma is a cancer of the plasma cells of the blood. The myeloma lives in the bone marrow and thus in the bones. Extramedullary plasmacytoma consists of cells that are aggressive and migrate to soft tissue. This is not a good thing. To have it happen while on a new drug is also not a good sign.
We are thankful it was caught early and biopsied early. We hope Doug will not need radiation, but if he does, at least it is not winter like last time when we had to drive back and forth on wintry roads.
I like those WWII signs that say "Keep Calm and Carry On". That is what we will do.
Here is a quote I found that is appropriate:
"Father, I am here waiting for You. My heart and hands are open to Your purposes and plans for my life. Give me the patience I so desperately need and lead me in my waiting. Though my feelings may not be there just yet, I believe You are moving on my behalf right this minute, protecting, defending, preparing, providing. Give me grace to keep trusting in You in the face of the gale force winds of doubt that are blowing all around me. Anchor my heart in You. Amen" Louie Giglio
I was allowed to be in the room (in the surgeon's office) while she did an ultrasound and then biopsied the lump. When she got tissue out, she said it looks like a plasmacytoma to her. Of course it will take a few days to get the pathology report back because it will be sent out for an outside opinion.
In December of 2018 Doug had several plasmacytomas and needed three weeks of radiation in Edwards CO.
A plasmacytoma is a group of myeloma cancer cells that grow outside the usual area. Multiple Myeloma is a cancer of the plasma cells of the blood. The myeloma lives in the bone marrow and thus in the bones. Extramedullary plasmacytoma consists of cells that are aggressive and migrate to soft tissue. This is not a good thing. To have it happen while on a new drug is also not a good sign.
We are thankful it was caught early and biopsied early. We hope Doug will not need radiation, but if he does, at least it is not winter like last time when we had to drive back and forth on wintry roads.
I like those WWII signs that say "Keep Calm and Carry On". That is what we will do.
Here is a quote I found that is appropriate:
"Father, I am here waiting for You. My heart and hands are open to Your purposes and plans for my life. Give me the patience I so desperately need and lead me in my waiting. Though my feelings may not be there just yet, I believe You are moving on my behalf right this minute, protecting, defending, preparing, providing. Give me grace to keep trusting in You in the face of the gale force winds of doubt that are blowing all around me. Anchor my heart in You. Amen" Louie Giglio
Thursday, May 14, 2020
Peripheral edema - Kyprolis cycle 1
On May 7 Doug had his first full strength dose of Kyprolis. His weight was good at 160.
All his lab work came back okay:
WBC 7.6
HGB 12.4
PLT 209
ANC 7.1
Creatinine 1.1
Sodium 136
The NP (nurse practitioner) came to see how he was doing. He told her 'no problems'.
The next day, Friday 5-8-20, he weighed in at 162. No big deal.
He had a full strength dose of Kyprolis with the usual fluids.
On Thursdays the lab work is done; on Fridays lab work is not done.
Friday evening at home, we noticed his leg swelling was a little worse than usual. We checked his weight - it was 165. Up 3 pounds since morning. He felt fine.
Saturday his weight was 166.2. His feet ankles and lower legs on both sides were puffy. He still felt fine, no other problems except fatigue. (For the medical folks - I checked and it was not pitting edema.)
Sunday his weight started to go down - 165.1
Monday he weighed 162.4 and the edema was quite a bit less.
Tuesday's weight was 161. Just the 'normal' swelling on left side.
I called to report all this so the doc would have a heads-up before Doug went to infusion today, May 14.
Today Doug weighed 159, a good number for him. BP was 114/71.
His lab work was:
WBC 9.0
HGB 12.3
ANC 8.3
PLT 107
Creatinine 1.3
BUN 32
Sodium 134
Dr. A came to see Doug. Peripheral edema is one of the possible side effects of Kyprolis. But she was a little surprised the edema came back down so quickly. She made a phone call to Dr. Matous in Denver to get his opinion. Meanwhile she ordered an EKG to be done before infusion. That didn't show much. His heart sounded okay to her.
Dr. A told us she thought the Kyprolis dose needed to be lowered back down to the starting dose on days 1 and 2, which was 20 mg (calculated by a formula for his weight). Dr. Matous called her back and he agreed with Dr. A to go ahead with the lower dose and also cut his saline fluids in half for now.
He tolerated the infusion well, no drama.
Doug will go back tomorrow, Friday, and then he will be off for one week. Three weeks on, one week off.
When Doug resumes treatment on May 28, that will be the start of cycle 2. Dr. Matous wants Doug to get an intermediate Kyprolis dose; higher than he got today. He says if we have to keep the Kyprolis dose at the very low level, then he would probably need to add another drug to the mix. And he really would prefer not to do that.
We will continue to monitor Doug's weight and leg/feet swelling. Dr A says to call her on her cell phone if he has any more edema/weight gain.
Doug is also supposed to have another echocardiogram before cycle 2, to be compared with the baseline one he had before Kyprolis started.
We are aware there could be complications ahead, but we try not to focus on that.
Love to all.
Today's verse:
"God is your refuge, and his everlasting arms are under you."
Deuteronomy 33:27
All his lab work came back okay:
WBC 7.6
HGB 12.4
PLT 209
ANC 7.1
Creatinine 1.1
Sodium 136
The NP (nurse practitioner) came to see how he was doing. He told her 'no problems'.
The next day, Friday 5-8-20, he weighed in at 162. No big deal.
He had a full strength dose of Kyprolis with the usual fluids.
On Thursdays the lab work is done; on Fridays lab work is not done.
Friday evening at home, we noticed his leg swelling was a little worse than usual. We checked his weight - it was 165. Up 3 pounds since morning. He felt fine.
Saturday his weight was 166.2. His feet ankles and lower legs on both sides were puffy. He still felt fine, no other problems except fatigue. (For the medical folks - I checked and it was not pitting edema.)
Sunday his weight started to go down - 165.1
Monday he weighed 162.4 and the edema was quite a bit less.
Tuesday's weight was 161. Just the 'normal' swelling on left side.
I called to report all this so the doc would have a heads-up before Doug went to infusion today, May 14.
Today Doug weighed 159, a good number for him. BP was 114/71.
His lab work was:
WBC 9.0
HGB 12.3
ANC 8.3
PLT 107
Creatinine 1.3
BUN 32
Sodium 134
Dr. A came to see Doug. Peripheral edema is one of the possible side effects of Kyprolis. But she was a little surprised the edema came back down so quickly. She made a phone call to Dr. Matous in Denver to get his opinion. Meanwhile she ordered an EKG to be done before infusion. That didn't show much. His heart sounded okay to her.
Dr. A told us she thought the Kyprolis dose needed to be lowered back down to the starting dose on days 1 and 2, which was 20 mg (calculated by a formula for his weight). Dr. Matous called her back and he agreed with Dr. A to go ahead with the lower dose and also cut his saline fluids in half for now.
He tolerated the infusion well, no drama.
Doug will go back tomorrow, Friday, and then he will be off for one week. Three weeks on, one week off.
When Doug resumes treatment on May 28, that will be the start of cycle 2. Dr. Matous wants Doug to get an intermediate Kyprolis dose; higher than he got today. He says if we have to keep the Kyprolis dose at the very low level, then he would probably need to add another drug to the mix. And he really would prefer not to do that.
We will continue to monitor Doug's weight and leg/feet swelling. Dr A says to call her on her cell phone if he has any more edema/weight gain.
Doug is also supposed to have another echocardiogram before cycle 2, to be compared with the baseline one he had before Kyprolis started.
We are aware there could be complications ahead, but we try not to focus on that.
Love to all.
Today's verse:
"God is your refuge, and his everlasting arms are under you."
Deuteronomy 33:27
Saturday, May 2, 2020
Kyprolis - 1st and 2nd infusions
Last Thursday April 30 Doug had his first Kyprolis infusion.
Cycle 1, day 1. Each cycle is 28 days.
He weighed 160 - very good. BP was 108/69.
After the nurse accessed his port, she drew blood to send to the lab. While we were waiting for results, she started 500 ml of sterile saline; this hydration will be given before each infusion, to help protect organs.
Doug still has to take 20 mg dexamethasone with every Kyprolis infusion.
The parameters to 'qualify' for Kyprolis infusion are a little different than for the daratumumab.
This is for the medical nerds out there:
ANC needs to be greater than 1500
HGB greater than 8.5
PLT greater than 100
Total bilirubin less than 1.2
No signs or symptoms of any herpes or varicella virus infection
Serum glucose less than 200
BP less than 150/90
No signs or symptoms of cardiac dysfunction
No signs or symptoms of pulmonary toxicity
If any of these are not within limits, the oncologist will withhold treatment or adjust medications. Or in some cases adjust the parameters.
Doug had no reactions to the infusion. Yay! Some of the possible side effects will show up only over time.
All his blood work was good, except sodium was a little low. Nurse said eat more salt - I was surprised by that.
Here are the counts for day 1:
WBC 6.7
HGB 12.4
PLT 330
ANC 5.4
GLU 122
CREAT 1.1
Magnesium 2.0
Sodium 134
The oncology pharmacist came down to go over the drugs with Doug. She looks much too young to have a doctorate in pharmacology! She's cute and she and Doug have a nice relationship developing. I can't stress enough how much we enjoy all the professionals in the infusion clinic.
It feels good to have the first two Kyprolis infusions over with. Doug is doing well. In the late afternoon, after we were home for a couple hours, the nurse called to make sure Doug was doing okay. An hour later the pharmacist called too!
Doug has slight nausea and of course the ever-present fatigue.
Friday, day 2, no blood work was needed. Doug just had the fluids and then Kyprolis. Kyprolis infusion is only 30 minutes. Much faster than the dara was.
The Kyprolis dose was reduced for the first two days. Next week it will be higher.
Thank you to all the people who are holding us up in prayer!
Love to all.
Cycle 1, day 1. Each cycle is 28 days.
He weighed 160 - very good. BP was 108/69.
After the nurse accessed his port, she drew blood to send to the lab. While we were waiting for results, she started 500 ml of sterile saline; this hydration will be given before each infusion, to help protect organs.
Doug still has to take 20 mg dexamethasone with every Kyprolis infusion.
The parameters to 'qualify' for Kyprolis infusion are a little different than for the daratumumab.
This is for the medical nerds out there:
ANC needs to be greater than 1500
HGB greater than 8.5
PLT greater than 100
Total bilirubin less than 1.2
No signs or symptoms of any herpes or varicella virus infection
Serum glucose less than 200
BP less than 150/90
No signs or symptoms of cardiac dysfunction
No signs or symptoms of pulmonary toxicity
If any of these are not within limits, the oncologist will withhold treatment or adjust medications. Or in some cases adjust the parameters.
Doug had no reactions to the infusion. Yay! Some of the possible side effects will show up only over time.
All his blood work was good, except sodium was a little low. Nurse said eat more salt - I was surprised by that.
Here are the counts for day 1:
WBC 6.7
HGB 12.4
PLT 330
ANC 5.4
GLU 122
CREAT 1.1
Magnesium 2.0
Sodium 134
The oncology pharmacist came down to go over the drugs with Doug. She looks much too young to have a doctorate in pharmacology! She's cute and she and Doug have a nice relationship developing. I can't stress enough how much we enjoy all the professionals in the infusion clinic.
It feels good to have the first two Kyprolis infusions over with. Doug is doing well. In the late afternoon, after we were home for a couple hours, the nurse called to make sure Doug was doing okay. An hour later the pharmacist called too!
Doug has slight nausea and of course the ever-present fatigue.
Friday, day 2, no blood work was needed. Doug just had the fluids and then Kyprolis. Kyprolis infusion is only 30 minutes. Much faster than the dara was.
The Kyprolis dose was reduced for the first two days. Next week it will be higher.
Thank you to all the people who are holding us up in prayer!
Love to all.
Friday, April 24, 2020
Kyprolis will start soon
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.
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.
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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