Infusion #8 went well today. This is the last of the weekly infusion of dara. The next one is in two weeks.
Doug lost another pound - he weighed 152 today. He was dehydrated, I wonder if that could account for the weight loss? He got an extra bag of fluids. The nurse looks at his tongue to tell if he is dehydrated. He is eating fairly well - now we have to concentrate on drinking more.
Last week Doug's platelet count was low at 103. Today it was 142 - much better!
Yesterday Doug got the new Shingrex shingles vaccine, on the recommendation of the Denver specialist. There has been a shortage and many people are waiting. The pharmacist said he would move Doug to the top of the list due to his immune compromised status. That's good small town service!
Doug did not feel like driving today. His eyesight, although much improved with new glasses in combination with scleral lenses, is really not great. He says he will drive in town but not on the highway. That's okay.
That's all folks. Love to all!
Thursday, March 28, 2019
Wednesday, March 27, 2019
Denver Myeloma Specialist
Yesterday we went to Denver to see Dr. Jeff Matous, the myeloma specialist who supervised Doug's stem cell transplant in 2009. Doug has been with him ever since.
We last saw him November 28, when he found the plasmacytoma on Doug's arm and ordered radiation. Doug's infusions are under Dr. Oatis in Salida, our regional hospital, but Dr. Matous oversees everything and works with Dr. Oatis to make decisions. We are fortunate that the two doctors work well together.
We think the world of Dr. Matous; he specializes in multiple myeloma and is brilliant. He is also very caring and sees his patients as individuals. He always asks what Doug is up to - he encourages Doug to be as active as he can. He is very interested in quality of life, not just how long his patients live, but how well they live. Plus he has a sense of humor and is fun to talk to.
Since Doug started with Dr. Matous, his oncology practice has grown quite large. He now has two excellent nurse practitioners who work closely with him and they also see patients. So when we get to see Matous himself it is a real treat.
Dr. Matous said Doug's fatigue is most likely from the Revlimid. We have been blaming the daratumumab. Matous said that if Doug remains so fatigued, he would consider lowering the Revlimid dose again. But we have to wait and see how it goes when the dara infusions go to every other week. Tomorrow is the last of the every week infusions.
Even when the dara is only every other week, the Revlimid stays at three out of four weeks, and the dex (steroid) stays weekly. The Revlimid and dex are oral drugs, so he takes them at home.
Dr. Matous is pleased with Doug's response to the treatment. That is very encouraging!
Matous said to watch out for any more plasmacytomas (soft tissue tumors); they can happen even under treatment, although it is rare.
I drove both ways to Denver, without problems. Doug is not confident enough of his eye sight yet to drive far. It was a beautiful day. We go the extra long way. I won't drive on I-70. We allow three hours each way. Denver traffic is always busy so we allow a cushion of time.
Our little dogs had a play date at a good friend's house while we were gone. That means a lot to us.
So it was a good day all around. Tiring, but good.
Love to all.
Today's verse:
I will sing aloud of your steadfast love in the morning. For you have been to me a fortress and a refuge in the day of my distress. O my strength, I will sing praises to you, for you, O God, are my fortress, the God who shows me steadfast love. Psalm 59: 16-17
We last saw him November 28, when he found the plasmacytoma on Doug's arm and ordered radiation. Doug's infusions are under Dr. Oatis in Salida, our regional hospital, but Dr. Matous oversees everything and works with Dr. Oatis to make decisions. We are fortunate that the two doctors work well together.
We think the world of Dr. Matous; he specializes in multiple myeloma and is brilliant. He is also very caring and sees his patients as individuals. He always asks what Doug is up to - he encourages Doug to be as active as he can. He is very interested in quality of life, not just how long his patients live, but how well they live. Plus he has a sense of humor and is fun to talk to.
Since Doug started with Dr. Matous, his oncology practice has grown quite large. He now has two excellent nurse practitioners who work closely with him and they also see patients. So when we get to see Matous himself it is a real treat.
Dr. Matous said Doug's fatigue is most likely from the Revlimid. We have been blaming the daratumumab. Matous said that if Doug remains so fatigued, he would consider lowering the Revlimid dose again. But we have to wait and see how it goes when the dara infusions go to every other week. Tomorrow is the last of the every week infusions.
Even when the dara is only every other week, the Revlimid stays at three out of four weeks, and the dex (steroid) stays weekly. The Revlimid and dex are oral drugs, so he takes them at home.
Dr. Matous is pleased with Doug's response to the treatment. That is very encouraging!
Matous said to watch out for any more plasmacytomas (soft tissue tumors); they can happen even under treatment, although it is rare.
I drove both ways to Denver, without problems. Doug is not confident enough of his eye sight yet to drive far. It was a beautiful day. We go the extra long way. I won't drive on I-70. We allow three hours each way. Denver traffic is always busy so we allow a cushion of time.
Our little dogs had a play date at a good friend's house while we were gone. That means a lot to us.
So it was a good day all around. Tiring, but good.
Love to all.
Today's verse:
I will sing aloud of your steadfast love in the morning. For you have been to me a fortress and a refuge in the day of my distress. O my strength, I will sing praises to you, for you, O God, are my fortress, the God who shows me steadfast love. Psalm 59: 16-17
Thursday, March 21, 2019
Infusion # 7
Infusion # 7 today. It went well. Doug's weight is steady at 153, same as the last two weeks.
Doug's white blood counts were down compared to last week, but good enough to get the treatment. One month ago, when Doug's counts were too low to have an infusion, his WBC was 2.0 and the absolute neutrophil count (ANC) was .9. Today the WBC was 2.5 and the ANC was 1.2. Once those numbers were approved by the Dr, the nurse called pharmacy and ordered the dara; they do not mix it up ahead of time.
There was a delay in getting the drug from pharmacy today because a code blue was called and pharmacy has to drop everything and respond.
It was the scheduled Dr visit today; she was busy so we saw the nurse practitioner. Nothing much to report except that Doug's athlete's foot infection is not cleared up yet. It came on with a vengeance when Doug was neutropenic - he didn't have enough infection fighting cells. We have seen the foot Dr twice; he says it will take a lot longer to clear up while Doug's immunity is low. Doug can't see his feet well enough to make sure all the areas are covered with the cream, so I've been putting it on for him. Service with a smile!
Everything moved a little slow today. Doug's usual nurse had the day off and we had a nurse who was new to us. She did fine, just not as quick. We appreciate her taking time to double check everything.
The hospital lost the water supply for a time. No water came out of the faucets and none of the toilets flushed! This was probably related to the construction taking place. The hospital is expanding and it is a huge project. After an hour, the plumbing was working as usual and the water was deemed safe.
The infusion was finished at 3:30. we were both tired and ready to get home. But we are thankful we were only 30 minutes from home and not in Denver! We are blessed.
Love to all.
Doug's white blood counts were down compared to last week, but good enough to get the treatment. One month ago, when Doug's counts were too low to have an infusion, his WBC was 2.0 and the absolute neutrophil count (ANC) was .9. Today the WBC was 2.5 and the ANC was 1.2. Once those numbers were approved by the Dr, the nurse called pharmacy and ordered the dara; they do not mix it up ahead of time.
There was a delay in getting the drug from pharmacy today because a code blue was called and pharmacy has to drop everything and respond.
It was the scheduled Dr visit today; she was busy so we saw the nurse practitioner. Nothing much to report except that Doug's athlete's foot infection is not cleared up yet. It came on with a vengeance when Doug was neutropenic - he didn't have enough infection fighting cells. We have seen the foot Dr twice; he says it will take a lot longer to clear up while Doug's immunity is low. Doug can't see his feet well enough to make sure all the areas are covered with the cream, so I've been putting it on for him. Service with a smile!
Everything moved a little slow today. Doug's usual nurse had the day off and we had a nurse who was new to us. She did fine, just not as quick. We appreciate her taking time to double check everything.
The hospital lost the water supply for a time. No water came out of the faucets and none of the toilets flushed! This was probably related to the construction taking place. The hospital is expanding and it is a huge project. After an hour, the plumbing was working as usual and the water was deemed safe.
The infusion was finished at 3:30. we were both tired and ready to get home. But we are thankful we were only 30 minutes from home and not in Denver! We are blessed.
Love to all.
Friday, March 15, 2019
No weight loss!
Yesterday was cycle 2, day 15, also known as infusion #6. Two more weekly infusions, then it goes to every other week.
Doug's white blood count was a little low but within limits to proceed. His platelet count was 90 which is the lowest it's been. Normal is 130 to 400. I asked the nurse how low the platelets could go before it warranted action. She said if they fall to 20, a platelet infusion would be needed, but she doesn't expect them to get that low. So for now, nothing to be too concerned about - just more bruising.
Doug's weight was the same as last week, 153. I'm very happy that he didn't lose more weight. He's really trying to eat. He got an extra bag of fluids yesterday, since he was a little dehydrated.
Today was dexamethasone day (we call it dex day); the day after each infusion he takes 20 mg of dex. It's a type of corticosteroid. It energizes Doug for a while. Today he ran errands with me - he sat in the car mostly. But he wanted to get more walking in, so we went to the Tractor Supply Store, which is not ever crowded, and walked around. They had the baby chicks in heated pens - so cute! And they were giving away baby ducks free to good homes. I was tempted for about 1/16 second.
The infusion was finished at 2:00 - five hours in clinic. Not bad!
Praise God for an uneventful day.
Love to all.
Today's verse:
Search for the Lord and for his strength; continually seek him. Psalm 105:4
Doug's white blood count was a little low but within limits to proceed. His platelet count was 90 which is the lowest it's been. Normal is 130 to 400. I asked the nurse how low the platelets could go before it warranted action. She said if they fall to 20, a platelet infusion would be needed, but she doesn't expect them to get that low. So for now, nothing to be too concerned about - just more bruising.
Doug's weight was the same as last week, 153. I'm very happy that he didn't lose more weight. He's really trying to eat. He got an extra bag of fluids yesterday, since he was a little dehydrated.
Today was dexamethasone day (we call it dex day); the day after each infusion he takes 20 mg of dex. It's a type of corticosteroid. It energizes Doug for a while. Today he ran errands with me - he sat in the car mostly. But he wanted to get more walking in, so we went to the Tractor Supply Store, which is not ever crowded, and walked around. They had the baby chicks in heated pens - so cute! And they were giving away baby ducks free to good homes. I was tempted for about 1/16 second.
The infusion was finished at 2:00 - five hours in clinic. Not bad!
Praise God for an uneventful day.
Love to all.
Today's verse:
Search for the Lord and for his strength; continually seek him. Psalm 105:4
Friday, March 8, 2019
Better Vision
Doug got his new bifocal glasses; he has to wear them in addition to the scleral lenses. Now he can see much better and reading is much easier. Praise God! He hasn't tried driving yet but should be able to when he feels like it.
Yesterday was day 1 of Cycle 2. That means there are three more weekly infusions - then it goes to every other week. We are looking forward to that. The fatigue seems about the same; no energy.
Doug has lost 8 pounds since starting the infusions. He doesn't have much appetite but he is eating. Things are going as well as possible right now.
Love to all.
Verse for the day:
May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ. 2 Thessalonians 3:5
Yesterday was day 1 of Cycle 2. That means there are three more weekly infusions - then it goes to every other week. We are looking forward to that. The fatigue seems about the same; no energy.
Doug has lost 8 pounds since starting the infusions. He doesn't have much appetite but he is eating. Things are going as well as possible right now.
Love to all.
Verse for the day:
May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ. 2 Thessalonians 3:5
Friday, March 1, 2019
Blood counts have rebounded!
Good news - Doug's blood counts have rebounded nicely with a week off the chemo drugs! So he was able to get his infusion yesterday. The Revlimid dose will be 15 mg instead of 25 from now on, so hopefully he will be able to tolerate the chemo better.
His ANC went from .9 last week to 2.2 - much much better. We are very thankful and praising God.
He walked a block outside today - go Dougie!
We spent five hours in the infusion clinic today - not bad. Three hours of actual dara infusion and two of all the prep stuff.
Doug will be getting new bifocal glasses in about two weeks. With the combination of the scleral contacts and new bifocals, he will be able to see not only far but up close. Yay!
Love to all.
Today's verse:
May the Lord bless you and protect you.
May the Lord smile on you and be gracious to you.
May the Lord show you his favor and give you his peace.
Numbers 6:24-27
His ANC went from .9 last week to 2.2 - much much better. We are very thankful and praising God.
He walked a block outside today - go Dougie!
We spent five hours in the infusion clinic today - not bad. Three hours of actual dara infusion and two of all the prep stuff.
Doug will be getting new bifocal glasses in about two weeks. With the combination of the scleral contacts and new bifocals, he will be able to see not only far but up close. Yay!
Love to all.
Today's verse:
May the Lord bless you and protect you.
May the Lord smile on you and be gracious to you.
May the Lord show you his favor and give you his peace.
Numbers 6:24-27
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