We have been waiting to get an appointment for radiation oncology. It seems to take forever when I want things to happen soon! Doug has been very calm; I have been very impatient. Waiting is hard!
We are to see the radiation oncology Dr. December 11. The next day Doug is scheduled for a planning CT for radiation and a PET/CT for restaging the cancer in preparation for the chemo. It is a huge relief to know we have a plan of action. Now I am calm too. The radiation treatments will be at the Shaw Cancer Center in Edwards - we will have to travel over Vail pass several times, which can be difficult and dangerous in winter weather. We have a lot of people praying for safe travel.
I am concerned that Doug's left leg/foot is more swollen. We bought him a pair of larger shoes today.
Today's verse:
Show me the right path, O Lord,
Point out the road for me to follow.
Lead me by your truth and teach me,
for you are the God who saves me.
All day long I put my hope in You.
Psalm 25:4-5
Love to all.
Thursday, December 6, 2018
Saturday, December 1, 2018
Yes it IS Plasmacytoma
We got the biopsy report yesterday - it is definitely a plasmacytoma.
Dr. Matous, in Denver, has approved the local oncologist Dr. O to give the infusions. In fact, he knows her, so that helps a lot. Dr O will be contacting the radiation oncologist at Shaw Cancer Center in Edwards CO. We would really like to get the radiation treatments started as soon as possible since Dr. M says radiation needs to come before the chemo infusions. Hoping to hear Monday about an appointment.
Love to all.
Dr. Matous, in Denver, has approved the local oncologist Dr. O to give the infusions. In fact, he knows her, so that helps a lot. Dr O will be contacting the radiation oncologist at Shaw Cancer Center in Edwards CO. We would really like to get the radiation treatments started as soon as possible since Dr. M says radiation needs to come before the chemo infusions. Hoping to hear Monday about an appointment.
Love to all.
Thursday, November 29, 2018
Plasmacytoma?
Yesterday we drove to Denver for our routine appointment with Doug's myeloma oncologist. We know that Doug's light chains have been steadily creeping up over the last few months. Dr. M felt there was time to wait before changing Doug to a different treatment, because he has been doing very well clinically (no symptoms other than the rising light chains). Doug had a PET/CT scan done 9-10-18 to check if there were any active lesions - none were seen. So we continued on with the "watch and wait".
Yesterday, since the light chains had climbed to 471 mg/L, Dr. M said it's time Doug thought about starting the new treatment. But he said we could afford to wait until January.
But while Dr. M was doing his physical exam on Doug, we pointed out a lump on his upper right arm. This lump was there at the September appointment, but both the myeloma doc and our nurse practitioner at home thought is was just a lipoma (benign fatty tumor). But it has been growing. Dr. M palpated it and this time he said it could be a plasmacytoma, which would be part of the myeloma (cancer of plasma cells of the blood). So Dr. M phoned a colleague of his and off we went to radiology where a core needle biopsy was done with ultrasound guidance. We are so glad it could be done the same day. We should hopefully get results tomorrow.
Dr. M says if it is a plasmacytoma, Doug will need to have it treated with radiation, and after that, he will need to start on a new treatment as soon as possible. This would be via infusion, not pills.
We don't know what tomorrow holds, but we know Who holds tomorrow!
More soon.
Yesterday, since the light chains had climbed to 471 mg/L, Dr. M said it's time Doug thought about starting the new treatment. But he said we could afford to wait until January.
But while Dr. M was doing his physical exam on Doug, we pointed out a lump on his upper right arm. This lump was there at the September appointment, but both the myeloma doc and our nurse practitioner at home thought is was just a lipoma (benign fatty tumor). But it has been growing. Dr. M palpated it and this time he said it could be a plasmacytoma, which would be part of the myeloma (cancer of plasma cells of the blood). So Dr. M phoned a colleague of his and off we went to radiology where a core needle biopsy was done with ultrasound guidance. We are so glad it could be done the same day. We should hopefully get results tomorrow.
Dr. M says if it is a plasmacytoma, Doug will need to have it treated with radiation, and after that, he will need to start on a new treatment as soon as possible. This would be via infusion, not pills.
We don't know what tomorrow holds, but we know Who holds tomorrow!
More soon.
Wednesday, October 3, 2018
Endoscopy and Colonoscopy
Doug has been having some G.I. issues, so today he had an upper endoscopy and a colonoscopy. As many of you know, the prep is the worst part!
Here's what the surgeon said: "Diverticulosis throughout colon. Start using Metamucil fiber supplement. Subtle area of thickening was biopsied. Endoscopy - Inflammation of stomach and first portion of small intestine. Hiatal hernia is evident but no inflammation of esophagus. Took several biopsies."
It will take about two weeks to get the biopsy reports back. We are not too worried about that.
I can't help but wonder if all the drugs Doug has taken over the last ten years is playing a part in the unhappy G.I. tract. We'll never know.
The light chains continue to rise. The latest MM panel was done Sept 25. The Lambda light chains went from 187 to 223. Definitely high but it's been higher. When Doug relapsed in 2015, the Lambda light chains were 269. So we know a change of treatment is ahead, just not when. Doug will get another blood draw towards the end of October. We trust the myeloma specialist will take action accordingly. It's not easy to wait but we're getting plenty of practice!
The weather here is delightful. Chilly evenings and nights but no hard frost yet. Days are mostly warm and the trees are beautiful shades of yellow and gold. We hope to see snow on the mountains soon!
We celebrated our 40 year wedding anniversary last week! The date is actually Oct 2, but because of the prep, we celebrated a week early. We took a day trip to Colorado Springs, did some shopping and enjoyed lunch at our favorite Italian restaurant.
Love to all.
"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand." Isaiah 41:10
Here's what the surgeon said: "Diverticulosis throughout colon. Start using Metamucil fiber supplement. Subtle area of thickening was biopsied. Endoscopy - Inflammation of stomach and first portion of small intestine. Hiatal hernia is evident but no inflammation of esophagus. Took several biopsies."
It will take about two weeks to get the biopsy reports back. We are not too worried about that.
I can't help but wonder if all the drugs Doug has taken over the last ten years is playing a part in the unhappy G.I. tract. We'll never know.
The light chains continue to rise. The latest MM panel was done Sept 25. The Lambda light chains went from 187 to 223. Definitely high but it's been higher. When Doug relapsed in 2015, the Lambda light chains were 269. So we know a change of treatment is ahead, just not when. Doug will get another blood draw towards the end of October. We trust the myeloma specialist will take action accordingly. It's not easy to wait but we're getting plenty of practice!
The weather here is delightful. Chilly evenings and nights but no hard frost yet. Days are mostly warm and the trees are beautiful shades of yellow and gold. We hope to see snow on the mountains soon!
We celebrated our 40 year wedding anniversary last week! The date is actually Oct 2, but because of the prep, we celebrated a week early. We took a day trip to Colorado Springs, did some shopping and enjoyed lunch at our favorite Italian restaurant.
Love to all.
"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand." Isaiah 41:10
Wednesday, September 12, 2018
PET Scan, no new bone lesions
Monday we drove to Denver for Doug's PET scan. Compared to the last scan in 2014, there are no new bone lesions! Very good news! But the radiologist did see some activity in a few lymph nodes. Several small nodes in his chest, and one above the collar bone. The oncologist could not feel anything there. Multiple Myeloma does not usually go to lymph nodes, so it is a mystery. And we are not going to worry about it.
The light chains are high but stable. So Doug will stay on his current regime of Pomalyst and Prednisone. No infusions yet! Doug will get blood drawn every month for the myeloma panel (to check light chains), and we will see the oncologist every two months.
It was a long 14 hour day from start to finish but a good day! No weather or traffic problems.
Praise God, and blessings to all.
The light chains are high but stable. So Doug will stay on his current regime of Pomalyst and Prednisone. No infusions yet! Doug will get blood drawn every month for the myeloma panel (to check light chains), and we will see the oncologist every two months.
It was a long 14 hour day from start to finish but a good day! No weather or traffic problems.
Praise God, and blessings to all.
Saturday, September 8, 2018
Cardiac stress test, Ten years after diagnosis
Doug stopped the Ninlaro with the oncologist's approval, since it wasn't working anyway. His fatigue has lessened some.
Last Thursday we drove to Colorado Springs - a two hour drive each way - for Doug's cardiac stress test. We had to leave at 5 a.m., well before dawn. I took the first half of the drive since I can see a little better in the dark. We had quite a bit of fog. The stress test was via nuclear medicine, since he has a heart stent. We won't get results for a while.
After that, we had time to get lunch, then on to an appointment with the glaucoma specialist. Doug's eye pressure is high in the eye that got the Zen Gel stent last November. So he has to go back on prescription eye drops. The other eye is already on eye drops. Doug is losing more eyesight. We go back in two months.
We got home about 4:30 p.m. A long day but safe travel.
Monday we will have another long day, this time in Denver, with the PET scan and oncologist appointment.
We are past the ten year mark!
Love to all.
Last Thursday we drove to Colorado Springs - a two hour drive each way - for Doug's cardiac stress test. We had to leave at 5 a.m., well before dawn. I took the first half of the drive since I can see a little better in the dark. We had quite a bit of fog. The stress test was via nuclear medicine, since he has a heart stent. We won't get results for a while.
After that, we had time to get lunch, then on to an appointment with the glaucoma specialist. Doug's eye pressure is high in the eye that got the Zen Gel stent last November. So he has to go back on prescription eye drops. The other eye is already on eye drops. Doug is losing more eyesight. We go back in two months.
We got home about 4:30 p.m. A long day but safe travel.
Monday we will have another long day, this time in Denver, with the PET scan and oncologist appointment.
We are past the ten year mark!
Love to all.
Friday, August 10, 2018
Need PET scan, Ninlaro not working
The last blood test (MM panel) showed the Lambda light chains rose again. From 139.2 to 197.8. Normal is 5 to 26. So the Ninlaro is not improving things.
Today we went to Denver to see the Myeloma specialist. He wants Doug to have a PET scan, to check for any new plasmacytomas.
A Plasmacytoma is a plasma cell tumor that grows within soft tissue or in bone. Myeloma is a cancer of plasma blood cells. They originate in bone marrow.
The results of the PET scan will help the doc decide on future treatment. Whichever drug it is, we know it will be given by infusion.
The PET scan is scheduled for September 10, in Denver. Early a.m. and then we will stick around so the doc can get results and discuss with us. It might be a long day.
Denver traffic was very busy as usual, but no huge delays. We shared the driving and it was a safe trip, praise God!
Doug is still having the fatigue but he is coping well.
Meanwhile life goes on. We are looking forward to a birthday party for our son who will turn 50! How did that happen? He's a wonderful son and father of our grandkids.
Love to all.
Today we went to Denver to see the Myeloma specialist. He wants Doug to have a PET scan, to check for any new plasmacytomas.
A Plasmacytoma is a plasma cell tumor that grows within soft tissue or in bone. Myeloma is a cancer of plasma blood cells. They originate in bone marrow.
The results of the PET scan will help the doc decide on future treatment. Whichever drug it is, we know it will be given by infusion.
The PET scan is scheduled for September 10, in Denver. Early a.m. and then we will stick around so the doc can get results and discuss with us. It might be a long day.
Denver traffic was very busy as usual, but no huge delays. We shared the driving and it was a safe trip, praise God!
Doug is still having the fatigue but he is coping well.
Meanwhile life goes on. We are looking forward to a birthday party for our son who will turn 50! How did that happen? He's a wonderful son and father of our grandkids.
Love to all.
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