Love to all, and our best wishes for
Saturday, December 31, 2011
Waiting
Nothing much has happened lately. Doug is having relatively minor side effects from the Revlimid/Dex chemo. Trouble sleeping, fatigue, indigestion. He gets 'wired' at times and has trouble relaxing. Understandable. Next week we will get results to see how effective this chemo has been. Stay tuned.
Love to all, and our best wishes for
Love to all, and our best wishes for
Saturday, December 24, 2011
Merry Christmas
We went to the most wonderful Christmas Eve service tonight at our church. Doug has not wanted to go anywhere or do anything lately, but I'm glad he made the effort tonight. It was inspirational and lovely.
I found this from Max Lucado:
"God isn't going to
let you see the distant scene.
So you might as well quit looking for it.
He promises a lamp unto our feet,
not a crystal ball into the future.
We do not need to know what
will happen tomorrow.
We only need to know He leads."
As we celebrate this Christmas season, may you feel His loving presence in everything you do.
I found this from Max Lucado:
"God isn't going to
let you see the distant scene.
So you might as well quit looking for it.
He promises a lamp unto our feet,
not a crystal ball into the future.
We do not need to know what
will happen tomorrow.
We only need to know He leads."
As we celebrate this Christmas season, may you feel His loving presence in everything you do.
Tuesday, December 20, 2011
Radiation Consult on Right Arm
Today we went to Shaw Cancer Center for a consult with the Radiation Oncologist regarding Doug's right arm. The bone skeletal survey had shown a 5 cm. lesion in the upper arm. Dr. H. showed us the x-rays and said although the cortex (the strong outside part of the bone - picture the bone of a round steak) is not involved, the marrow has lots of myeloma present.
Doug is not having any pain in the arm. Dr. H said there is a possibility of pathological fracture, but she can't be sure if that would happen.
We decided to wait on the radiation. We'll know in about two more weeks if the Revlimid/Dex is successful in lowering the light chains. If the light chains go down, and Doug does not develop pain in the arm, then radiation might not be needed.
We saw today the result of the baseline FreeLite test that was done on 12-13 before Doug started the Revlimid/Dex chemo; we knew it would not show any improvement.
July 5 the light chains were 41.3 mg/dL
Oct 6 the number was 47.3
Dec 13 was 83.0
The scary part here is how fast the light chains are rising. In 10 weeks they almost doubled.
The light chain numbers are the indicator of disease progression. Going higher is not good. We need them to come way down.
The next FreeLite blood test will be done Jan 2, after the first course of chemo. We see the oncologist Dr. M on Jan 4. Hopefully he will have the results then. If the light chains don't go down, then we go to Plan B. Waiting is hard.
Doug is feeling pretty good with only slight side effects from the chemo - some fatigue and altered taste buds and constipation. He manages to stay calm and his sense of humor is intact. He does take Ativan to help him sleep at night. On the Dex days he needs a sleeping pill; the Dex 'wires' him.
The roads were good with only slight snowpack. Snow on the high mountains was gorgeous. On the way we saw 7 or 8 Bighorn Sheep - they crossed the road in front of us. Magnificent animals.
Love to all.
Be still in the presence of the Lord and wait patiently for him to act. Psalm 37:7
Doug is not having any pain in the arm. Dr. H said there is a possibility of pathological fracture, but she can't be sure if that would happen.
We decided to wait on the radiation. We'll know in about two more weeks if the Revlimid/Dex is successful in lowering the light chains. If the light chains go down, and Doug does not develop pain in the arm, then radiation might not be needed.
We saw today the result of the baseline FreeLite test that was done on 12-13 before Doug started the Revlimid/Dex chemo; we knew it would not show any improvement.
July 5 the light chains were 41.3 mg/dL
Oct 6 the number was 47.3
Dec 13 was 83.0
The scary part here is how fast the light chains are rising. In 10 weeks they almost doubled.
The light chain numbers are the indicator of disease progression. Going higher is not good. We need them to come way down.
The next FreeLite blood test will be done Jan 2, after the first course of chemo. We see the oncologist Dr. M on Jan 4. Hopefully he will have the results then. If the light chains don't go down, then we go to Plan B. Waiting is hard.
Doug is feeling pretty good with only slight side effects from the chemo - some fatigue and altered taste buds and constipation. He manages to stay calm and his sense of humor is intact. He does take Ativan to help him sleep at night. On the Dex days he needs a sleeping pill; the Dex 'wires' him.
The roads were good with only slight snowpack. Snow on the high mountains was gorgeous. On the way we saw 7 or 8 Bighorn Sheep - they crossed the road in front of us. Magnificent animals.
Love to all.
Be still in the presence of the Lord and wait patiently for him to act. Psalm 37:7
Monday, December 12, 2011
Progress at last
Today we spent an hour at the oncologist's office. Doug's kidney function is down. The GFR is now 51, was 54 last week. We would like to see the GFR at least 60.
So Dr. M. ordered the Revlimid dose lowered to 10 mg instead of 25.
His assistant spent at least 30 minutes on the phone to Accredo, the pharmacy; she talked to five different people. Since the dose was not the same as originally ordered, there was confusion on their end; Medco/Accredo does not have the most efficient organization. At one point it seemed like we might have to start over with the paperwork. Finally they agreed to ship the Revlimid - it should come tomorrow. Yeah, at last! Doug should have been on Revlimid two weeks ago.
Now we have ammunition to fight this cancer. We should know in a month if the Revlimid is knocking back the myeloma light chains. If yes, Doug stays on it. If no, then we go to Plan B, which is adding another chemo drug.
Although Doug's kidney function is worrisome, at this point it is considered adequate. Dr. M. told us that he thinks we will see improved kidney function when the chemo reduces the light chain load.
We were supposed to have a consult with the radiation oncologist in Edwards tomorrow -- we have put that off until next week, as we need to be home to accept delivery of the Revlimid. Doug will go to the hospital tomorrow to get a blood draw so we can have a baseline on the light chains right before he takes the Rev. I will stay home to sign for the Rev.
There have been a lot of emotional ups and downs lately, but now we feel we are doing something to attack this disease. Feels good.
So Dr. M. ordered the Revlimid dose lowered to 10 mg instead of 25.
His assistant spent at least 30 minutes on the phone to Accredo, the pharmacy; she talked to five different people. Since the dose was not the same as originally ordered, there was confusion on their end; Medco/Accredo does not have the most efficient organization. At one point it seemed like we might have to start over with the paperwork. Finally they agreed to ship the Revlimid - it should come tomorrow. Yeah, at last! Doug should have been on Revlimid two weeks ago.
Now we have ammunition to fight this cancer. We should know in a month if the Revlimid is knocking back the myeloma light chains. If yes, Doug stays on it. If no, then we go to Plan B, which is adding another chemo drug.
Although Doug's kidney function is worrisome, at this point it is considered adequate. Dr. M. told us that he thinks we will see improved kidney function when the chemo reduces the light chain load.
We were supposed to have a consult with the radiation oncologist in Edwards tomorrow -- we have put that off until next week, as we need to be home to accept delivery of the Revlimid. Doug will go to the hospital tomorrow to get a blood draw so we can have a baseline on the light chains right before he takes the Rev. I will stay home to sign for the Rev.
There have been a lot of emotional ups and downs lately, but now we feel we are doing something to attack this disease. Feels good.
I will rescue those who love me. I will protect those who
trust in my name. When they call on me, I will answer; I will be with them and
honor them. Psalm 91:14-15
Sunday, December 11, 2011
My Dream
I don't usually remember dreams, and I have never put a lot of stock into interpreting dreams. But last night I had a dream that was crystal clear and I could remember details. I wrote it down when I got up.
The bridge gets narrower,
and suddenly the center drops out - I have only a few inches to walk on. I grip
the railing and walk carefully. The foundation is still strong. I am careful
not to look down at the sea, but I can hear it. Don't look down!
The planking sometimes gets
wider again and the large hole in the center disappears. A thick fog rolls in; I can't see
ahead. I have to hold on or I might fall. The ocean is below. The bridge
surface is not smooth anymore - it has some holes in it - I almost step through a hole. Hold tight to the
railing. Keep walking, the railing will hold me. I feel scared because I can't
see anything. Is there a sharp turn ahead? Will the bridge suddenly end - will
I fall off? Hold on tight. The bridge will not fail if I hold on to the
railing.
The fog lifts but all I can
see is the bridge ahead and the sea below. I feel calmer - I don't seem worried
and I keep walking.
That's all; no dramatic ending. The bridge foundation is my faith in God; the railing is my trust in Him. The sea is Multiple Myeloma; the holes are Worry. I am not sure what the fog represents.
The future is unknown. Hold on to the railing.
I am standing on a bridge.
It is large and wide, wide enough for cars. The bridge rests on huge round
concrete looking support pillars. It looks safe, and I am holding onto a sturdy
railing. I start walking - the only things I can see are the bridge ahead of me
and the sea underneath. I am walking confidently but I don't know where I am
going. There is no one else with me.
That's all; no dramatic ending. The bridge foundation is my faith in God; the railing is my trust in Him. The sea is Multiple Myeloma; the holes are Worry. I am not sure what the fog represents.
The future is unknown. Hold on to the railing.
Saturday, December 10, 2011
Baby steps
Thursday the Accredo pharmacy called to get our credit card number. They put a hefty charge on it. Fortunately, the patient assistance grant came though; they will reimburse us for out of pocket expenses for medications, up to a certain point. We are so thankful for that.
Yesterday, someone else from Accredo called to check our address for delivery of the Revlimid. We had to tell them to hold the shipment until Monday because of the possible dose adjustment. Baby steps.
Dr. M, the oncologist, called yesterday. He said the radiologist doesn't think Doug's arm is in danger of fracturing. However, Dr. M wants us to go see the radiation oncologist, to get her opinion. So next Tuesday we have an appointment with Dr. Hardenburgh in Edwards.
Monday we should find out about Doug's kidney function. That is my key concern right now. Meanwhile we are counting our joys.
Yesterday, someone else from Accredo called to check our address for delivery of the Revlimid. We had to tell them to hold the shipment until Monday because of the possible dose adjustment. Baby steps.
Dr. M, the oncologist, called yesterday. He said the radiologist doesn't think Doug's arm is in danger of fracturing. However, Dr. M wants us to go see the radiation oncologist, to get her opinion. So next Tuesday we have an appointment with Dr. Hardenburgh in Edwards.
Monday we should find out about Doug's kidney function. That is my key concern right now. Meanwhile we are counting our joys.
Man
is fond of counting his troubles but he does not count his joys. If he counted
them up as he ought, he would see that every lot has enough happiness provided
for it. Fyodor Dostoevski
Thursday, December 8, 2011
Results of skeletal survey, Kidney Function
Today Doug had his Zometa infusion done at the hospital infusion center. It takes about an hour for the infusion because Doug needs extra fluids given to help protect his kidneys. A blood draw is always done first to check his creatinine. More on kidneys later in this post.
Dr Myers gave us the results of yesterday's skeletal survey: scattered small lesions in the skull, pelvis, upper femurs. The largest lesion was seen in the upper right arm. The small ones are not expected to be a problem; the Zometa should encourage bone repair in those areas. The radiologist could not see if the bony cortex is involved in the right arm - we don't know if that area could be in danger of pathological fracture. So Dr. M ordered a CT scan of the right upper arm; luckily we were able to get that done while we were at the hospital. If it looks serious enough, Doug might need more radiation therapy. I have a gut feeling that won't be necessary but we'll wait and see.
The big concern today is kidney function. Doug had kidney damage from lack of blood flow when he had the complete heart block in 2009; the kidneys recovered fairly well from that. The myeloma itself can cause kidney damage -- especially light chain myeloma which Doug has now. Zometa is also hard on kidneys; that's why extra fluids are administered along with the Zometa.
Today's blood test showed creatinine of 1.4, BUN 20 and eGFR 54. According to one of my sources, BUN and creatinine will not be raised above the normal range until 60% of total kidney function is lost.
Our local oncologist Dr. M conferred with the super-specialist in Denver, Dr. Jeff. Doug will need to do a 24 hour urine test to get a better read on the GFR.
Both doctors say that if the GFR is less than 60, Doug won't be able to get the full dose of Revlimid. Revlimid is a nephrotoxic drug, meaning that it can harm the kidneys. This is a catch-22. Doug needs the highest dose of Revlimid (25 mg) to attack the cancer. But he also needs his kidneys to keep functioning! A lower dose would be less damaging to the kidneys, but not as effective against the myeloma.
All those out there who pray for us, please pray for adequate kidney function so Doug can get the full dose of Revlimid to fight the cancer.
Our spirits are good. Doug looks very good - just by looking at him, no one would ever know he has cancer.
"We who have fled to God for refuge can have great confidence as we hold to the hope that lies before us. This hope is a strong and trustworthy anchor for our souls. It leads us through the curtain into God’s inner sanctuary." Hebrews 6:18-19
Dr Myers gave us the results of yesterday's skeletal survey: scattered small lesions in the skull, pelvis, upper femurs. The largest lesion was seen in the upper right arm. The small ones are not expected to be a problem; the Zometa should encourage bone repair in those areas. The radiologist could not see if the bony cortex is involved in the right arm - we don't know if that area could be in danger of pathological fracture. So Dr. M ordered a CT scan of the right upper arm; luckily we were able to get that done while we were at the hospital. If it looks serious enough, Doug might need more radiation therapy. I have a gut feeling that won't be necessary but we'll wait and see.
The big concern today is kidney function. Doug had kidney damage from lack of blood flow when he had the complete heart block in 2009; the kidneys recovered fairly well from that. The myeloma itself can cause kidney damage -- especially light chain myeloma which Doug has now. Zometa is also hard on kidneys; that's why extra fluids are administered along with the Zometa.
Today's blood test showed creatinine of 1.4, BUN 20 and eGFR 54. According to one of my sources, BUN and creatinine will not be raised above the normal range until 60% of total kidney function is lost.
Our local oncologist Dr. M conferred with the super-specialist in Denver, Dr. Jeff. Doug will need to do a 24 hour urine test to get a better read on the GFR.
Glomerular
filtration rate (GFR)
describes the flow rate of filtered fluid through the kidney. It tells what the renal (kidney) function is - a more sensitive test.
Both doctors say that if the GFR is less than 60, Doug won't be able to get the full dose of Revlimid. Revlimid is a nephrotoxic drug, meaning that it can harm the kidneys. This is a catch-22. Doug needs the highest dose of Revlimid (25 mg) to attack the cancer. But he also needs his kidneys to keep functioning! A lower dose would be less damaging to the kidneys, but not as effective against the myeloma.
All those out there who pray for us, please pray for adequate kidney function so Doug can get the full dose of Revlimid to fight the cancer.
Our spirits are good. Doug looks very good - just by looking at him, no one would ever know he has cancer.
"We who have fled to God for refuge can have great confidence as we hold to the hope that lies before us. This hope is a strong and trustworthy anchor for our souls. It leads us through the curtain into God’s inner sanctuary." Hebrews 6:18-19
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