Today was Doug's Zometa infusion. Before every infusion, he gets a blood draw to check the kidney values (BUN and Creatinine), since the Zometa can be hard on kidneys. Today his BUN was 28. Last month it was 20, which is on the high end of normal. Creatinine was 1.4 today (high but stable for Doug). BUN is affected by hydration, or lack of.
So Dr. M ordered a reduction in the Zometa dose, and ordered it be given with one liter of fluid. Takes a long time for a liter to drip in.
Doug thinks he has been drinking a lot, but he takes small sips, so doesn't actually drink as much as he needs. Today the nurse got on his case, in a nice way. Told him he needs to 'guzzle' instead of sipping! Just what I had been telling him; but it has more effect coming from someone else. He's supposed to drink at least two liters a day, and three is even better.
Poor guy - he's hearing "don't eat that, eat this"; "drink more"; "exercise more" - yada yada yada. Can't blame him for putting his earbuds in!
We leave in the morning for Texas. This is our first time traveling without dogs in tow. We miss the dogs but sans dogs is much easier. Life is good.
Love to all.
From my "Jesus Calling" book:
"My Face is shining upon
you, beaming out Peace that surpasses all
understanding. You are surrounded by a sea of problems, but you are face to
face with Me, your Peace. As long as you focus on Me, you are safe."
Thursday, January 19, 2012
Friday, January 13, 2012
"Officially Diabetic"
Doug's blood sugar has been rising slowly over the last few years. So a few days ago he went to our Family Nurse Practitioner for a repeat hemoglobin A1c test. (The cancer specialists have 'tunnel vision' like most specialists - they only look at one aspect of health.)
This most recent A1c test had a result of 7.4, which according to our FNP means that now Doug is "officially diabetic". His blood glucose was 144.
The dexamethasone is no doubt elevating the blood sugar. After consulting with physicians, the consensus is to control it with diet and exercise and not add any drugs right now. That seems to be a good sensible approach.
We can't blame it all on the dex -- for years Doug has followed a poor diet. Even suggestions and nagging by the wife hasn't had much effect. He eats everything a typical ten year old boy would like, and has always had an aversion to 'healthy stuff'. But now he isn't going to be able to get by with that. He's going to really try to eat better. Before the relapse pulled the rug from under us, we had started to count carbs and eat only the 'good carbs'. Now we have to get back to that.
The exercise part - during the months that Doug's hip pain was so intense, he could walk only very short distances, and so became sedentary. Now the hip pain is mostly gone, so he has started walking a little more each day. In addition to walking, we got an exercise band to use at home. Need to build up those muscles again.
Good news is that we are leaving next week for a visit to Texas, where we have a lot in a private RV community. Doug is looking forward to warmer weather. We'll stay about two months, then we need to head home to keep up with doctor visits.
The road on this part of the Myeloma Journey is relatively smooth, with only a bumpy part here and there.
Love to all.
"The essence of philosophy is that a man should so live that his happiness shall depend as little as possible on external things." Epictetus
This most recent A1c test had a result of 7.4, which according to our FNP means that now Doug is "officially diabetic". His blood glucose was 144.
The dexamethasone is no doubt elevating the blood sugar. After consulting with physicians, the consensus is to control it with diet and exercise and not add any drugs right now. That seems to be a good sensible approach.
We can't blame it all on the dex -- for years Doug has followed a poor diet. Even suggestions and nagging by the wife hasn't had much effect. He eats everything a typical ten year old boy would like, and has always had an aversion to 'healthy stuff'. But now he isn't going to be able to get by with that. He's going to really try to eat better. Before the relapse pulled the rug from under us, we had started to count carbs and eat only the 'good carbs'. Now we have to get back to that.
The exercise part - during the months that Doug's hip pain was so intense, he could walk only very short distances, and so became sedentary. Now the hip pain is mostly gone, so he has started walking a little more each day. In addition to walking, we got an exercise band to use at home. Need to build up those muscles again.
Good news is that we are leaving next week for a visit to Texas, where we have a lot in a private RV community. Doug is looking forward to warmer weather. We'll stay about two months, then we need to head home to keep up with doctor visits.
The road on this part of the Myeloma Journey is relatively smooth, with only a bumpy part here and there.
Love to all.
"The essence of philosophy is that a man should so live that his happiness shall depend as little as possible on external things." Epictetus
Wednesday, January 4, 2012
Great News
Today was the oncology visit; we got the results of the light chain assay. Doug has had an amazingly wonderful response to the Rev/dex chemo. The light chains are now down into the normal range! After just one cycle of chemo, the Lambda light chains went from 83 to 1.95 mg/dL. Wow. What a relief; we had steeled ourselves for possible bad news. Even the doc was happily surprised by the dramatic response.
Doug's kidney function has improved too. The GFR is now up to 70. We'll take it! Because of the kidney improvement, the Revlimid dose can be upped to 25 mg where it should be.
Doug will stay on the Revlimid/dex combo for 6 to 12 months, as well as the Zometa. Then the Revlimid dose can be lowered to a maintenance dose. That will continue as long as it is working.
At some point, the multiple myeloma cancer cells stop responding to whatever drug was working. When that happens we'll need to move on to the next drug. But hopefully that won't be for a long time.
We are so very grateful. We give praise to God and thanks to all who pray for us.
Love to all.
“You thrill me, Lord, with all you have done for me! I sing with joy because of what you have done.” Psalm 92:4
Doug's kidney function has improved too. The GFR is now up to 70. We'll take it! Because of the kidney improvement, the Revlimid dose can be upped to 25 mg where it should be.
Doug will stay on the Revlimid/dex combo for 6 to 12 months, as well as the Zometa. Then the Revlimid dose can be lowered to a maintenance dose. That will continue as long as it is working.
At some point, the multiple myeloma cancer cells stop responding to whatever drug was working. When that happens we'll need to move on to the next drug. But hopefully that won't be for a long time.
We are so very grateful. We give praise to God and thanks to all who pray for us.
Love to all.
“You thrill me, Lord, with all you have done for me! I sing with joy because of what you have done.” Psalm 92:4
Sunday, January 1, 2012
New Year Prayer
Doug and I went to church today, and after a wonderful service we were blessed to work in the kitchen serving rolls, coffee and juice. Our church and the people in it always refresh our spirits.
I found this anonymous New Year's prayer; it spoke to me and I hope you enjoy it too:
May God make your year a happy one!
Not by shielding you from all sorrows and pain,
But by strengthening you to bear it, as it comes;
Not by making your path easy,
But by making you sturdy to travel any path;
Not by taking hardships from you,
But by taking fear from your heart;
Not by granting you unbroken sunshine,
But by keeping your face bright, even in the shadows;
Not by making your life always pleasant,
But by showing you when people and their causes need you most,
and by making you anxious to be there to help.
God’s love, peace, hope and joy to you for the year ahead.
I found this anonymous New Year's prayer; it spoke to me and I hope you enjoy it too:
May God make your year a happy one!
Not by shielding you from all sorrows and pain,
But by strengthening you to bear it, as it comes;
Not by making your path easy,
But by making you sturdy to travel any path;
Not by taking hardships from you,
But by taking fear from your heart;
Not by granting you unbroken sunshine,
But by keeping your face bright, even in the shadows;
Not by making your life always pleasant,
But by showing you when people and their causes need you most,
and by making you anxious to be there to help.
God’s love, peace, hope and joy to you for the year ahead.
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
Subscribe to:
Posts (Atom)
