It was eight years ago this month that Doug was diagnosed with Multiple Myeloma. We knew it was not curable, but we did not know how long he had to live. I never dreamed he would be doing so good eight years later.
Some of those years had very rough times. Such as the life threatening complication with his heart during the recovery phase of the stem cell transplant. He was in ICU on a ventilator, and after his heart healed (thank you God) he was in rehab to re-learn how to walk. He came through that but it took a while. There were other difficult times but not as dramatic as that.
We both have gained from this myeloma journey; it has brought blessings as well as hard times. Our marriage is stronger, our faith in the Lord is steadfast now. God has brought us so many true friends who help us whenever we need anything. And we have a thankful attitude, taking nothing for granted.
Quality of life is great despite Doug having glaucoma, diabetes and not so much stamina. So we are very thankful, especially for our myeloma oncology specialist in Denver.
We saw him in Denver three days ago. Dr. M is very pleased that Doug is doing so well. He says people can stay on Pomalyst for a long time without problems. So Doug will continue on this maintenance program. Doug will see Dr. M again in October.
Last week Doug woke in the night with painful "pins and needles" in the toes on his right foot. He has mild peripheral neuropathy but has numbness, not pins and needles. So that worried me, that somehow the neuropathy was getting worse. It happened one night and has not happened since. Whew!
Love and peace to all.
"I give you thanks, O Lord, with all my heart; I will sing your praises before the gods. I bow before your holy Temple as I worship. I praise your name for your unfailing love and faithfulness; for your promises are backed by all the honor of your name. As soon as I pray, you answer me; you encourage me by giving me strength." Psalm 138:1-3 NLT
Saturday, August 27, 2016
Friday, June 17, 2016
Doing Well!
I have not written for a while. That's a good sign. We have been busy doing "normal stuff".
Doug has not had any more trouble with neck pain like what happened in Nebraska. We think it was a flare up of arthritis.
He is still in remission and doing very well. The light chains are in the normal range. He had a Dexa scan last month; his bone density is normal. That is amazing. He won't need to have any more Zometa unless we "have a hiccup" as the oncologist says.
The only not-good news is that Doug's optic nerve in the left eye has degraded due to the glaucoma. Nothing can be done about that. I have noticed that he doesn't see detail as well as he used to, but driving and reading seem to be okay.
The diabetes is under control with diet and metformin. The most recent A1C was 6.8 which the nurse practitioner calls good for Doug.
There is exciting news regarding metformin and some cancers, including myeloma. Metformin seems to be able to combat cancer - and Doug is already on it!
The following is from mdanderson.org:
"In separate studies of patients who had prostate cancer, colorectal cancer, pancreatic cancer, triple-negative breast cancer, HER2-positive breast cancer, and multiple myeloma, the median overall survival durations were found to be longer in patients who had taken metformin than in those who had not."
And it's a cheap drug! This almost makes me glad that Doug developed diabetes.
More studies are being done, especially by M.D. Anderson, but it seems too good to be true, even though it is not a cure. If you want to know more, just google 'metformin and cancer'.
Doug has not had any more trouble with neck pain like what happened in Nebraska. We think it was a flare up of arthritis.
He is still in remission and doing very well. The light chains are in the normal range. He had a Dexa scan last month; his bone density is normal. That is amazing. He won't need to have any more Zometa unless we "have a hiccup" as the oncologist says.
The only not-good news is that Doug's optic nerve in the left eye has degraded due to the glaucoma. Nothing can be done about that. I have noticed that he doesn't see detail as well as he used to, but driving and reading seem to be okay.
The diabetes is under control with diet and metformin. The most recent A1C was 6.8 which the nurse practitioner calls good for Doug.
There is exciting news regarding metformin and some cancers, including myeloma. Metformin seems to be able to combat cancer - and Doug is already on it!
The following is from mdanderson.org:
"In separate studies of patients who had prostate cancer, colorectal cancer, pancreatic cancer, triple-negative breast cancer, HER2-positive breast cancer, and multiple myeloma, the median overall survival durations were found to be longer in patients who had taken metformin than in those who had not."
And it's a cheap drug! This almost makes me glad that Doug developed diabetes.
More studies are being done, especially by M.D. Anderson, but it seems too good to be true, even though it is not a cure. If you want to know more, just google 'metformin and cancer'.
We planted a tree in the backyard today. Doug dug the hole. What an entirely ordinary thing - except that wouldn't have been possible if he were not doing so well. We don't take things for granted. Praise the Lord!
Love to all.
"To wait, biblically speaking, is not to assume the worst, worry, fret, make demands, or take control. Nor is waiting inactivity. It is a sustained effort to stay focused on God through prayer and belief." Max Lucado
Love to all.
"To wait, biblically speaking, is not to assume the worst, worry, fret, make demands, or take control. Nor is waiting inactivity. It is a sustained effort to stay focused on God through prayer and belief." Max Lucado
Tuesday, April 19, 2016
Jump in Light Chains - a fluke?
Doug is in remission. But the most recent myeloma panel, drawn April 1, showed a jump in the Lambda light chains: up to 92, when the one before that was 16. 16 is in the normal range, 92 is not. What does this mean? Is he falling out of remission, or is this one a fluke? The oncologist says the light chains can be fickle. Doug's next Denver appointment is June 8, so we asked if we can get another myeloma panel done before then. We will get the blood draw in May. Meanwhile we play the waiting game.
We left a week ago for eastern Nebraska, to check on Doug's mom and celebrate her 103rd birthday! Amazingly, she is in good health - except for having only peripheral vision, very hard of hearing, and very poor short term memory. She has wonderful 24/7 live in caregivers who take turns (Home Instead is wonderful). They help her dress, fix her meals and encourage her to eat, make sure she takes her meds (only two prescription pills) and try to keep her engaged. Doug's brother and his wife were there also. Mom kept asking "how old am I?" She says "old age isn't for sissies." She is ready to go live in heaven where her loved ones are. I don't understand why God keeps old people on this earth beyond their desire to live, yet babies and young people die. I won't get that answer until I too live in heaven. I believe God has a reason for everything he does.
On the third day of our trip, Doug woke in the hotel room and told me he could not get out of bed. He had severe neck pain. Took me 15 minutes to figure out how to help him get up without causing more pain. I drove him to the local ER; the doc ordered x-rays and a CT scan of the neck. The scan showed a couple of lesions in C-1 and C-2. No way to tell if these are old or new. I looked back in Doug's radiology reports and can't find documentation, but we choose to believe these are old lesions. The doc gave Doug two different kinds of strong pain drugs.
We had planned to stay two more days, and drive on to Omaha to see two of our young adult grandsons. But we decided to cancel those plans and get back home. The pain meds made Doug loopy and unable to drive. So I had to drive us home, a distance of about 600 miles. Anyone who knows me very well knows that I am not a highway driver. I have a very hard time of staying awake and alert enough to be a safe driver. I prayed a lot, and relied on God to enable me to drive safely. And He did! Doug likes to make the trip in one day, but I drove halfway and we continued on the next day. We ran into some rain and light snow, but we beat the big storm that hit the day after. Over 12" of spring snow. Glad I wasn't driving in that.
Yesterday we were able to see our nurse practitioner at our clinic. She thinks Doug has a muscle sprain, probably aggravated by all the driving he did the first day. We gave her a copy of the CT scan done in Nebraska, and she sent it to the radiologist for comparison with an earlier scan done two years ago. No report on that yet.
So we wait. We choose to believe the spine lesions are old ones, and that the rise in light chains is a fluke. We are wearing our rose colored glasses and the view is just fine.
Love to all.
We left a week ago for eastern Nebraska, to check on Doug's mom and celebrate her 103rd birthday! Amazingly, she is in good health - except for having only peripheral vision, very hard of hearing, and very poor short term memory. She has wonderful 24/7 live in caregivers who take turns (Home Instead is wonderful). They help her dress, fix her meals and encourage her to eat, make sure she takes her meds (only two prescription pills) and try to keep her engaged. Doug's brother and his wife were there also. Mom kept asking "how old am I?" She says "old age isn't for sissies." She is ready to go live in heaven where her loved ones are. I don't understand why God keeps old people on this earth beyond their desire to live, yet babies and young people die. I won't get that answer until I too live in heaven. I believe God has a reason for everything he does.
On the third day of our trip, Doug woke in the hotel room and told me he could not get out of bed. He had severe neck pain. Took me 15 minutes to figure out how to help him get up without causing more pain. I drove him to the local ER; the doc ordered x-rays and a CT scan of the neck. The scan showed a couple of lesions in C-1 and C-2. No way to tell if these are old or new. I looked back in Doug's radiology reports and can't find documentation, but we choose to believe these are old lesions. The doc gave Doug two different kinds of strong pain drugs.
We had planned to stay two more days, and drive on to Omaha to see two of our young adult grandsons. But we decided to cancel those plans and get back home. The pain meds made Doug loopy and unable to drive. So I had to drive us home, a distance of about 600 miles. Anyone who knows me very well knows that I am not a highway driver. I have a very hard time of staying awake and alert enough to be a safe driver. I prayed a lot, and relied on God to enable me to drive safely. And He did! Doug likes to make the trip in one day, but I drove halfway and we continued on the next day. We ran into some rain and light snow, but we beat the big storm that hit the day after. Over 12" of spring snow. Glad I wasn't driving in that.
Yesterday we were able to see our nurse practitioner at our clinic. She thinks Doug has a muscle sprain, probably aggravated by all the driving he did the first day. We gave her a copy of the CT scan done in Nebraska, and she sent it to the radiologist for comparison with an earlier scan done two years ago. No report on that yet.
So we wait. We choose to believe the spine lesions are old ones, and that the rise in light chains is a fluke. We are wearing our rose colored glasses and the view is just fine.
Love to all.
Wednesday, April 6, 2016
No More Cytoxan!
Now that he is in remission Doug is finally off cytoxan. I hope the skin thinning gets better; his skin is so fragile and bruises so easily. Pomalyst is cut from 2 mg down to 1 mg, and the pred is cut from 50 mg to 20mg other day. A much better drug situation. He will stay on this maintenance schedule long term - as long as he tolerates it.
Too early to tell yet if he will have more energy.
Doug's glaucoma meds changed also. Now his eye pressure is 14 in both eyes; down from 18, a big improvement. We hope the optic nerve damage won't get worse.
Diabetes low carb diet is very tolerable. Cauliflower "mashed taters" tonight!
We have a trip to Nebraska coming up next week. Doug's mom will turn 103. Amazing very sweet woman. Doug's brother and wife will be there also. I am looking forward to visiting two cousins, two old friends and hopefully two grandsons.
Love to all.
Too early to tell yet if he will have more energy.
Doug's glaucoma meds changed also. Now his eye pressure is 14 in both eyes; down from 18, a big improvement. We hope the optic nerve damage won't get worse.
Diabetes low carb diet is very tolerable. Cauliflower "mashed taters" tonight!
We have a trip to Nebraska coming up next week. Doug's mom will turn 103. Amazing very sweet woman. Doug's brother and wife will be there also. I am looking forward to visiting two cousins, two old friends and hopefully two grandsons.
Love to all.
"All praise to the God and Father of our Lord Jesus Christ. He is the source of every mercy and the God who comforts us." 2 Corinthians 1:3
Saturday, February 20, 2016
REMISSION #4
Yesterday was our visit with the Denver myeloma specialist. He says Doug is now in remission!
Doug has to stay on the present drugs for another six weeks, then Dr. M will begin to taper Doug off one or two of the drugs. He will need to remain on the Pomalyst at a maintenance dose.
This is Doug's forth remission. We hope it will be a long one!
Doug has to stay on the present drugs for another six weeks, then Dr. M will begin to taper Doug off one or two of the drugs. He will need to remain on the Pomalyst at a maintenance dose.
This is Doug's forth remission. We hope it will be a long one!
- Remission #1 was in 2009 after the initial Revlimid and stem cell transplant. At that time the data wasn't in on the benefits of maintenance therapy, so he was off all drugs until he relapsed in October 2011. This is when the myeloma morphed into Light Chain Disease. He went back on Revlimid/dex.
- Remission #2 was in January 2012. That held, on Revlimid maintenance, until he relapsed in July 2014.
- Remission #3 was in November 2014, on CyBorD. Unfortunately, Doug had to stop Velcade in January 2015 due to peripheral neuropathy. Doug did well off treatment for several months until the cancer numbers started to rise.
- Remission #4 in February 2016, on Pomalyst, cytoxan, prednisone. (PCP)
Fortunately, there are at least three drugs for myeloma that Doug has not been on. So in the advent of another relapse, Dr. M will be able to put Doug on one of those.
We had good travel weather yesterday, and no traffic problems in Denver. When we got home, we celebrated with take-out Chinese food. Yum.
God is good, we trust in Him and we have His Peace!
I would like to share part of our devotional this morning, "Jesus Calling" by Sarah Young:
"You will not find lasting peace in the world around you, in circumstances, or in human relationships. The external world is always in flux -- under the curse of death and decay. But there is a gold mine of Peace deep within you, waiting to be tapped. Take time to delve into the riches of My residing Presence. I want you to live increasingly from your real Center, where My Love has an eternal grip on you. I am Christ in you, the hope of Glory."
Wednesday, February 3, 2016
No news is good news
I owe an apology to those who read this blog. I haven't updated in a while. Had an email from a long distance friend who was concerned because she hadn't seen any postings recently. The old saying is true: No news is good news.
Eyes: Doug is having to do three kinds of glaucoma drops three times a day, but his eye pressure is holding at a high but acceptable (for him) level. A lubricating drop has been added to the mix - we love the low humidity here but have to moisturize skin and eyes.
Myeloma: Had the last visit with the myeloma specialist Dec 21. Labs looked good. We now can see him every six weeks rather than every four weeks. Zometa will be given every twelve weeks. The longer break between trips to Denver is welcome.
The FDA has approved three new drugs for myeloma! That's really good news for the future, as we know the cancer cells will eventually "outsmart" the present drug regime.
He has had some GI side effects. Usually constipation but occasionally it goes the other way.
Diabetes: We are doing okay with the low carb eating. His glucose is higher than ideal but our NP says she knows it is due to the prednisone and she's not going to worry about it.
I'm glad eggs are now recognized as safe to eat every day (not that we do), and not a danger to cholesterol. We eat complex carbs in moderation, and a lot of healthy fats - nuts, coconut oil, olive oil, even real butter in moderation. No more "light" or "fat free" foods; they take away the fat but substitute sugar or other chemicals instead. Read the labels.
Doug had a lipid panel done two weeks ago - his cholesterol level was the best it's been in years!
We are staying inside during the cold weather and avoiding anyone who is coughing or has a sore throat. Glad our little dogs can get exercise playing inside.
So we are doing well and appreciating all our blessings, thankful for God's provision.
Love to all.
Eyes: Doug is having to do three kinds of glaucoma drops three times a day, but his eye pressure is holding at a high but acceptable (for him) level. A lubricating drop has been added to the mix - we love the low humidity here but have to moisturize skin and eyes.
Myeloma: Had the last visit with the myeloma specialist Dec 21. Labs looked good. We now can see him every six weeks rather than every four weeks. Zometa will be given every twelve weeks. The longer break between trips to Denver is welcome.
The FDA has approved three new drugs for myeloma! That's really good news for the future, as we know the cancer cells will eventually "outsmart" the present drug regime.
He has had some GI side effects. Usually constipation but occasionally it goes the other way.
Diabetes: We are doing okay with the low carb eating. His glucose is higher than ideal but our NP says she knows it is due to the prednisone and she's not going to worry about it.
I'm glad eggs are now recognized as safe to eat every day (not that we do), and not a danger to cholesterol. We eat complex carbs in moderation, and a lot of healthy fats - nuts, coconut oil, olive oil, even real butter in moderation. No more "light" or "fat free" foods; they take away the fat but substitute sugar or other chemicals instead. Read the labels.
Doug had a lipid panel done two weeks ago - his cholesterol level was the best it's been in years!
We are staying inside during the cold weather and avoiding anyone who is coughing or has a sore throat. Glad our little dogs can get exercise playing inside.
So we are doing well and appreciating all our blessings, thankful for God's provision.
Love to all.
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