Two months ago, our myeloma specialist saw the light chain numbers were drifting upwards. So he added cytoxan and prednisone back to the pomalyst; he was thinking a 'tweak' would be enough. But it wasn't. The bad numbers continue to climb slowly - Doug is headed out of remission. This will be relapse #5. So there will be a change to different drugs, but not yet.
Doug's glaucoma has not been controlled, although he has already had two surgeries and multiple kinds of eye drops. Vision has been lost. So we were referred to a glaucoma specialist in Colorado Springs. After a consult, he offered more surgery as an option. We decided to go ahead and have the eye surgeries, a different kind for each eye. The left eye got a newer kind of stent, and the right eye (which already has two stents) underwent a diode laser procedure. During this healing process, Doug's vision is very blurry. He can't even read the big F on the eye chart. The doc said this is fairly common and he expects it to get better. No telling how fast. So he can't drive.
So I am doing all the driving - which is okay, but I have a history of getting drowsy when doing highway driving. Once years ago, I did fall asleep and had a near accident. We are making lots of medical trips to Denver and the Springs - not my idea of fun. But the good Lord is protecting us. My tools for staying alert are praying, caffeine pills (I don't drink coffee) and listening to audiobooks. It's working so far.
Once Doug's eyes are healed, the oncologist will decide on what treatment for the myeloma. Fortunately for us, there are three good options - drugs that were not available a few years ago.
This leg of the journey is not that different from what we've experienced before, but it feels stressful.
We are blessed with excellent medical care, and people who pray for us.
"Trust God from the bottom of your heart; don't try to figure out everything on your own. Listen for God's voice in everything you do, everywhere you go; he's the one who will keep you on track."
Proverbs 3:5-6 The Message
Saturday, December 2, 2017
Friday, October 6, 2017
9 years! Cytoxan and pred added back to Pom
Dr. M's nurse navigator called. He says Doug is slowly headed into a relapse if we don't do something.
He wants to keep Doug on Pomalyst but add Cytoxan and prednisone back. This is the drug combo PCP he was put on in October 2015. It put him back into remission and Doug and went on Pomalyst MAINTENANCE (no cytoxan and lower dose of Pom) in April 2016. The prednisone was stopped in June 2017.2
Doug has been in a good remission for 20 months. We hope the addition of Cytoxan and prednisone will keep him in remission.
It has been 9 years on this Multiple Myeloma journey. It's been a bumpy road at times - once after the stem cell transplant in 2009, I thought the road had been washed out totally. This time it feels more like we see a sign "Slow Down - Road Work Ahead". Hopefully just a minor slowdown with no stops.
Love to all.
"Give thanks to the Lord, for he is good! His faithful love endures forever." Ps 136:1
He wants to keep Doug on Pomalyst but add Cytoxan and prednisone back. This is the drug combo PCP he was put on in October 2015. It put him back into remission and Doug and went on Pomalyst MAINTENANCE (no cytoxan and lower dose of Pom) in April 2016. The prednisone was stopped in June 2017.2
Doug has been in a good remission for 20 months. We hope the addition of Cytoxan and prednisone will keep him in remission.
It has been 9 years on this Multiple Myeloma journey. It's been a bumpy road at times - once after the stem cell transplant in 2009, I thought the road had been washed out totally. This time it feels more like we see a sign "Slow Down - Road Work Ahead". Hopefully just a minor slowdown with no stops.
Love to all.
"Give thanks to the Lord, for he is good! His faithful love endures forever." Ps 136:1
Friday, September 22, 2017
Early signs of relapse?
Went to Denver yesterday to see the myeloma specialist. We saw his nurse practitioner this time because the doc is in France. He goes all over to myeloma conferences - keeps him up to date. We knew he would be gone. His N.P. is wonderful - Dr. M says she knows as much as he does. That might be a stretch, but she's very good.
Doug's Lambda light chains are up again, but they are rising slowly. In May they were 35.47; July 55.1; now 71.5. (Normal range is 5.71 to 26.30.) To put it in perspective, when he had his last relapse they were 269. So it seems he is probably heading for another relapse. Because the numbers are rising so slowly, and because he is in pretty good shape otherwise, the N.P. decided not to change anything right now. He will get another myeloma panel in two months - "more data" as she put it. We think this is a reasonable decision; in fact we anticipated it.
The N.P. said they might not take Doug off his current therapy Pomalyst; but rather add prednisone back and possibly cytoxan.
Doug is feeling well except for a flare up of sciatica. The pain is pretty bad and goes down his left leg. It comes and goes - he didn't have it for the last couple of months. We were able to go on walks together. Not now. In the past he has tried physical therapy, which did help some. Today he has an appointment with a female chiropractor who is new in town. A friend of a friend said she helped him with sciatica. The myeloma N.P. cautioned Doug to make sure the chiro knows his history and "tell her to be gentle". She said chiropractic can cause damage to myeloma patients. Good to know! He wants to see her anyway.
Doug's left leg is still quite swollen, but ultrasound shows no clots. He had a heart echo done which is okay. The nephrologist says "we might never know" the cause. Something to keep an eye on, but not worry over.
That's all for now. Attitudes good here.
Doug's Lambda light chains are up again, but they are rising slowly. In May they were 35.47; July 55.1; now 71.5. (Normal range is 5.71 to 26.30.) To put it in perspective, when he had his last relapse they were 269. So it seems he is probably heading for another relapse. Because the numbers are rising so slowly, and because he is in pretty good shape otherwise, the N.P. decided not to change anything right now. He will get another myeloma panel in two months - "more data" as she put it. We think this is a reasonable decision; in fact we anticipated it.
The N.P. said they might not take Doug off his current therapy Pomalyst; but rather add prednisone back and possibly cytoxan.
Doug is feeling well except for a flare up of sciatica. The pain is pretty bad and goes down his left leg. It comes and goes - he didn't have it for the last couple of months. We were able to go on walks together. Not now. In the past he has tried physical therapy, which did help some. Today he has an appointment with a female chiropractor who is new in town. A friend of a friend said she helped him with sciatica. The myeloma N.P. cautioned Doug to make sure the chiro knows his history and "tell her to be gentle". She said chiropractic can cause damage to myeloma patients. Good to know! He wants to see her anyway.
Doug's left leg is still quite swollen, but ultrasound shows no clots. He had a heart echo done which is okay. The nephrologist says "we might never know" the cause. Something to keep an eye on, but not worry over.
That's all for now. Attitudes good here.
Thursday, July 27, 2017
Light chains up; Swollen leg
The Lambda light chains have risen, and the Kappa have gone down. Ratio is still within normal limits but this is not what we want to see in the lab work. Dr. M, our Denver myeloma specialist, says that since Doug went completely off prednisone in June, this could be just a "reset" and it could level out. Otherwise, this could be early sign of a relapse. We will have to wait two months until the next myeloma panel and see what happens. We've been around the block a few times with myeloma, so we are not overly alarmed. But we are very aware.
Doug has had slight swelling in his left leg for over a year. It has been noted but didn't alarm any of the docs. Now in the past few weeks, it has gotten much worse. The whole leg is swollen, from groin to ankle, but no pain. Yesterday Dr. M ordered an ultrasound exam to check for DVT; Pomalyst can cause blood clots, necessitating blood thinners. We were fortunate to get that test done while we were in Denver. Negative results. So we don't know the cause of the swelling but are glad it is not a DVT (deep venous thrombosis) which can be dangerous. Doug saw his cardiologist two days before the oncologist; cardiologist has ordered a study of the arteries in both legs but that requires a special tech to perform the exam and that person can't come until August 11. So more waiting.
The cardiologist says Doug's heart sounds good, but because of the swelling, he also wanted to get an echocardiogram. That was scheduled for today but we had to cancel. Last night Doug developed a bad cough and by 7:00 p.m he had a fever of 101.5. This morning we cancelled the echo and went to see our local nurse practitioner. She diagnosed bronchitis and prescribed antibiotics, codeine cough syrup, tylenol. His lungs sound clear. So he's been resting today and feeling lousy.
My sister and brother in law were supposed to come visit us from TN on Friday. This was going to be a side trip on their way to Seattle to visit their son. Under the circumstances, they are not coming to our house. They will be in the area for a week or so, so we hope Doug feels well enough to meet up with them before they leave for Seattle.
So a few bumps in the road on our myeloma journey. We will cope. We have a faithful God who is always with us.
Love to all.
Doug has had slight swelling in his left leg for over a year. It has been noted but didn't alarm any of the docs. Now in the past few weeks, it has gotten much worse. The whole leg is swollen, from groin to ankle, but no pain. Yesterday Dr. M ordered an ultrasound exam to check for DVT; Pomalyst can cause blood clots, necessitating blood thinners. We were fortunate to get that test done while we were in Denver. Negative results. So we don't know the cause of the swelling but are glad it is not a DVT (deep venous thrombosis) which can be dangerous. Doug saw his cardiologist two days before the oncologist; cardiologist has ordered a study of the arteries in both legs but that requires a special tech to perform the exam and that person can't come until August 11. So more waiting.
The cardiologist says Doug's heart sounds good, but because of the swelling, he also wanted to get an echocardiogram. That was scheduled for today but we had to cancel. Last night Doug developed a bad cough and by 7:00 p.m he had a fever of 101.5. This morning we cancelled the echo and went to see our local nurse practitioner. She diagnosed bronchitis and prescribed antibiotics, codeine cough syrup, tylenol. His lungs sound clear. So he's been resting today and feeling lousy.
My sister and brother in law were supposed to come visit us from TN on Friday. This was going to be a side trip on their way to Seattle to visit their son. Under the circumstances, they are not coming to our house. They will be in the area for a week or so, so we hope Doug feels well enough to meet up with them before they leave for Seattle.
So a few bumps in the road on our myeloma journey. We will cope. We have a faithful God who is always with us.
Love to all.
Tuesday, May 30, 2017
Still in Remission
Doug had a good report from the Denver oncologist - still in remission! This remission on Pomalyst has been going strong for 17 months now, and the side effects have been tolerable. We are so blessed!
We saw the oncologist's nurse practitioner this time. The onco doc is on his annual bicycling vacation in Italy. He works hard and plays hard. Keeps him from burning out.
His NP is excellent and has been with him a long time. She agrees that Doug's hip/leg pain is sciatica. She recommended physical therapy, and walking as much as he can tolerate.
Doug's Lambda light chains rose, but so did the Kappa - as long as the ratio is within normal limits it does NOT mean a recurrence. The NP says if both kinds of light chains rise, it means the kidneys are not filtering as well. But the lab results of kidney function were normal. Just something to watch.
Doug has been taking Amytriptyline for sleep the past several years. But it stopped working for him, so now he is taking 1 mg lorazepam for sleep.
Doug took his last prednisone today, so we went out to lunch to celebrate. His glucose levels have been good. Glaucoma seems to be holding reasonably steady.
Next Denver appointment will be in July.
Our spring has been very chilly and windy, but the past few days have been warm and sunny. Just gorgeous. We planted petunias and geraniums in big pots in front of the house - now we have to keep deer repellent spray on them. The backyard is fenced so we can plant as much as we want to take care of.
We are praising God for his grace and mercy!
Love to all.
We saw the oncologist's nurse practitioner this time. The onco doc is on his annual bicycling vacation in Italy. He works hard and plays hard. Keeps him from burning out.
His NP is excellent and has been with him a long time. She agrees that Doug's hip/leg pain is sciatica. She recommended physical therapy, and walking as much as he can tolerate.
Doug's Lambda light chains rose, but so did the Kappa - as long as the ratio is within normal limits it does NOT mean a recurrence. The NP says if both kinds of light chains rise, it means the kidneys are not filtering as well. But the lab results of kidney function were normal. Just something to watch.
Doug has been taking Amytriptyline for sleep the past several years. But it stopped working for him, so now he is taking 1 mg lorazepam for sleep.
Doug took his last prednisone today, so we went out to lunch to celebrate. His glucose levels have been good. Glaucoma seems to be holding reasonably steady.
Next Denver appointment will be in July.
Our spring has been very chilly and windy, but the past few days have been warm and sunny. Just gorgeous. We planted petunias and geraniums in big pots in front of the house - now we have to keep deer repellent spray on them. The backyard is fenced so we can plant as much as we want to take care of.
We are praising God for his grace and mercy!
Love to all.
Saturday, March 25, 2017
Remission holding! Tapering off Pred
I haven't posted lately - apologies to all who check this blog. But you really can tell things are going along okay when I don't post. Doug is doing okay but I thought it was time to update!
We went to Denver two days ago for the usual checkup. Dr. M is very pleased that Doug is doing so well on Pomalyst. He said he wishes he had a way of knowing ahead of time which drug will perform best for each patient - before putting them on a new drug. Right now it is basically a matter of trying a drug; then if the drug doesn't work or causes adverse side effects, switching to a different drug. He would have bypassed Velcade (caused peripheral neuropathy in Doug) and gone right to Pomalyst which is effective and Doug is tolerating so well. The good part is there are quite a few drugs now available. And trials have shown which combinations of drugs (that were used alone when they first came out) are superior. Maybe in the future there will be a way of knowing which is best for each individual, before putting a person on a regime. Anyway, the future is a lot brighter for myeloma patients than it was back in 2008!
Pharmaceutical companies love to develop drugs that do not cure, but must be taken long term to prolong survival. I don't think cures are as good financially for the shareholders. Don't mean to sound like sour grapes -- we have SO much to be thankful for. Dr. M did mention that many of the myeloma drugs are less expensive in other countries.
Because Doug is doing well, with this remission so far at 1.5 years, he is tapering Doug off the prednisone. He explained it has to be done slowly, as the pred supresses the adrenal glands. Now the adrenals need time to "wake up" and get to work again. By June, Doug will be completely off pred.
The main reason the doc is taking Doug off pred is because it is affecting his blood sugar more. The latest A1C was 7.9 which is too high. Also, pred can affect vision, and Doug's vision problems are gradually getting worse.
Doug will continue Pomalyst at 1 mg a day.
Doug asked Dr. M if it is okay to take curcumin. He said yes, to go ahead. There is some evidence that shows curcumin may benefit myeloma patients, as well as help with arthritis and other conditions. Doug's left hip continues to cause pain and prevent him from walking as much as he should. This is the hip that had radiation in 2011 and now shows arthritis damage from that.
We had a good visit with our son, daughter in law, and grandkids before heading home.
Praise God, He has been so faithful to us. And we will trust in Him no matter what.
Love to all.
P.S. The best book I've read recently is The Broken Way by Ann Voskamp. So good.
We went to Denver two days ago for the usual checkup. Dr. M is very pleased that Doug is doing so well on Pomalyst. He said he wishes he had a way of knowing ahead of time which drug will perform best for each patient - before putting them on a new drug. Right now it is basically a matter of trying a drug; then if the drug doesn't work or causes adverse side effects, switching to a different drug. He would have bypassed Velcade (caused peripheral neuropathy in Doug) and gone right to Pomalyst which is effective and Doug is tolerating so well. The good part is there are quite a few drugs now available. And trials have shown which combinations of drugs (that were used alone when they first came out) are superior. Maybe in the future there will be a way of knowing which is best for each individual, before putting a person on a regime. Anyway, the future is a lot brighter for myeloma patients than it was back in 2008!
Pharmaceutical companies love to develop drugs that do not cure, but must be taken long term to prolong survival. I don't think cures are as good financially for the shareholders. Don't mean to sound like sour grapes -- we have SO much to be thankful for. Dr. M did mention that many of the myeloma drugs are less expensive in other countries.
Because Doug is doing well, with this remission so far at 1.5 years, he is tapering Doug off the prednisone. He explained it has to be done slowly, as the pred supresses the adrenal glands. Now the adrenals need time to "wake up" and get to work again. By June, Doug will be completely off pred.
The main reason the doc is taking Doug off pred is because it is affecting his blood sugar more. The latest A1C was 7.9 which is too high. Also, pred can affect vision, and Doug's vision problems are gradually getting worse.
Doug will continue Pomalyst at 1 mg a day.
Doug asked Dr. M if it is okay to take curcumin. He said yes, to go ahead. There is some evidence that shows curcumin may benefit myeloma patients, as well as help with arthritis and other conditions. Doug's left hip continues to cause pain and prevent him from walking as much as he should. This is the hip that had radiation in 2011 and now shows arthritis damage from that.
We had a good visit with our son, daughter in law, and grandkids before heading home.
Praise God, He has been so faithful to us. And we will trust in Him no matter what.
Love to all.
P.S. The best book I've read recently is The Broken Way by Ann Voskamp. So good.
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