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.

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.

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.

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.

Saturday, August 27, 2016

8th Anniversary! Doing well.

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

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'.

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

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.