Plasmacytoma?

Yesterday we drove to Denver for our routine appointment with Doug's myeloma oncologist. We know that Doug's light chains have been steadily creeping up over the last few months. Dr. M felt there was time to wait before changing Doug to a different treatment, because he has been doing very well clinically (no symptoms other than the rising light chains). Doug had a PET/CT scan done 9-10-18 to check if there were any active lesions - none were seen. So we continued on with the "watch and wait".

Yesterday, since the light chains had climbed to 471 mg/L, Dr. M said it's time Doug thought about starting the new treatment. But he said we could afford to wait until January.
But while Dr. M was doing his physical exam on Doug, we pointed out a lump on his upper right arm. This lump was there at the September appointment, but both the myeloma doc and our nurse practitioner at home thought is was just a lipoma (benign fatty tumor). But it has been growing. Dr. M palpated it and this time he said it could be a plasmacytoma, which would be part of the myeloma (cancer of plasma cells of the blood). So Dr. M phoned a colleague of his and off we went to radiology where a core needle biopsy was done with ultrasound guidance. We are so glad it could be done the same day. We should hopefully get results tomorrow.

Dr. M says if it is a plasmacytoma, Doug will need to have it treated with radiation, and after that, he will need to start on a new treatment as soon as possible. This would be via infusion, not pills.

We don't know what tomorrow holds, but we know Who holds tomorrow!

More soon.

Endoscopy and Colonoscopy

Doug has been having some G.I. issues, so today he had an upper endoscopy and a colonoscopy. As many of you know, the prep is the worst part!
Here's what the surgeon said: "Diverticulosis throughout colon. Start using Metamucil fiber supplement. Subtle area of thickening was biopsied. Endoscopy - Inflammation of stomach and first portion of small intestine. Hiatal hernia is evident but no inflammation of esophagus. Took several biopsies."
It will take about two weeks to get the biopsy reports back. We are not too worried about that.

I can't help but wonder if all the drugs Doug has taken over the last ten years is playing a part in the unhappy G.I. tract. We'll never know.

The light chains continue to rise. The latest MM panel was done Sept 25. The Lambda light chains went from 187 to 223. Definitely high but it's been higher. When Doug relapsed in 2015, the Lambda light chains were 269. So we know a change of treatment is ahead, just not when. Doug will get another blood draw towards the end of October. We trust the myeloma specialist will take action accordingly. It's not easy to wait but we're getting plenty of practice!

The weather here is delightful. Chilly evenings and nights but no hard frost yet. Days are mostly warm and the trees are beautiful shades of yellow and gold. We hope to see snow on the mountains soon!

We celebrated our 40 year wedding anniversary last week! The date is actually Oct 2, but because of the prep, we celebrated a week early. We took a day trip to Colorado Springs, did some shopping and enjoyed lunch at our favorite Italian restaurant.

Love to all.

"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand."    Isaiah 41:10

PET Scan, no new bone lesions

Monday we drove to Denver for Doug's PET scan. Compared to the last scan in 2014, there are no new bone lesions! Very good news! But the radiologist did see some activity in a few lymph nodes. Several small nodes in his chest, and one above the collar bone. The oncologist could not feel anything there. Multiple Myeloma does not usually go to lymph nodes, so it is a mystery. And we are not going to worry about it.

The light chains are high but stable. So Doug will stay on his current regime of Pomalyst and Prednisone. No infusions yet! Doug will get blood drawn every month for the myeloma panel (to check light chains), and we will see the oncologist every two months.

It was a long 14 hour day from start to finish but a good day! No weather or traffic problems.
Praise God, and blessings to all.

Cardiac stress test, Ten years after diagnosis

Doug stopped the Ninlaro with the oncologist's approval, since it wasn't working anyway. His fatigue has lessened some.
Last Thursday we drove to Colorado Springs - a two hour drive each way - for Doug's cardiac stress test. We had to leave at 5 a.m., well before dawn. I took the first half of the drive since I can see a little better in the dark. We had quite a bit of fog. The stress test was via nuclear medicine, since he has a heart stent. We won't get results for a while.
After that, we had time to get lunch, then on to an appointment with the glaucoma specialist. Doug's eye pressure is high in the eye that got the Zen Gel stent last November. So he has to go back on prescription eye drops. The other eye is already on eye drops. Doug is losing more eyesight. We go back in two months.
We got home about 4:30 p.m.  A long day but safe travel.

Monday we will have another long day, this time in Denver, with the PET scan and oncologist appointment.

We are past the ten year mark!

Love to all.

Need PET scan, Ninlaro not working

The last blood test (MM panel) showed the Lambda light chains rose again. From 139.2 to 197.8. Normal is 5 to 26. So the Ninlaro is not improving things.
Today we went to Denver to see the Myeloma specialist. He wants Doug to have a PET  scan, to check for any new plasmacytomas.
  A Plasmacytoma is a plasma cell tumor that grows within soft tissue or in bone. Myeloma is a cancer of plasma blood cells. They originate in bone marrow.
The results of the PET scan will help the doc decide on future treatment. Whichever drug it is, we know it will be given by infusion.
The PET scan is scheduled for September 10, in Denver. Early a.m. and then we will stick around so the doc can get results and discuss with us. It might be a long day.

Denver traffic was very busy as usual, but no huge delays. We shared the driving and it was a safe trip, praise God!

Doug is still having the fatigue but he is coping well.
Meanwhile life goes on. We are looking forward to a birthday party for our son who will turn 50! How did that happen? He's a wonderful son and father of our grandkids.

Love to all.

Numb or number?

Doug is not sure if his feet are getting more numbness. It's hard to tell because he already has some peripheral neuropathy on the soles of his feet from when he was on Velcade. So is it new numbness, or the same old? When we were talking about it and said "numb or number" for the first time, it sounded so funny - like dumb or dumber! Hey, ya gotta laugh sometimes! He reported it to the oncologist office, but the doc wants Doug to stay on Ninlaro and keep a close eye on his feet. He did ask if Doug was having any problem walking, and the answer is no.

The fatigue is still there. Doug is learning how to manage it. Naps are good!

We went to Colorado Springs today for Doug's blood draw, so in 7 to 10 days we should know if the Ninlaro is having any effect.

We've had a little rain lately. Not as much as we need, but we appreciate it.

Love to all.

Ninlaro (ixazomib) started

Doug took his first dose of the Ninlaro on July 4. What a way to celebrate! He has had some nausea - Zofran works well to combat that. Yesterday, July 5, he was very fatigued. We drove to Walmart, 30 minutes away. Doug said for me to go ahead and drive. He thought he would be able to walk around the store, but after ten minutes he gave up and went to sit in the car while I shopped. Luckily it wasn't too hot. We don't have any plans to go anywhere soon, so he can rest as he needs.

So far, so good. We won't know how Ninlaro impacts his blood counts for a couple of weeks. And we won't know if it will cause problems with nerve damage yet. When he was on Velcade, it took several months before the nerve damage became evident and he had to stop the drug.

Colorado is having wildfires - one, the Weston Pass fire - is about 20 miles from our town. We can see the smoke, and yesterday the smell was very strong. It is not a danger to us; we have mountains between the fire and us. Hwy 285, the road we take to Denver, has been closed for several days.
We are praying for protection for the firefighters, and for the people who have had to evacuate their homes.

We are blessed, and we try to take nothing for granted.

Love to all.

"You will keep in perfect peace all who trust in You, whose thoughts are fixed on you! Trust in the Lord always, for the Lord God is the eternal Rock."  Isaiah 26;3-4