PET Scan results; radiation treatments begin

We got the results of the PET/CT scan that was done 12-19-18. It is a lot of medical lingo but I'll try to simplify it.

• There is a lesion in the left mastoid sinus that is suspicious for a malignant bone lesion or could be an inflammatory mass. This is the first time for this finding. This is not being treated by radiation but hopefully the chemo will take care of it. 
• Enlarging soft tissue nodule in the right upper arm. This is being treated now with radiation. 
• Increasing hypermetabolic  adenopathy (cancer) in the area around the right collar bone extending into the right axilla (armpit). This is also being treated now.
• Multiple old bone lesions that are unchanged. 

Looking on the bright side, there is no evidence of malignancy (cancer) in the liver, spleen, pancreas, adrenal glands or kidneys. 

I got to watch Doug's treatment today. I'm a retired radiation therapist so the techs gave me the royal treatment and let me see everything.  The machines have advanced quite a bit since I retired in 2005 but the basics are the same. It is amazing what the combination of computerization, medical expertise and dedicated highly trained radiation therapists can do. In many cases cures are achieved. In Doug's case, the aim is palliation (control of symptoms), not cure. Thus he will get a lower dose than some. And far fewer side effects.

Because of the New Year holiday, we don't go back for treatment until Wednesday January 2. We will enjoy a few days at home. 

We had a safe trip home today, praise God. And a hot meal was delivered by the dear friends who are taking care of our dogs. We have so much to be thankful for!

Love to all.

But as for me, I will sing about your power. Each morning I will sing with joy about your unfailing love. For You have been my refuge, a place of safety when I am in distress. 

Psalm 59: 16

Radiation Oncology consult

We just got home today from the Shaw Cancer Center in Edwards CO. Great place. I have found out that I cannot post to this blog from my iPad while we are gone. So I will have to wait until we get home on the weekends to update on our desktop computer.

Tuesday 12-18-18 Doug had the radiation oncology consult with Dr. Patti Hardenbergh. When we last saw Dr. Matous in Denver on 11-28-18, he found that  the mass on Doug's upper right arm is a plasmacytoma (myeloma cancer cells). At that time he noted there was a small palpable node on Doug's supraclavicular area (above the collar bone). Dr. Matous said the arm mass would need to have radiation because of its size, but the SC node would be taken care of by the new chemo (which hasn't started yet). But by the time Dr. Hardenbergh saw Doug, the SC node had grown quite a lot! So she is going to treat both the arm and SC area. That's what I was hoping.
Later the same day, Doug had part of the treatment planning done - one of the radiation therapists made a 'mold' to hold Doug in position during treatment. It is made of special plastic mesh that is heated and stretched over the patient. When it cools, it becomes solid.  At this time, a planning CT was done, which is not for diagnostic purposes; it's just part of the preparation for treatment so accurate measurements can be done.

The next day, Wednesday 12-19-18, Doug had the PET/CT done. It almost didn't happen - the truck that delivers the radioactive isotope for the PET was stuck on the other side of Vail pass which was closed due to weather! We got a phone call letting us know there was a delay, and the tech said that if the isotope didn't get through, the scan would be delayed until Friday. We prayed it would get through and a couple of hours later, it did.
This scan will show the extent of any new lesions that are not visible. We won't know the results until we go back the day after Christmas.

I'm feeling much better now that things are in motion instead of waiting to get appointments.

Verse for the day:
"Bless the Lord, who is my rock. He gives me strength for war and skill for battle. He is my loving ally and my fortress, my tower of safety, my deliverer. He stands before me as a shield, and I take refuge in him."   Psalm 144:1-2

Still waiting

Our appointment for the radiation oncology consult got pushed back a week. The doc had to lighten her schedule because she is recovering from some orthopedic surgery.
So now we have an appointment for next Tuesday December 18 to see her. We will stay overnight at the outpatient residence Jack's Place and Doug will have a PET/CT scan the following day. Then we go home and wait for a phone call telling us when to come back. I hope treatment is not delayed too much because of Christmas week holiday.

Doug now has to wear a compression stocking on his left leg. It seems to be helping the swelling. There is an art to putting those things on!

Last week I had become quite anxious because of all the delays. I had to "Let go, and let God." Now I can say that we both have "the Peace that surpasses all understanding".

Verse for today: 
"May the Lord of peace himself give you his peace at all times and in every situation. The Lord be with you all."  2 Thessalonians 3:16

Appointment for Radiation

We have been waiting to get an appointment for radiation oncology. It seems to take forever when I want things to happen soon! Doug has been very calm; I have been very impatient. Waiting is hard!

We are to see the radiation oncology Dr. December 11. The next day Doug is scheduled for a planning CT for radiation and a PET/CT for restaging the cancer in preparation for the chemo. It is a huge relief to know we have a plan of action. Now I am calm too. The radiation treatments will be at the Shaw Cancer Center in Edwards - we will have to travel over Vail pass several times, which can be difficult and dangerous in winter weather. We have a lot of people praying for safe travel.

I am concerned that Doug's left leg/foot is more swollen. We bought him a pair of larger shoes today.

Today's verse:

Show me the right path, O Lord,
Point out the road for me to follow. 
Lead me by your truth and teach me,
for you are the God who saves me. 
All day long I put my hope in You. 
Psalm 25:4-5

Love to all.

Yes it IS Plasmacytoma

We got the biopsy report yesterday - it is definitely a plasmacytoma.
Dr. Matous, in Denver, has approved the local oncologist Dr. O to give the infusions. In fact, he knows her, so that helps a lot. Dr O will be contacting the radiation oncologist at Shaw Cancer Center in Edwards CO. We would really like to get the radiation treatments started as soon as possible since Dr. M says radiation needs to come before the chemo infusions. Hoping to hear Monday about an appointment.

Love to all.

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

Another RELAPSE - Starting Ninlaro soon

Another relapse.

After months of watching Doug's myeloma blood panel results climbing, the oncologist is certain he is relapsing again. So he is adding a new drug to what Doug is already taking. Ixazomib (brand name Ninlaro) is a capsule - the first oral proteasome inhibitor. The good thing is that Doug won't be needing infusions yet.
There are a few possible side effects to watch for:
1. Low blood counts
2. More G.I. upsets
3. Nausea
4. Diarrhea
5. Nerve damage

He will be monitored closely for the nerve damage. Doug already has peripheral nerve damage in his feet from a related drug, Velcade. If he starts to feel any tingling, pins and needles, pain or numbness, the doc said to immediately report it. This drug will be stopped if the symptoms are severe. Nerve damage is not reversible.

It will take a couple of weeks before he can start the ixazomib - gotta get insurance approval first. It is an approved drug, so approval shouldn't be a problem, just takes time.

So Doug's drug regime will be: Pomalyst, cytoxan, prednisone, ixazomib. All pills.

Periods of remission, followed by relapses, are standard for Multiple Myeloma.

Doug has had some good remissions. In fact, he feels pretty good right now. If it wasn't for the blood tests, we wouldn't know he is relapsing.
He has been doing a lot of yard work this summer. We have planted yarrow, an aspen tree, and silver lace vines. He has dug all the holes - which in this area means dealing with lots of rocks! Some of the rocks he has dug up are melon size.

In August, it will be 10 years since diagnosis. Amazing. We've dealt with some hard things but we have so very many things we are thankful for.

We have friends who have life threatening medical conditions - with no treatment available. We are very thankful there is treatment, even though as yet no cure, for myeloma.

Love to all.