Not good news

This will be a short post.

Doug just got the results (on the patient portal) of the myeloma panel that was drawn June 11. 

 The Lambda light chains (cancer marker) have more than doubled since May. 

April was 29.0

May was 41.2

June is 92.6

Normal range is .5700 to 2.63

That means the Kyprolis is not working. 

We have not talked to either of the oncologists yet. 

We do have an appointment for tomorrow with the oncology NP who we like a lot. We could get in to see her faster than Dr. A the oncologist. 

We made the appointment so she can look at the lump on the side of Doug's head that has grown rapidly over the last couple of weeks. Doug had thought sure it was a cyst - so he didn't show it to me until it got big. 

There will be some kind of new plan - either add another drug to the Kyprolis or change the treatment altogether to something new. The last three treatments have not worked. 

We still have the telehealth (virtual) appointment with Dr Matous for this coming Monday. 

We are of course feeling down, but not shocked. Not much shocks us anymore. 

Love to all.

Quote: 

"We humans spend a good bit of our lives in places where it's too dark for knowledge and only the candle of faith can light our way."   W. Lee Warren M.D.

Reduced dose Kyprolis

On May 28 (cycle 2, day 1), Dr. M and Dr. A agreed to reduce the Kyprolis dose to 60 mg because of Doug's fatigue and edema. Ideally, he would be receiving 100 mg. How this reduced dose will affect things is unknown as of now. Doug still has fatigue and edema (worse on Kyprolis days) but these side effects are manageable at the lower dose.

Doug's myeloma panel that was done on May 14 showed a big jump in Lambda light chains from 29 mg/dL to 41.2. We are  hoping that was just because it was done not long after Doug started Kyprolis. He had a blood draw for another myeloma panel last Thursday but we don't know results yet.

The plasmacytoma lump has not grown - that is very good!

We have a Zoom visit with Dr. Matous in Denver scheduled for June 22. We are looking forward to that. The Zoom online visits are working out well for us.

Doug continues to have twice a week infusions. We actually look forward to seeing our favorite nurses.

Love to all.

Here is a selection from Jesus Calling by Sarah Young:

"Be still in the light of My Presence while I communicate Love to you. There is no force in the universe as powerful as My Love. You are constantly aware of limitations - your own and others'. But there is no limit to My Love; it fills all of space, time, and eternity. 

Now you see through a glass, darkly, but someday you will see Me face to Face. Then you will be able to experience fully how wide and long and high and deep is My Love for you. If you were to experience that now, you would be overwhelmed to the point of feeling crushed. But you have an eternity ahead of you, absolutely guaranteed, during which you can enjoy My Presence in unrestricted ecstasy. For now, the knowledge of My loving Presence is sufficient to carry you through each day."

For now we see through a glass, darkly; but then face to face: now I know in part; but then I shall know even as also I am known.  1 Corinthians 13:12

I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep in the love of Christ, and to know this love that surpasses knowledge - that you may be filled to the measure of all the fullness of God.  Ephesians 3:16-19

Final path report from Mayo

We just saw the final pathology report on the lump that was biopsied on May 15.
Mayo says it is a plasmacytoma! There was a question of possible lymphoma, which would be a second cancer, so this is the best of two possibilities.

Part of the Mayo report reads:

"The neoplastic cells are positive for CD38 and CD138 and contain monotypic cytoplasmic lambda immunoglobulin light chains." 

The daratumumab that Doug was on for 15 months, starting January 2019, targets CD38. That obviously was not working!

Dr. M, the Denver myeloma specialist, says the plasmacytoma was present but not visible yet when Doug began the Kyprolis. So rather than jump into radiation on the lump, we will wait and hope that it disappears with the Kyprolis treatment.

Doug's leg/feet swelling is a bit worse - noticeable but not too dramatic. It is one of the side effects of Kyprolis. We continue to keep an eye on it. 

The most common Kyprolis side effects are:

Low red blood cell count

Tiredness (fatigue)

Low platelets

Nausea

Fever

Trouble breathing

Diarrhea

Headache

Cough

Swelling of the lower legs or hands

So it could be worse! 

"This is the day the Lord has made. Let us be glad and rejoice in it."

Psalm 118:24

Love to all.

plasmacytoma vs. lymphoma?

The biopsy of the lump on Doug's right anterior chest wall (near the port) was done 5-15-20.
On 5-20-20 we got the pathology report from HRRMC. It said: "Favor soft tissue involvement by plasmacytoma, versus large B-cell lymphoma. Mayo pathology consult pending."  We were surprised to read that! Based on appearance and Doug's history of plasmacytomas, we, including the oncologist, were sure it is a plasmacytoma. We still do not have the final report from Mayo. The NP at the infusion clinic says it would be "very unlikely" to be lymphoma. We want to see that report!

When Doug first started the Kyprolis, Cycle 1, day 1 & 2, the protocol called for a reduced dose of 40 mg.
The next week, days 8 & 9, per protocol the dose was increased to 100 mg.
Then Doug had the weight gain and edema of his legs ankles and feet. So the following week, days 15 & 16, the oncologist reduced the dose back down to 40mg out of caution.
The next week was his rest week - no chemo - and he felt better with more energy. Both the Denver specialist and the local oncologist agreed that we need to get the dose back up.
So yesterday and today, cycle 2, days 1 & 2, the dose went up to 60 mg. We are watching closely for edema and weight gain. We'd like, if possible, to go up to 100 mg which is what it should be per protocol. But only if he can tolerate that dose.

Yesterday the nurse could not get the port to draw - meaning blood would not come out, but sterile saline would go in. That happens occasionally, and usually changing position, raising the arm, laying him way back in the chair, or other movement, will do it. Not this time. So Doug had to go to radiology for a 'dye study'. That showed the dye going into the port and going where it should go in the body. Good! Sometimes a small clot or fibrin sheath will form at the end of the catheter tip and act kind of like a one-way valve. The dye study showed it was safe to use the port for the chemo. We were glad of that. After yesterday's chemo was finished, the nurse injected a tiny bit of a drug (cathflow) that acts as a 'clot buster'. This morning it was sucked out, then the port was flushed and it it like new.

Yesterday Doug weighed 162, this morning 164. We will keep checking it as well as watching out for increased edema.

We both enjoyed Doug's week off treatment. He was able to walk around the loop with me and the dogs, and drive our new car that has all the new safety features.

We are depending on God for endurance, strength and peace. We appreciate all of you who pray for us!

This is one of my go-to Bible verses:

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

Plasmacytoma?

This morning as we were getting ready to leave for infusion, Doug noticed a bump just above his port. (On his chest). It was small, but it wasn't there yesterday. We told the nurse, who told the oncologist - and she came to see it; thought it looked suspicious. The oncologist called a surgeon who has her office just down the hall from oncology. The surgeon said she'd like to biopsy it. Luckily she had a spot open after Doug finished his Kyprolis infusion.
I was allowed to be in the room (in the surgeon's office) while she did an ultrasound and then biopsied the lump. When she got tissue out, she said it looks like a plasmacytoma to her. Of course it will take a few days to get the pathology report back because it will be sent out for an outside opinion.

In December of 2018 Doug had several plasmacytomas and needed three weeks of radiation in Edwards CO.
A plasmacytoma is a group of myeloma cancer cells that grow outside the usual area. Multiple Myeloma is a cancer of the plasma cells of the blood. The myeloma lives in the bone marrow and thus in the bones. Extramedullary plasmacytoma consists of cells that are aggressive and migrate to soft tissue. This is not a good thing. To have it happen while on a new drug is also not a good sign.

 We are thankful it was caught early and biopsied early. We hope Doug will not need radiation, but if he does, at least it is not winter like last time when we had to drive back and forth on wintry roads.

I like those WWII signs that say "Keep Calm and Carry On". That is what we will do.

Here is a quote I found that is appropriate:

"Father, I am here waiting for You. My heart and hands are open to Your purposes and plans for my life. Give me the patience I so desperately need and lead me in my waiting. Though my feelings may not be there just yet, I believe You are moving on my behalf right this minute, protecting, defending, preparing, providing. Give me grace to keep trusting in You in the face of the gale force winds of doubt that are blowing all around me. Anchor my heart in You. Amen"   Louie Giglio

Peripheral edema - Kyprolis cycle 1

On May 7 Doug had his first full strength dose of Kyprolis. His weight was good at 160.
All his lab work came back okay:
WBC    7.6
HGB     12.4
PLT       209
ANC     7.1
Creatinine   1.1
Sodium 136

The NP (nurse practitioner) came to see how he was doing. He told her 'no problems'.

The next day, Friday 5-8-20, he weighed in at 162. No big deal.
He had a full strength dose of Kyprolis with the usual fluids.
On Thursdays the lab work is done; on Fridays lab work is not done.

Friday evening at home, we noticed his leg swelling was a little worse than usual. We checked his weight - it was 165. Up 3 pounds since morning. He felt fine.
Saturday his weight was 166.2. His feet ankles and lower legs on both sides were puffy. He still felt fine, no other problems except fatigue. (For the medical folks - I checked and it was not pitting edema.)
Sunday his weight started to go down - 165.1
Monday he weighed 162.4 and the edema was quite a bit less.
Tuesday's weight was 161. Just the 'normal' swelling on left side.
I called to report all this so the doc would have a heads-up before Doug went to infusion today, May 14.

Today Doug weighed 159, a good number for him.   BP was 114/71.
His lab work was:
WBC 9.0
HGB 12.3
ANC  8.3
PLT   107
Creatinine 1.3
BUN     32
Sodium 134

Dr. A came to see Doug. Peripheral edema is one of the possible side effects of Kyprolis. But she was a little surprised the edema came back down so quickly. She made a phone call to Dr. Matous in Denver to get his opinion. Meanwhile she ordered an EKG to be done before infusion. That didn't show much. His heart sounded okay to her.
Dr. A told us she thought the Kyprolis dose needed to be lowered back down to the starting dose on days 1 and 2, which was 20 mg (calculated by a formula for his weight). Dr. Matous called her back and he agreed with Dr. A to go ahead with the lower dose and also cut his saline fluids in half for now.
He tolerated the infusion well, no drama.
Doug will go back tomorrow, Friday, and then he will be off for one week. Three weeks on, one week off.
When Doug resumes treatment on May 28, that will be the start of cycle 2. Dr. Matous wants Doug to get an intermediate Kyprolis dose; higher than he got today. He says if we have to keep the Kyprolis dose at the very low level, then he would probably need to add another drug to the mix. And he really would prefer not to do that.

We will continue to monitor Doug's weight and leg/feet swelling. Dr A says to call her on her cell phone if he has any more edema/weight gain.

Doug is also supposed to have another echocardiogram before cycle 2, to be compared with the baseline one he had before Kyprolis started.

We are aware there could be complications ahead, but we try not to focus on that.

Love to all.

Today's verse:
"God is your refuge, and his everlasting arms are under you."  
Deuteronomy 33:27

Kyprolis - 1st and 2nd infusions

Last Thursday April 30 Doug had his first Kyprolis infusion.
Cycle 1, day 1. Each cycle is 28 days.
He weighed 160 - very good. BP was 108/69.

After the nurse accessed his port, she drew blood to send to the lab. While we were waiting for results, she started 500 ml of sterile saline; this hydration will be given before each infusion, to help protect organs.
Doug still has to take 20 mg dexamethasone with every Kyprolis infusion.

The parameters to 'qualify' for Kyprolis infusion are a little different than for the daratumumab.
This is for the medical nerds out there:
ANC needs to be greater than 1500
HGB greater than 8.5
PLT greater than 100
Total bilirubin  less than 1.2
No signs or symptoms of any herpes or varicella virus infection
Serum glucose less than 200
BP less than 150/90
No signs or symptoms of cardiac dysfunction
No signs or symptoms of pulmonary toxicity
If any of these are not within limits, the oncologist will withhold treatment or adjust medications. Or in some cases adjust the parameters.

Doug had no reactions to the infusion. Yay! Some of the possible side effects will show up only over time.

All his blood work was good, except sodium was a little low. Nurse said eat more salt - I was surprised by that.
Here are the counts for day 1:
WBC   6.7
HGB    12.4
PLT      330
ANC    5.4
GLU    122
CREAT  1.1
Magnesium   2.0
Sodium   134

The oncology pharmacist came down to go over the drugs with Doug. She looks much too young to have a doctorate in pharmacology! She's cute and she and Doug have a nice relationship developing. I can't stress enough how much we enjoy all the professionals in the infusion clinic.

It feels good to have the first two Kyprolis infusions over with. Doug is doing well. In the late afternoon, after we were home for a couple hours, the nurse called to make sure Doug was doing okay. An hour later the pharmacist called too!
Doug has slight nausea and of course the ever-present fatigue.

Friday, day 2, no blood work was needed. Doug just had the fluids and then Kyprolis. Kyprolis infusion is only 30 minutes. Much faster than the dara was.

The Kyprolis dose was reduced for the first two days. Next week it will be higher.

Thank you to all the people who are holding us up in prayer!
Love to all.