Stopping Treatment

I have put off writing this post.
Last Monday we had the telehealth visit with Dr. Matous, the Denver myeloma specialist who has been treating Doug for almost 13 years.
This time Dr. M said the cancer has gotten more aggressive and much more serious. He said "Nothing will be straightforward from now on."
We knew the cancer markers have been going up more than ever before. But we expected him to pull another rabbit from his hat like he has done so many times. Not this time.

He laid out options, none of them good. There is a new drug approved by the FDA but it causes uncontrollable nausea that he said he would not use until it is "tweaked".
Doug would be eligible for one clinical trial - it is in phase 1, which means research is trying to figure out what dose is safe for humans.
If Doug goes on a trial, we would have to stay in Denver for weeks or months, to be followed up closely.  Cart-T cell treatments are still in trial for myeloma and Doug does not qualify.
None of the options offers a cure, just maybe a little extra time and with side effects. Dr. M said even if something worked, the results would not last long. He was very honest with us.

Doug and I have talked about stopping treatment someday. I told him I would support him whatever he decided to do, or not do.  But we didn't know this was the day.
Dr. M asked Doug "What is your goal now?" Doug said "To live without pain."  Dr. M asked him if this means he wants to stop treatment. Doug said "Yes". Dr. M said "I don't blame you".
Doug decided to put quality of life ahead of quantity. Dr. M assured Doug that with modern medicines any pain could be well controlled. Wise man that he is, he advised us to ask our local oncologist to arrange for us to meet the hospice team. That was unexpected but actually good advice.
We were emotional after all this.

We will have one more telehealth meeting with Dr. M on July 6, so he can answer any questions we may have. He highly recommended that we get the book "Being Mortal" by Atul Gawande. Doug and I are both reading it. We found it online at the library. It was also made into a PBS Frontline TV show in 2015. It is on YouTube.

We have always known that multiple myeloma is not curable. But up to now there have been many new drugs developed, so our journey was one of remission, relapse, try a new drug, hope for another remission. Doug has had a few good remissions - the longest one lasted 18 months. During remissions we had some 'normal' times when we could almost forget cancer. The worst time was when Doug was in ICU on a ventilator right after his stem cell transplant.
 Up and down - a roller coaster.

During this journey our faith in God has been growing. He is so faithful and always ready to listen. We have been blessed and God has drawn us ever closer to Him. We can't always see things from His perspective. All this time God has surrounded us with praying friends who have been such a comfort to us.

Doug has battled this cancer for almost 13 years and he is ready to rest now. His body is worn out. I think, as the chemo drugs work out of his body, that he will have more energy and feel better for a while.

More later.

Here are partial lyrics from the hymn My Lighthouse:

In my wrestling and in my doubts
In my failures You won't walk out
Your great love will lead me through
You are the peace in my troubled sea.

In the silence, You won't let go
In the questions, Your truth will hold
You are the peace in my troubled sea.

I won't fear what tomorrow brings
With each morning I'll rise and sing
My God's love will lead me through
You are the peace in my troubled sea. 

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.