Very low ANC, Thankfulness

We were able to be with family for Thanksgiving; the weather cooperated for us to drive to Highlands Ranch, home of our son and daughter in law - 2.5 hours from us. We've had some winter storms so we were fortunate to have the one day of good travel conditions. 4 of 5 grandkids were there, all but our oldest who lives in eastern Nebraska. We had a wonderful time, laughing, enjoying the kids and eating. And eating. Yum.  And we got home before dark!

Today Doug had his infusion, cycle 11 which means 11 months on this daratumumab treatment. More snow was falling on our drive to Salida, some low visibility but roads were passable.

Doug's ANC (absolute neutrophil count) was 0.7 - too low to qualify for treatment. Minimum ANC for treatment is 1.0. The neutrophils are part of the white blood cells - very important part of the immune system.
We thought Doug would not be able to get his infusion, but the nurse called Dr. A, the oncologist, as is required.
 Dr. A consulted by phone with the Denver specialist and they came up with a plan. Doug got the dara infusion, but he is not to take his Pomalyst pills for a week. That sounded good to us. So nice to have the two docs working together.

This week Doug's important blood counts were:

• WBC          2.6           (normal is 4.5 to 10.0)
• HGB         11.6            (    "         14 to 18)
• PLT           135             (    "       130 to 400)
• ANC         0.7              (     "       1.8 to 8.3)

Gammaglobulins very low as they have been.

We have much to be thankful for:
Despite low immune system, Doug has not had an infection. Of course we are being careful.
Safe travel on Thanksgiving and today.
Two oncologists who work together on Doug's case.
Great infusion nurses.
Our family.
Wonderful neighbors who clear our driveway.
Friends who pray for us.

Too many blessings to list!

Love to all.

"Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord."    Psalm 27:14

Denver specialist

Tuesday we went to Denver for a scheduled appointment with Dr. Matous, Doug's myeloma specialist.
He told us about new treatments in the pipeline. Before they are approved, new drugs don't get a name, they get a number. M-3258 is a drug in early trial now. Dr. M treated the first two humans in the trial! He was excited about that.

He has talked on the phone with our local oncologist, Dr. Arrambide. They have traded cell phone numbers so they can get in touch easily. Dr. M says because Dr. A is willing to take direction from him, we won't need to go to Denver so often. Dr. A will see Doug every month and keep Dr. M posted. That is great for us! Having the two docs on the same page will be wonderful. We will make the Denver trip every 4 months for now.

Doug weighed 155 pounds, not bad.
Dr. M emphasized to Doug how important exercise is. Studies have shown that patients who get regular exercise do better than those who don't.

Doug has a small lump on his head. Dr. M says it doesn't feel like a plasmacytoma to him, probably just a cyst. We will keep checking on it and if it grows, will get it biopsied.

I had to drive the last leg home in the dark. Not my strong suite! We prayed for safe travel and got home safely. Tuesday the roads were dry. Good travel weather. Much to be thankful for! Now we are getting snow.

Here is part of a devotional, Jesus Calling:
"A thankful attitude opens windows of heaven. Spiritual blessings fall freely onto you through those openings into eternity. Thankfulness is not some sort of magic formula; it is the language of Love, which enables you to communicate intimately with Me. A thankful mind-set does not entail a denial of reality with its plethora of problems. Instead, it rejoices in Me, your Savior, in the midst of trials and tribulations. I am your refuge and strength, an ever-present and well-proved help in trouble."

We hope you all enjoy a blessed Thanksgiving!

New local oncologist, Rapid rate dara infusion

We got to meet the new HRRMC oncologist, Dr. Kathryn Arrambide. We like her very much. She's probably in her 50's, bright, knowledgable about myeloma;  she seems compassionate and has a sense of humor. Best of all, she is very willing to work with Dr. M, our Denver specialist. The two docs now have each other's cell phone numbers. She spent almost an hour with us. We have confidence in her.

Doug had a myeloma panel (blood test which tracks the cancer markers) done October 9. The Lambda light chains are up to 6.60 mg/dL and the Kappa/Lambda ratio is .1412 which is low. Not good.
 Dr. A talked with Dr. M and they agreed that Doug should be put back on daratumumab infusions every two weeks instead of monthly. We hope this will keep the myeloma in check. Or at least not growing so fast.
Doug has been out of remission for too long.
He weighed 152 today. He still has a hard time keeping his weight up.

Doug is now on Pomalyst instead of Revlimid. The Pom is being rough on Doug's blood counts but they are good enough to qualify for today's infusion.
ANC was 1.2, platlets 115, hemoglobin 11.2.
His immunoglobulins are very low also. So Doug has to be very careful to avoid large groups of people where he could catch an infection.
During the flu season the only place he will go is to church, where he sits on the end seat.

One thing was different about today's infusion - Dr M said Doug could have the new dara protocol of rapid rate infusion, since he has not had any trouble with dara. Rapid rate is the same dose but it is given in 90 minutes instead of 3 hours. Less time in the chair! His nurse monitored him to make sure he was doing ok. It went well.

Doug is not happy about going back to every two weeks but at least it will go more quickly.

Doug's mother died last week in Nebraska. She was 106 years old and her quality of life has not been very good the last few months. She has told us repeatedly that she is ready to go to heaven. She will be missed but we believe she is in a much better place and at peace, with Jesus. No more dementia.

Peace and love to all.

Today's quote:
  "There is always, always, always something to be thankful for."
Ann Voskamp.