Wednesday, September 23, 2020

This Time Around

Jeff is modeling his new blanket from Subaru/L&LS.

We waited anxiously in the exam room.
  Jeff seemed calm yet I found myself as fidgety as a kid ready for recess.  I noticed a sign listing the services Penn offers to cancer patients – massage, Reiki, nutrition, acupuncture, aromatherapy…  I asked Jeff if he would consider aromatherapy.  He said he’d heard "it stinks”.

Eventually, Dr. Porter came in, commented on my patterned mask and patterned blouse (“matching? No.”) and asked how we were doing.

“You tell us,” I said.

“Eh,” he replied. “It’s never good when leukemia comes back.”

Dr. Porter was uncharacteristically scatterbrained today.  He kept losing his train of thought and he thought he hadn’t told us something that he had, in fact, told us twice before.  He’s a sharp guy and we’d never seen him like this.  Better that we chalk it up to everyone-has-a-bad-day-once-in-awhile rather than the possibility that he was afraid to deliver uncomfortable news.

Jeff’s blood counts continue to drop.  Dr. Porter wished we could “watch it smolder” and take action later but that is not advisable.  The plan is to give Vidaza again, this time through a PICC line, and accompanied by a daily pill, Venetoclax, which improves the efficacy of Vidaza.  It will also cause his blood counts to go lower before they get better.  Treatment will begin on an outpatient basis but Jeff may need to be hospitalized if his counts get too low or if he gets an infection.  Dr. Porter will call Penn Langhorne to see if they would take an AML patient.  If so, the outpatient treatments could be done locally.  Another option would be to return to Dr. Julia Kennedy at Aria Torresdale where he had his Vidaza treatments 10 years ago. 

Jeff’s creatinine was high today so Dr. Porter will also set up an appointment with a kidney specialist at Penn in the city.  I am glad of that.

Leukemia cells break down as they are treated and tend to clog things up, particularly the kidneys.  A drug called Allopurinal can help.  Jeff will start that tomorrow.

After two cycles of the Vidaza/Venetoclax combination another bone marrow biopsy would be done.  If his blasts are down, they may ask Donor Nicole - through the National Bone Marrow Registry - for T-cells in the hopes that her healthy T-cells would eat Jeff’s remaining cancer cells.  Chomp! Chomp!  There is a chance of GVHD, as with bone marrow transplantation.  T-cells evidently work better for patients who relapse two years or more after bone marrow transplant than for those who relapse earlier.  And it is much less harsh than bone marrow transplantation.  If this works, Jeff’s prognosis is good.

If this plan doesn’t work, a second bone marrow transplant may be considered.

I dread Vidaza’s toxicity and Venetoclax’s side effects (kidney problems!).  I would feel a lot better about it if I knew it would be more effective than Vidaza was in 2010-11.  Oh, for a crystal ball!

5 comments:

Judy said...

Hang in there! He's tough! Bist du stark!

Mary Worth said...

Praying for great results! Thanks Amy for the info. Please know I love you.

Ladydi said...

I'll say extra prayers for Jeff at Yom Kippur services on Monday.
My thoughts are with all of you.
Love you guys..

Joyce said...

Bummers! But good to know that there are treatment plans available. Another option for why your doctor may have seemed scatterbrained may be that they are working under unfamiliar and adverse conditions due to COVID-19 restrictions and protocols. Half the time, I have to look up what day of the week it is--I never had these issues before. Or maybe it is because I now have to repeat everything at least 3 times to Milt and he still may not get it. Actually getting his hearing aids out of the box might help, but we couldn't do THAT! You all are in my prayers constantly. Please continue to keep me posted as you have so admirably. (I know that I am going to be asked if I am a robot. I'm checking "no", but I'm no longer so sure.)

Linda said...

Thanks for the updates, Amy. I agree with Judy...hang in there!! You and Jeff are two of the bravest people I know. Keeping you in my thoughts and prayers. Xoxo