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:
Hang in there! He's tough! Bist du stark!
Praying for great results! Thanks Amy for the info. Please know I love you.
I'll say extra prayers for Jeff at Yom Kippur services on Monday.
My thoughts are with all of you.
Love you guys..
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.)
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
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