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!

Saturday, September 12, 2020

Let’s Play The Waiting Game!

While waiting to hear more about Jeff’s tests, we received a very nice letter from Gift of Life announcing that a swab drive we ran in 2014 recently produced a match for a 62-year-old man with leukemia!  This was exciting news!  We also heard from Barby Pilpel from Gift of Life to let us know she is thinking of us and sending virtual hugs.

We’re getting a lot of virtual hugs and prayers from our friends and family.  They, like us, are ready to hear something.  We’ve heard that Dr. Porter’s office is working on setting up an appointment (double or triple booked because Jeff is supposed to be seen within two weeks of the bone marrow biopsy).  And we saw that results for two tests were posted on the Penn Medicine portal. 

The chimerism test shows that 74% of Jeff’s blood is produced by Nicole’s marrow instead of the 100% that he enjoyed for 9.5 years.  And he is negative for both of the FLT3 mutations for which targeted therapy is available.  Of course, this knowledge leaves us wanting more. 

We attended the Leukemia & Lymphoma Society’s National Virtual Blood Cancer Conference today to get ourselves back in the game – learning about new therapies for blood cancers and new studies on AML.  Jeff fell asleep and missed the discussions on sex during treatment and managing fatigue.  Oh, well.  The sessions were helpful to me.

One screen shared at the conference showed the impact the many new treatments have had on blood cancers and survivorship.  At the bottom of the list were MDS - “minimal impact”, and AML - “no impact”.  Geez.  L&LS is trying to Beat AML so there are many clinical trials going on which do not exclude people with low blood counts as had been the case in the past. Fingers crossed.

The Waiting Game consists of creating questions for which we do not have answers.  Jeff’s questions included:

  1. If I have another bone marrow transplant can I make sure that it is done on a different date than my birthday or transplant anniversary so that I can have three birthdays?
  2. Can I get chicken pox three times?
  3. Since Amy can’t come to the hospital and take my dirty laundry away, do I have to wear only hospital gowns?

Amy’s questions included:

  1. Is the new azacitidine tablet approved on September 1st, an option for Jeff?  (Remember the belly-burning injections of Vidaza?)
  2. Can his treatment be done without the use of Daunorubicin (the likely culprit in his kidney issues)?
  3. Which will be recommended for Jeff, traditional therapies similar to what he’d had before or might there be a suitable clinical trial?  

Thank you to all who are playing – and praying - The Waiting Game with us. Ain’t it fun?