Monday, August 25, 2014

Back to Lunder 10, MGH

          At 5:00 p.m. this evening, David was re-admitted to Lunder 10, the oncology inpatient unit at MGH. Around 9 p.m., he started the new round of chemotherapy: high dose cytarabine. Cytarabine is one of the two chemotherapy drugs David had at Walter Reed Medical Center (dearly beloved Wrenmimic). [He will not be receiving daunorubicin, the extremely toxic drug that probably caused his heart damage.]
          For this round, he will receive 2 grams of cytarabine every 12 hours for 6 days: a total of 24 grams. 36 grams is the maximum dose. Dr. Fathi, the oncologist, hopes that the 24 gram dosage will lessen the likelihood of cerebellum damage. The cerebellum is the lower part of the brain, attached to the brain stem. It controls fine motor movement, balance and walking, posture, and motor learning. The medical staff will monitor his motor skills every day.
          David looks better than he has since early April. He’s gained 30 pounds, though still light at 6’1” and 170 lbs. His beard is full and bushy (he’s not allowed to shave, because of the bleeding risk due to low platelets). The beard probably won’t survive the chemo.
          We got back on Saturday, 23 August, from a lovely week at a rental house in Clinton, Connecticut, near the Long Island Sound. Sam flew in from Provo, Utah and he, David, Jim, and I were together all week. R’el visited each weekend, working hard Monday through Friday at her new job as an attending psychiatrist on the Latino unit at Bellevue Hospital in New York City. Peter worked in the Bronx Monday, Wednesday, and Friday; Xiomara worked at Mt. Sinai Monday, Tuesday, and Thursday. They commuted to Clinton, via car or via Metronorth train to New Haven. Annie arrived in Boston on Wednesday evening. She has been a full-time missionary in Taiwan, and we hadn’t seen her for the past 18 months. She’ll be at home until 1 September, when she returns to the University of Wisconsin in Madison for her junior year.
          Wednesday afternoon, David, Jim, and I drove to MGH to learn of David’s latest treatment plan. Sam came along to spend the afternoon with his friend, Kyle. He needed to use the internet at MGH (the Clinton house internet was unreliable), so he came in with us. While we were sitting in the exam room, Dr. Chen, the transplant doctor, dropped by, and was very surprised to see Sam. He arranged for Sam to return on Friday, 22 August, to donate lymphocytes (white blood cells—different from the stem cells he donated for the stem cell transplant 16 June). This involved sitting for about 4 ½ hours while a needle removed his whole blood from a vein. A machine then separated out the lymphocytes and returned the other blood cells back to his bloodstream. They then froze his lymphocytes and plan to infuse them into David’s bloodstream at the nadir, when David’s white blood cell counts hit bottom about a week after the 6 days of cytarabine infusion ends. Hopefully these donor white blood cells from Sam will recognize David’s remaining leukemia cells as foreign and attack them: ‘graft versus leukemia’. Of course, as always, there is the risk of ‘graft versus host’ disease, where the donor cells attack David’s healthy, fast-growing cells of the skin, gut, and liver.


          It’s been a rough transition, from the relief of leukemia remission to this disappointing relapse. The prognosis is not good, but there’s hope that David can achieve a second remission. We appreciate your continued thoughts and prayers. I’m very grateful that David was well enough to enjoy the vacation week with our family. It helps fortify us for the next round.

6 comments:

  1. Wonderful Johnstons, my prayers and hope are with you. I will add David's name to the temple roll this morning and include him in my fast this week. Much love to you all!

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  2. You're in our family's thoughts and prayers. Keep fighting, David. We are cheering you on.

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  3. Dearest Sister and Brother Johnston,
    I wish I could be there to help, or at least hug you! I am praying for you and thinking of you and your family!
    Erin Newton

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  4. Hugs and prayers for your family. I will be thinking of you and praying for David and the doctors.
    Lori Lyn

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  5. Have doctors mentioned Vorinostat (aka SAHA) marketed under the name Zolinzaf?
    Recent studies have shown synergistic efficacy against FLT3-ITD when used in combination with chemo or radiation.
    A phase I/II clinical trial is testing Sorafenib, Vorinostat, and Bortezomib in combination. The primary outcome measure is safety. Interestingly, the study has been running since Feb 2012 but they are still recruiting. This is likely related to an efficacy outcome measure that was added Apr 2013 to measure remission. No results have been published -- so, disclaimer, we're reading between the lines here (guessing). However, it would be a very good sign if they are still interested in FLT3-ITD recruits.

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  6. You can do it David! We're praying and pulling for you! I hope you have a great birthday! The Wisco's

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