This is what we are up against

Dr. Eshun,

OK. I have spoken to Dr. Matthay at UCSF, Dr. Kushner at Sloan, and Dr Kletzel.


Matthay would not advise over the phone, but would set a consult for next week once she’s seen the scans.  She did suggest that more chemo followed by MIBG would be a likely option.  She thought Ch14.18 would be important as well.  He concern was that Ronan may not be able to receive the Ch14.18 if he does not start stem cell transplant  within 9 months prior to diagnosis.  See
The following MIBG with stem cell trial appears available:
Dr. Kushner has seen the Bone scan, PET, CT, MRI, and MIBG reports.  He wants to see the scans before making a formal recommendation, but he is inclined to one dose of topotecan (sp?) and the chemo it is paired with in a higher dose, then immediately into 3f8 with NK cell.  He says he is leaning towards this because he believes the MIBG spots are likely marrow since the bone scan was largely negative.  He said he would do MIBG later if the MIBG spots remained.  Kushner doubted the ability to use 3f8 if MIBG therapy is done first.  He said another benefit of this plan is lower toxicity which would allow Ronan to better tolerate chemo and radiation down the road.
I believe this trial is here:
Kletzel tended to agree with Kushner’s assertion that if the bone scan showed no discrete abnormality then the MIBG spots were likely marrow.  He also said that it is difficult to recommend anything without seeing the scans.  But, he liked the idea of MIBG therapy best because what remains is MIBG avid.  Logically, if the cancer has MIBG uptake then the MIBG therapy should be effective.  He then said antibodies would be important afterward.  He was concerned about further treatment that would change the cancer to not be MIBG avid and then MIBG would not be effective.  Overall he was not optimistic about future treatment.
Kushner and Kletzel both agreed that stem cell transplant, single, tandem, or even triple will not likely make a difference unless and until the MIBG is clear.  The data from the abstract seems to support this contention (although many of those on the abstract did not get antibodies).
All 3 were a bit surprised that all bone marrow biopsies and aspirits have been clean since cycle 5, the bone scan negative, but MIBG active.  But ultimately all three said NB doesn’t always follow logic.
I see the logic in both courses of treatment, but again does logic apply?
If boney, I tend toward MIBG.  If marrow, I tend toward MSKCC’s approach.
So, a primary question becomes: Do you believe that the residual cancer is boney, marrow, or both?
I hope we can discuss on Tuesday.
Thank you again for your help.
Woody Thompson

7 thoughts on “This is what we are up against”

  1. You Lord, know exactly what Ronan needs. Fill that need and rescue this child that you have made wonderful plans Jesus name amen.

  2. I’m wishing so much JOY in your little boy’s life and in yours, today and every day for so many years. We’ll be thinking of you here in Chicago and wanting all the love to go your way.

    Leslie & Nico

  3. You are in our thoughts and prayers. Ro is so lucky to have fabulous parents that will fight to find the right treatment for your precious boy!

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