Adventure #2, as of Nov 17

Hi Folks,
A few developments to share about my adventure.
First of all, I had meant to include Rekha Thomas and Peter Blossey, who live in Seattle and whom I have known for a long time. Rekha is a professor in the Department of Mathematics, and Peter is a researcher in the Department of Atmospheric Sciences.
Second, status:
Thu, Nov 11, Seattle Cancer Care Alliance
This past Thursday, I met with my original oncologist, Dr. Andrei Shustov. This only after the Kaiser oncologist gave a referral. From what I can tell, the two oncologists have a long, unproductive history with each other.

Shustov laid out the options. It was another thought provoking discussion. I have spelled this out here in my OneNote: Cure versus Treat. The upshot, do I undertake :

  • High dose chemo, which if successful, will drive a remission, drop an atomic bomb of chemo to obliterate the bad (and good) guys and then insert stem cells to re-establish my immunity
  • Biologically based drugs that work akin to insulin in that it will not solve the lymphoma, but if successful, will make it go into remission for some period of time. When it returns, try another biologic drug.
We agreed to the second option.
The gameplan:
  • Get a PET scan
  • From the results, identify where to do a biopsy
  • Start on a course of Folotyn.
On Deck:
  • Monday, Nov 18: Get a complex care management person to help me. At the suggestion of Anne Miano, I called and complained on Friday. This Dr. Chen will refer a test (like CT Scan or PET scan) but not the follow-up with him go over results and next steps. That’s lame. So, I did two things:
    • Called to Kaiser’s Bellevue oncology and pushed for something to fill this huge gap
    • Responded to a “How are we doing?” survey to say that Chen leaves a lot to be desired
    • I will also use LinkedIn to message the exec at the bottom of the email to say I would like to chat with her
  • Tuesday, Nov 19: Drive to Olympia to get a PET scan.
    • Trivia point: Dr Chen said PETs occur in Bellevue on Thursdays and Olympia (~60 miles away) on Tuesdays. Then he said, “why would you want to drive to Olympia?” I think most of his time is spent reading things, not being a warrior curing patients. Otherwise why would he make such a comment for a patient who has aggressive cancer?
  • Wednesday, Nov 20: Get the PET results
    • Okay this may come on Thursday but I am going to talk to the PET technician to help expedite this, and share to SCCA
  • Thu – Mon, Nov 21 – 25: get a biopsy based on SCCA guidance
    • We need a very active site that “lights up” on the PET scan
    • We need an incisional biopsy so that we get a LOT of tissue. No needle biopsy or core biopsy.
  • Perhaps Mon Nov 21: start the Folotyn.
Appendix
“Cure” Option
Autologous
  • Hi dose Chemo to drive the lymphoma back to remission
  • Extract my own stem cells from my blood
  • Drop an atomic bomb sized dose of chemo that will obliterate my immune system and reduce the capacity of organs like lungs, heart, by 40-50%
  • Insert my stems cells into my bone marrow
  • <30 span="" survivorship="">
  • If the stem cells include malignant ones, the lymphoma can come back
Allogenic
  • Hi dose Chemo to drive the lymphoma back to remission
  • Extract someone else’s own stem cells from their blood
  • Drop an atomic bomb sized dose of chemo that will obliterate my immune system and reduce the capacity of organs like lungs, heart, by 40-50%
  • Insert their stems cells into my bone marrow
  • <30 span="" survivorship="">
  • If the stem cells include malignant ones, the lymphoma can come back
  • If you survive this (I need to find the #s) you will then face GVH – Graft Versus Host
  • The new immune system thinks every organ is an intruder and unleashes everything it has to snuff them out
  • So you get treated with immuno-suppression drugs to manage this
  • But you need to find the right balance as otherwise, you have no immunity a cold from someone will kill you
“Treat” Option
Biologics
  • Use a biopsy to better understand your DNA profile
  • Them administer drugs that act at the sub-cellular level
    • Folotyn
    • Others
  • Does not impact body systems the way that chemo does
  • You will not cure yourself of the disease – you are trying to compel remission
  • There is  a high chance the lymphoma will return at which point you explore other biologics
  • This approach does minimal to zero damage to the rest of your body systems

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