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Concerned Citizen and a Serial Entrepreneur wrapped in a progressive democratic soul longing for us all to get along.

Friday, February 28, 2014

Today is Friday, February 28th

It's the last day of February and it's raining!!! All those rain dances are working!

Lots to tell from my slug station gazing at the storm...  I feel like we've taken control again!  Yesterday was a trip to Stanford and dashed hopes for treatment.  Three times Tracy's counts have been too low for safe treatment and he will have run out of time and be booted from the trial by the first week of March.  Yesterday we challenged the Dr.'s and just kept pushing... When Tracy asked "how long 'till I relapse?"  the reply was a couple months.  We asked if he should take Neupogen to drive up his counts... "I can't tell you to do that" but it was with a wink and a nod.... it may help our boy but it would skew the stats of the clinical trial and Pfizer is king.  I've got a lot to say about a screwed up medical world where the drug co. rather than the doctor rules and the patient be damned.

Anyway,  the Fellow who came in first, Sheema, was very direct and respectful.  We decided to go for it and I asked why Tracy hadn't been given a bone marrow transplant last year when he was in remission.   His reply was very telling...  it's a last resort since it's a very onerous and dangerous procedure for the patient and the statistics if you survive are good but it's the last stop.  So,  then we asked about Penn and he said that's the ticket.  That's a cure and yes there's nausea & flu like symptoms during the treatment but that's it.  Then it's over!!!  You're cured!  Here's a link to the Penn Study including a fascinating video explanation from Dr. Porter:


So, we pressed some more when Dr. Liedtke arrived... she said call Penn and get an apt. and they agreed to send/fax Tracy's info to Penn when asked.

So WE DID IT!!!   By the time we got home from Stanford yesterday;  it was about 4:30 EST.  I went to the URL I've referenced above and called the number and I actually was finally connected to a real live person who was the Clinical Trial Navigator with a heart.  I began to explain T's saga but when I got to 2-3 months before he relapses;  I broke down.  Handed the phone to T and he answered more of the ?'s.  When I collected myself;  I took back the phone and we were given hope!!!  T sounds like a candidate and Dr. Noelle Frey is administering the next study.  I called her assistant, nurse? not sure and actually just spoke to her this morning.  She asked for T's records which I've just asked to have faxed from Stanford and she told us the next intake is April.

Pray please for our T to be admitted... send white light to surround us and most of all bless all of us!!!

My faith keeps me going and I'm trusting my gut that Penn is the ticket.  I've always felt we were blessed to be in Stanford's care but with the continual frustration with the clinical trial and now the missgivings I have surrounding the bone marrow transplant ( which is our last resort ) I'm praying for admittance to Penn.  Feels like back in the day when I was awaiting responses for law school... Cal - Boalt & Stanford turned me down but Hastings admitted me... I had a choice and Tracy & I at least have valuable options!!!

Just spoke with the Stanford coordinator and he says Pfizer will allow the next cycle to begin... Mon. here we go again...  white light needed!!!!

1 comment:

  1. Lets Go Penn - Lets Go Penn! Thats what I got to say! Sending all my hope that this is the ticket. and a CURE! How great is that????? Positive thoughts your way! Im there with you both! Love you so much! Deb