2 replies to this topic

[scuba]

Week 5 with No TKI results:

WBC:  1.9  (last week: WBC:  1.8)
ANC:   0.53 (last week ANC:   0.33)
PLT:    195  (last week  PLT:  185)  <----this is great news

Red Cells: no change (a tiny bit higher)

From my week 4 post:

(Tomorrow, I go in for another CBC.  I expect to find that my ANC is higher.  How much higher...maybe 0.6.  WBC = maybe 1.8 -2.2  (I'll report what it is and we can see if my guess is correct).  What I care most about are my Platelets.  If they are still normal - then I believe something fundamental is going on in my marrow to keep CML in check (just a guess - no data yet).)

I do believe something very interesting is going on here.  According to Dr. Cortes, my recovery response since stopping Sprycel is identical to what he sees following Stem cell transplant.  I think they will finally let me have a FISH/PCR to see what the bcr-abl is doing - but I have a gut feeling that my bone marrow is transforming.  Call it wild thinking - but I have a suspicion that my NK & T-cells have figured this out and are attacking the residual leukemic cells.  I really believe this is happening - albeit with no data until FISH/PCR.  But I don't believe that a high percentage of leukemic cells without TKI pressure would not cause my cell counts to rise much much faster than this.  And the platelets should have been through the roof.

This is way cool.

o.k. - Trey - I'm dreamin', but it feels good.  I can live with 70 mg. Sprycel for two weeks and then go on TKI holiday for 3 months.

[PhilB]

It's a lovely dream, but I wouldn't get my hopes up if I were you.

When someone is recovering from a transplant they start out with a small population of active stem cells - the engrafted ones from the donor - and things slowly build up.  The odds are that you have TWO small populations of active stem cells - good guys and bad guys. They are in a race to rebuild, but both are so beaten up they are going slowly.  As previously indicated it would be very good to get a FISH to see who's winning that race at the moment, but even if the good guys have an early lead the one thing you can be sure of is that without treatment the Ph+ tortoise will eventually turn into a CML hare.

Before you started treatment the good guys were being smothered to death by the bad guys.  There is every reason to hope that this period of low counts may have given them a chance to get their breath back a bit and be better prepared for the contest, but at the end of the day the only way they will win the race is if your doctors manage to find some level of TKI dosage, possibly coupled with stim shots, that rigs the race in their favour.

Phil

[scuba]

PhilB wrote, "There is every reason to hope that this period of low counts may have  given them a chance to get their breath back a bit and be better  prepared for the contest, but at the end of the day the only way they  will win the race is if your doctors manage to find some level of TKI  dosage, possibly coupled with stim shots, that rigs the race in their  favour."

It's the pattern of my recovery that has the docs curious - but I don't disagree with your statement.  I'll report back here when I get the FISH test done.  Right now I have to convince them to let me have one taken.  They felt (prior to these results) that it was too soon ... that I needed to get back on therapy once my counts recovered.

I don't anticipate taking Stim shots.  Dr. Cortes likes my response and the way Sprycel is working.  He just wants to keep hitting it when my counts are high enough (although he doesn't like it getting as low as it did).  The way it was explained - the Sprycel reduces the cell level so the body sends signals to make more.  And what is made could be both normal and leukemic cells.  The pattern of my recovery leads them to believe it is normal cells by and large.  Only a FISH/PCR will verify.

And the dream is - what if my FISH is zero.  Hmmm.