7 replies to this topic

[scuba]

It's been two more weeks and more tests.  Last Week at M.D. Anderson (week #9 since no TKI results):

ANC = 0.86  Today ANC = 0.91

Everything else normal especially platelets - no change.  ANC is still rising as if I had a stem cell transplant.  Painfully slow.

M.D. Anderson took more blood to re-verify my zero FISH and PCR.  PCR came back 20 points (percentage) lower than the last time M.D. Anderson tested my blood (back in December).  FISH is not back yet - and I am very very curious about that.

So because my ANC is still below 1.0 after 2 1/2 months, I still have to stay off Sprycel.   I have no idea what my body is doing - it just seems to be in some sort of steady state.  Not progressing not getting better (except for the FISH result).  Whatever leukemic cells produce (bcr-abl transcripts) is still very much showing up.  It's just not growing.

I feel fine.  It's great to be off meds and great to feel "normal".  I just wonder what our bodies were doing prior to diagnosis?  I can tell that living with 35% PCR does not have any illness effect.  Maybe when it gets above 50%, that's when the body starts to get sick (i.e. WBC's dramatically climb)?  What is the body doing to keep it steady like this without any drug?

I am tempted to get back on Sprycel even with ANC = 0.91 on the belief that I have a lot of healthly cells now and that the myelosuppression won't be as bad this time around.  I strongly believe that when I take Sprycel - my version of CML - my higher order Leukemic cells can't stand it and die off quickly.  The last time this happened, I had no good cells and whammo - severe dangerous myelosuppression.  But now - I think I have a healthier population in reserve.  The data is the data.

[valiantchong]

The results showed positive, since your PCR still reducing 20% even no medication. Was wondering there is a spontaneous remmission. Will the prognosis to stay off medication indefinitely if your PCR is still droping ?

What is the Dr explaination, any other similar case to you ? It is interesting....

Best wishes...

[scuba]

Dr. Cortes is curious about my case - that I am in some sort of steady state or slow decline situation for now.

However - as long as there is any detectable transcripts (PCR) - he wants me back on Sprycel.

I may even get started back on at 50 mg. (lower dose) starting next week to test that my myelosuppression has corrected.

He now believes that my Neutrophil cell recovery are healthy cells (FISH & lower PCR) and that resuming Sprycel should not cause the severe drop I experienced before.  At least that's the guess.  If it's true that the myelosuppression is no longer an issue - then he believes Sprycel - for me - will clobber the CML into oblivion in 3 months.   Again - in my case - Sprycel is incredibly powerful for the type of CML I have.  Very narrow, very specific to the Neutrophils.  I don't understand why at this point.  And I don't need much of the drug to get the big effect (i.e. less side affects!).

Also - if I had some sort of miraculous spontaneous remission going on - then I should have zero PCR by now.   That is not the case for me, although the zero FISH is wonderful to see.   It's the PCR that's puzzling.

[mck_001]

I find this so interesting.  We both had to take a break from 100mg Sprycel around the same time and resumed 70mg around the same time.  Your counts continued to drop while mine hovered...my ANC has been between 1.1 and 1.5 on 70mg.  Another difference is you have a FISH negative while my FISH is now positive again on 70mg...grrr!!!   Praying you get your FISH results soon...I just got mine from MD Anderson for a Mar 11 biopsy on Monday night.  When was your test?

[scuba]

My test was two weeks ago and I am just now getting the results.  Dr. Cortes wants me to continue to stay off medication until my ANC increases some more.  In his words he wants my bone marrow to become "more robust", whatever that means, before I restart.  He also told me that he does not want me to have to have interruption again.  I told him - interuption worked for me !  two weeks on - 3 months off.  I'm o.k. with that.

I am pleased I did not have to take stim shots.  I beleive Dr. Cortes was experimenting here.  I probably have another week to go when my ANC should cross over 1.0 and then back on therapy.

I had hoped that my PCR showed dramatic reduction on its own (2 log or more) during this time so I could be a miracle baby ... but not to be.  At least I don't have to buy Trey wine.  He probably doesn't have any oenophile sophistication anyway - it probably all tastes the same to him.

The zero FISH is intriguing - and Dr. Cortes new view is that we focus on PCR and get that to zero.  When I asked why zero FISH with high PCR, he said we are all unique.  What fewer CML cells I have are pumping out a lot of transripts.  It is what it is and with bcr-abl transcripts in the blood, I "have CML".

I think it is important to highlite that FISH tells you about what cells are bad.  PCR tells you what the bad cells produce.  These are two very different measures and are only at best somewhat correlated.  In general, the fewer Leukemic cells (FISH), the fewer transcripts (PCR) - but in my case that's not quite true.  Yes my PCR is lower, but not by much.  My FISH is gone (probably will reappear though).

(I still wish I could go two weeks on - 3 MONTHS off - I can live with that).  If only it were that simple.

[scuba]

Hi Billie - It's almost certain that I will be back on Sprycel next week.  One doctor wants me to start now and the other (Dr. Cortes) wants me to wait until my ANC gets above 1.0.  Personally I don't see why a difference between 0.91 and 1.0 ANC should matter when it comes to re-start.  It's been a long time and they are genuinely puzzled at the drop.  It's not lab error - it's real.

The purpose of the re-start at 50 mg. is to see if I can stay on without myelosuppression.  If I can, they believe my CML will plummet fast - very fast in fact.  I am very sensitive to Sprycel - or I should say that my CML is ...

But like I said a year ago ... assuming I can get to PCRu - I damn well will try to see if I can be Leukemia free without meds.