6 replies to this topic

[scuba]

Well... This adventure continues.  After 3 weeks of no Sprycel - my white blood system shows little or no recovery from myelosuppression.

Trey may find the numbers interesting - I am officially an "outlier" (as far as population statistics):

WBC:  1.3 (last week 1.0)
ANC:  0.17(last week 0.14)

RBC:  3.52 (last week 3.59) (within margin of error?)
HGB:  11.8 (last week 11.9)
HCT:  35.0 (last week 35.4)

Platelets:  156 (last week 132)

There is 'speculation' that since my Platelets are not 'spiking' up - that the Leukemic system is 'arrested' whatever that means and my normal system is slowly (very slowly) recovering to fill the void.  The doctors expected my system to recover faster than this.  I am apparently VERY sensitive to Sprycel and it nails the CML hard in my case.  They still want to put me back on medication after my counts recover to near normal but at a very reduced dose.  I am now an 'experiment'.  Still - no stim shots - and they confirmed that they have concern about stimulating the cancer rather than stimulating my normal system.

As long as I don't get an infection - it is watch and wait.

Unbelievable.

I told them - "I am in spontaneous remission - helped by Sprycel" - and the answer was, "could be" (imagine that) - but you will still go back on therapy when the low counts recover.  If I am still low next week - I will have a bone marrow biopsy so they can look inside and see what's going on including PCR/FISH and whatever else they want to do.  This may all be good news.  Still no concern about blasts.  I don't have any.  I don't have any blood.

What a strange trip this has been.

Trey - if you have any literature research on long term low counts without TKI's I'd love to read about it.  The docs are finding my case - interesting.  I am curious what other patients have experienced my path (i.e. sustained low counts post TKI cessation for long periods).

[Tedsey]

Michael,

Thanks for reporting this.  Since your route is so different than most...  It is very interesting to hear low PLT described as akin to an "arrested" leukemic system.  If you could, clarification would be good if and when you get it.  My PLT are staying steady in the low 30K range now.  My WBC, ANC and HGB are getting low again (ironically the severe anemia started at the 5 month mark on Gleevec too--I am now on Sprycel 100mg).  I told my onc before learning about what Dr C was doing that I am very uncomfortable with the shots (who wouldn't be after reading the literature and some studies?).  In my case, I deal with the red and white stims.  But at HGB 8.5, my onc actually held off giving me one the other day.  Although I can feel it a little now, I still do very well at 8.5.  I know the signs if it gets worse and will have to weigh the dangers of transfusions vs. stim shots--again.  As for the WBC, if they get to danger levels again, like you, I may try to go the route you are.  However, having two little children at home may be good reason for me to stay with the WBC stims.

Keep reporting!  Wishing you a quick recovery and, of course, hoping that at least one of us here would just go into "spontaneous remission".

Teds

[scuba]

Tedsey wrote, ".... It is very interesting to hear low PLT described as akin to an "arrested" leukemic system."

It is not uncommon for Platelets to react first to the relieving of TKI pressure in CML.  In fact, after I had my first Gleevec break due myelosuppression then - my Platelets shot up within a week to over 800.  I recall Trey writing at the time that fact alone should give me pause thinking I was in "remission".  He was certainly correct.

However - this time with Spyrcel - this is not occuring and more importantly, my whole system is showing a recovery indicating "arrested" CML.  It's not that the CML is gone (wouldn't that be nice) - it's just that it is not growing - for whatever reason despite the abscence of TKI.  Spyrcel did something.

Dr. Cortes and my primary Oncologist (takes the weekly CBC's) both prefer this waiting approach.  Let my levels come up naturally (as long as I am not sick) and then go back on a lower dose of Sprycel.  At some point they believe that there will be a balance established with CML decreasing while my normal system takes over.

And without any stim shots.  The platelets seem to be an early marker.

If my normal system continues to grow back this slowly - they will want to go in and look at the bone marrow.  It is not out of the possibility, I was told, that my CML is decreasing on its own right now.  They see this from time to time and can't explain it.  I am apparently in that small subset population.  But - they also see CML come back with a vengeance and often blast crisis - so I am not out of the woods by any means.  They just feel they have a window to work.

I do want to be clear:  Until they see a PCR level that drops by 3 orders of magnitude from where it was - I am a CML'er.  The fact that my body may be doing something to keep this in check (very slow growth or zero) does not mean a thing to them (the doc's).  If I were heading into true remission, my PCR levels would disappear (they have seen that) to undetectable.  So BCR-ABL transcripts are being produced somehow.  For all I know my lymphocytic system is taking on the challenge - but not until the Docs go into my bone marrow or give me another PCR test will they change their course.  The good news:  I drink green tea, eat grapefruits (soon) and play.

[cherylannes]

Interesting journey for you so far Michael....

Fingers are crossed that all of this might somehow work out to be good news for you.....

I can say that I have been off of TKI's since September and on a very low dose of Peg IFN ( 45 UG once a week) and my counts are quite low, not as low as yours.  WBC ~ 3.4, Hgb @ 110, Plt @ 234....BUT, I have been CMR for quite a few years before stopping the Dasatinib....  Prior to stopping Dasatinib I was on 50mg once a day, and I know some patients on 20mgs once a day in CMR for quite a few years with relatively low counts.....but not dangerously low...

Different strokes for different folks, our similarities are punctuated by our biological differences.....We are really all an experiment.....What other cancer treatment has come this far....

Cheers!

Cheryl-Anne

[scuba]

Thanks CherylAnnes - I think that is where I am headed....very low dose Sprycel (20 mg) and perhaps I can go on the Interferon you are on.

I asked Dr. Cortes about that and he does not like Interferon - he said it would make me very sick.  I am not sure he understood I meant the Pegylated kind.

No matter - I need to get my PCR levels down before they will do anything else.  But as I noted above - my PCR levels are dropping anyway - despite the TKI breaks.  I happen to believe that Sprycel was quite effective in that regard.

We'll see ...

[Trey]

It would be useful to have a FISH done.  Your PCRs have been non-understandable.

I wish I could subscribe to the "arrested CML" theory.  I subscribe to the "regrouping" theory.  CML left alone regroups to fight harder.  You need to be monitored very closely.  I would ask for regular FISH tests.

[scuba]

Thanks for the suggestion, Trey - I have requested a FISH at my next blood draw.