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Myelosuppression - Update


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#1 scuba

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Posted 10 February 2011 - 01:49 PM

I have been off Sprycel now for two weeks due to Myelosuppression induced by Sprycel.  Unfortunately - even though I am off Sprycel for two weeks, my counts did not rise.  The CBC test today is essentially the same as last week.  In fact, it is slightly lower.

WBC = 1.0 and ANC = 0.14.  All the docs want me to do is wait.

I don't have any insight as to what is going on??  Why is my body - with no TKI present at all, just sitting at a low level like this.

I am tempted to just stay off the TKI and let the numbers rise to complete normal levels and see if they stay there (not keep going up).  As long as there are no blasts - who knows.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#2 Trey

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Posted 10 February 2011 - 02:10 PM

A couple thoughts.  Although the TKI drugs exit the bloodstream fairly quickly (especially Sprycel, which has the shortest half life of about 5 hours) the drug can remain inside the WBCs for much longer.  The liver cannot remove the drug from inside the cells as it does from the blood plasma, so it could possibly remain inside cells for a while.  If the TKI is inhibiting the good WBC production, the residual effects on progenitor level WBCs could last for some longer time period (since these cells live for quite a while), although the effects will diminish as the drug is exited from the cells.  The bad news is that the leukemic WBCs will likely be less inhibited.  So as the WBC rises, they will likely be a high percentage leukemic cells.  That is why the low WBC by itself is not necessarily a sign that all is going well.  A person can be neutropenic with a high percentage of leukemic cells, which is not a favorable situation.  So getting back on the TKI drug, at some dosage, is very important.  Don't give the CML any advantages.



#3 scuba

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Posted 10 February 2011 - 02:22 PM

I don't disagree - but it seems that my body does not want to make normal cells that are largely unaffected by a TKI (Sprycel in this case and Gleevec before that).  What I am puzzled by is the slow recovery of WBC's even leukemic ones.  As far as the body is concerned I am very low Neutrophils and there should be signals being given off to make more - and certainly the normal cells should be responding (as well as leukemic ones).

For what it is worth, the Oncologists are not concerned yet.  This is still normal for them to see.   They want my levels to stay down while hitting it with Sprycel when the levels get high enough.  The problem for me is that low ANC - 'hurts'.  The mouth sores are a real pain.  And I mean 'pain'.

As I read about Neutrophils - they are very important protectors of the mucous membranes first line of defense especially the mouth, nasal cavaties and GI tract.   In my case, I no longer need a blood test to tell me I am low ANC - I can feel it.  Neutrophils have the shortest half-life measured in hours of any of the blood cells.  I would expect the Sprycel containing cells to long be gone after 14 days.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#4 rct

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Posted 10 February 2011 - 02:22 PM

Well, there won't be much of a good answer until someone trys to force your system to do something.  Without giving your marrow a chance to make cells, the answers are limited.

They are essentially three answers for us, one of them fits, one will end up fitting for you.

First, rule out:

1. Other cancer(s)/myleoproliferative disorders(s).  We've been dealing with these low counts a long time, this has been done to everyones satisfaction.  Well, maybe not the patient, she still worries something awful is going on in there.  The first indication that this was NOT the case was response to no TKI making those numbers climb, even a little.  After that, the grower making neutrophils go through the roof even in the presence of Gleevec.

2. An extremely rare syndrome in which your body attacks its' own neutrophils.  There is a test for this.  Takes a buncha blood.  Only the Red Cross does the test, you can only do it on certain days, and they draw the blood a certain amount of time before having it picked up.  Is complex, can get all fluxored up by something as simple as traffic delaying the blood picker upper dude, and is frustrating because there are now three parties, you, the dox, and the Red Cross.  Don't trust it to the local LabCorp or National, not worth trying.  We did it for The Mrs, it was negative, but it was the only thing they had not ruled out, way far out in left field whack nuts as it was, we are glad they did it.

This would be indicated by withdrawing TKI and moving the grower shots farther apart.  ANC measurements would chart like that road going into Yosemite from northern Nevada, a great ride if you ever get out there.  We didn't have any suspicion of this at all, our onc just sorta pulled this idea out of his butt, he's been doing this blood stuff a long time I guess.

After that,

3. TKI.  We all know about that one, our situation is that.

The answer is only one of the above for the most part.  Either marrow not making them, or they are being destroyed out in the peripheral.  Don't know for certain either until they force you to make cells, and I don't know why they are letting you sit there like that.

If my Mrs got that low they would have hospitalized her until they knew what was going on, of that I am certain.

Good luck with it Michael.  I hate this happening to you and I really wish they would just shoot you up and get them going.

rct



#5 scuba

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Posted 10 February 2011 - 02:47 PM

I don't understand why they don't want to "shoot me up"...I've asked - repeatedly.  Dr. Cortes believes that because Sprycel works relatively quickly, they can cycle my body (on and off, on and off) to create normal cells as the Sprycel level is increased over time.  They believe that I have the time to do this (no blasts) and all they are trying to do right now is find the right balance so I don't get so low on ANC.  0.17 is really quite low.  I don't know why I am not 'more' sick.  Apart from the mouth sores, I feel fine.

I am looking into alternative therapies in order to boost my Neutrophils - since nobody wants to 'shoot me up'


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#6 rct

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Posted 10 February 2011 - 03:02 PM

Separating the CML from the low neutrophils is the approach that they have taken with The Mrs.

Dangerously low neuts as yours are are a whole nother health problem called neutropenic sepsis, and they should, in our experience and opinion, be thinking about that possiblity.  In short, those sores in your mouth can get all hella ugly overnight, and that isn't good.

The Mrs can say if she is down, and down means say under 800.  Not exactly "sick", but she can tell.  I can usually tell by looking at her if she is getting way low.  Fortunately, that hasn't happened in a while touch wood.

I am concerned that making such a hardcore connection to the TKI of choice is not a good thing.  Sprycel schmycel, get this guys counts up.  The best TKI in the world is not worth crap if you have no marrow working.

rct



#7 Trey

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Posted 10 February 2011 - 05:53 PM

Michael,

You said:

"Neutrophils have the shortest half-life measured in hours of any of the  blood cells.  I would expect the Sprycel containing cells to long be  gone after 14 days."

Oddly, when it come to TKI drugs, we do not care about killing the worker bee white blood cells (which only live from hours to a few days).  In fact, the TKI drugs do not kill the worker bee cells.  They are "neuters" and cannot reproduce, so they look at BCR-ABL and TKI drugs and say "so what, I can't reproduce anyway" and ignore the TKI drugs.  But they die very quickly on their own anyway.  The TKI drugs are designed to kill off the longer living leukemic WBC cells which can reproduce, including higher level progenitors which can live for months or possibly years.  Once these progenitor cells are killed, the production of the worker bee level WBCs is severely cut back, until at PCRU they are being produced at a trickle.  The huge initial drops in WBC after starting TKI drugs are due to the worker bee WBCs dying naturally and NOT being replaced, because the progenitor WBCs are being killed off en masse, so the overall numbers fall rapidly.

For you, the worker bee cells are very few as a result of many of the higher order leuklemic progenitor cells having been killed off.  So the numbers are low.  At the same time the good cell production is low.  RCT had some good thoughts, so I will not repeat.  But in general, whether TKI drugs are suppressing the good progenitor WBCs, or they are still too few to be effective (marrow injury due to the leukemia), will not be known.  But without TKI drugs the leukemic cells will continue to dominate the blood cell production process, whether your WBC is low or high.

Your Onc is taking an approach that may work.  It is essentially a strung-out drug pulsing (on-off-on-off drug cycling).  Would neupogen be a better approach?  Who knows.  But look at the "Tedsey model" and "RCT-Mrs model" and you can gain some comfort that this could be a long term process, but a return to an acceptable new normalcy usually prevails.

Low ANC is not the whole story.  The body has back-up mechanisms, as the various blood cells overlap in responsibilities.






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