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Week 6 No TKI (Dasatinib)


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#1 scuba

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Posted 10 March 2011 - 10:51 AM

Well...it's been six weeks since I have taken any TKI (Sprycel).  I know Trey likes to see the numbers:


WBC = 1.9 (last week 1.9)
ANC = 0.65 (last week 0.53)
PLT = 234

Red cells ( a little higher than last week).  I just need to re-start a strong exercise program and get the heart pumping again.

RBC = 3.53
HGB = 11.9
HCT = 35.7
MCV = 101

They drew blood today for both FISH and PCR.  My 'recovery' path since myelosuppression is following a stem cell transplant patient trajectory.  After my repeated requests for a bcr-abl test, they more than agreed.  I am waiting to hear from Dr. Cortes on these latest results.

In 10 days I get back the FISH/bcr-abl numbers (intl. scale).  My last FISH was taken in January and showed 53% positive cells.  PCR showed 33% (I was at 155% at dx. intl. scale).  I had just started Sprycel (one week in).  Anyone care to speculate on what my FISH level will be when the results come in?

I can't wait to see the FISH results.  What if they are Zero.  I start going to church again.

One thing is certain ... with the level of CML in my body in January, my cell counts should have recovered much faster than they are doing (normal + leukemic).  That is not happening - so something is up.  I am crossing my fingers that I am a miracle baby.


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 janner25

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Posted 10 March 2011 - 11:17 AM

Hi Michael - everything Thursday I look forward to seeing your "week x No TKI".  I don't have much of the knowledge that most people on this board have...but I know I like to see the numbers!

Being on tasigna 2x per day, I have to tell you I'm slightly envious that you have not taken a single TKI pill in the past 6 weeks; however, my trials and tribulations are nothing compared to what it sounds like you have gone through with the myelosuppresion, etc.  Its amazing to me how each person reacts differently to the drugs...but I guess that's what makes us all special .

Prayers for you so that you CAN be the 'miracle baby'.  I look forward to your FISH numbers!!!!  Hoping for zeros......



#3 Tedsey

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Posted 10 March 2011 - 11:26 AM

Again, thanks for reporting out.  I am probably as anxious as you to hear what your numbers are.  I wish you a miracle.  What a unique journey.  As for going to church, if the FISH and PCR numbers are awesome (which I hope with all my heart they are), maybe we should build a church in honor of Bristol Myers Squibb and Dr Cortez.  Sorry if I offended anyone.  I am just joking.  But it appears they have more to do with this than anything else.

Teds



#4 valiantchong

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Posted 10 March 2011 - 11:27 AM

Hi MIc,

I guess u be ok... your CBC is stable now, I think it will go back to a range where u can continue your treatment. With ANC 0.6, I guess u be back in normal treatment probably next week, where your ANC be 1,,,,

One question on your PCR, I do not understand how it be 155% in international scale ?? I thought the max level should be 100 % how could be one scale more than 100% ? Anyone could explain ?



#5 scuba

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Posted 10 March 2011 - 11:59 AM

Mr. V ... No one quite understands how a PCR level can be above 100%... but the way it was explained to me is that the number is relative to some standard.

The standard is set to 1.0  (100%) by definition.  If the PCR test result is above that standard - the reporting is above 100%, if it is below the standard, the reporting is less than 100%.

This method was an attempt (a poor one in my opinion) to normalize PCR reporting in the medical community so results can be compared.  All that is important is that the number from wherever  one starts  (155% in my case) continually decreases over time as you go through treatment or intervention by God.  As I started with Gleevec, my numbers quickly fell from 155% to less than 70% in a few weeks time and my last reported number was 33% after a much longer time on and off Gleevec.   Ultimately if I am going to have success with CML, my numbers would show several log reduction within a set time frame (12-18 months).  Trey is better qualified to fill in the gaps here than I am on this.  If I see my PCR levels less than 0.1%, I know I am making good progress.

What is interesting in my case is that I have been off TKI's almost as much as I have been on them.  It will be interesting - to say the least - to learn what my PCR / and/or FISH level is currently.  I can't imagine that it has gone up.  I suspect that it is flat (no change) and that the CML cells are simply not active.  They are there ... just not dividing for some reason.  Meanwhile my normal cells are replicating in what would be a normal pattern (from severe depletion) and re-populating my cell lines.  At least that is what it seems like is going on.

The doctors (I have two) are becoming curious from a scientific point of view - my myelosuppression was only one line (Neutrophils).  Why? 

All of this is speculation until we see what the FISH/ PCR reports.  It is my view that if FISH is much much lower (along with PCR), I will continue on this path of having regular tests to plot the path.  I will stay off drugs until the numbers turn around.  Perhaps they won't!!  But I am not deluding myself.

By the way - I have added Curcumin to my diet.  Yummy India food.  I started this in January.  Correlation?  nah....


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 scuba

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Posted 10 March 2011 - 12:05 PM

What I think is unique is that Dr. Cortes has decided not to "stimulate" me.  For whatever reason, he prefers to let this play out and only give me Sprycel when my counts are high enough to handle it.  If I had been stimulated (the non-fun kind), then I suspect I would have a much more serious problems since there are so many cell lines at work.  At first he did not even want to test for CML (fish/pcr), just let the counts rise, return to Spyrcel, counts drop - go off, let the counts rise, go back on Sprycel... and do this until I become steady and then wait 3 months to do the FISH PCR/ and/or bone marrow.  From his point of view.  I have CML.  Will always have it until they find a cure and therefore I must get on Sprycel (or another TKI) to keep the disease in check.  CML is only a problem when the counts get too high or you go into blast crisis.  Otherwise, as far as he is concerned, it is manageable.  Dr. Cortes is a very matter of fact kind of guy.  The benefit of following this protocol is that I have no side affects and live normally while off the drug.  He beleives he can get me to full remission by using this weekly CBC measuring approach.

HOWEVER - my CBC results does have him 'curious'.


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"


#7 Trey

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Posted 10 March 2011 - 01:07 PM

"No one quite understands how a PCR level can be above 100%..."

The International Scale (IS) for CML PCRs sets the average PCR level at diagnosis at 100%.  The figures were determined using the demonstrated diagnosis PCRs among all the Gleevec IRIS Trial participants during 2001 - 2009.  If someone has a PCR higher than 100% on the IS, then their PCR is higher than the average PCR at diagnosis among the IRIS Trail participants.  So if someone has a PCR of 155%, then their PCR is 55% higher than the established IS average at diagnosis.  Individual labs adjust their PCR results to line up with the IS standards (example: for a particular lab the average PCR at diagnosis may be something like 8%; so when they convert their PCR to IS, their 8% becomes 100% on the IS).  IS has not solved anything, as shown by all the questions it raises, although the argument is that log reductions are somewhat standardized.  So when using IS numbers, the log reduction is usually the best indicator of the result.

It is important to remember that a PCR does not measure the percentage of leukemic cells in the blood, although a FISH and BMB do measure the percentage of good cells to leukemic ones.  The PCR provides a raw number that is then converted to a percentage, but that percentage is not in relation to total blood cells.



#8 Trey

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Posted 10 March 2011 - 01:16 PM

Remember that even with low blood counts the percentages can still be in favor of the CML.  Hope for good things if you wish (don't let me disturb your dreaming), but also be prepared for news that does not line up with your "theory".



#9 scuba

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Posted 10 March 2011 - 01:33 PM

It's not the low counts in and of themselves.  It's the rate of re-population that is indicating "normal" cell growth, not leukemic.  But I concur with you about not getting hopes up.  I am fully prepared for a FISH result to be no different or higher than last time.  But - you can imagine how I will feel if I get 'surprised' and FISH is markedly lower.  And besides, I can live with being on low dose Sprycel (70mg) for only two weeks and then off for 8 weeks for many years.  That's o.k. with me!

I also heard back from Dr. Cortes.  I am now in the category of "uncommon".  He said that he would love to see a reduced FISH (and he will keep doing what he is doing).  I would be an anomoly at that point.  He has seen recovery  trajectories such as mine and it does turn out to be normal cells usually that are doing the recovering.  What happened to me after Gleevec was indicative of leukemic recovery.

Personally - I think the Sprycel did something higher up in the pluripotent stem cell line than Gleevec.  And Sprycel binds more powerfully to the TK socket.  Something in my version of CML has been disturbed - Dr. Cortes is sure of that.  LIke I said before, he likes Tasigna and Sprycel.  It allows him more options.  I am his experiment on watchful waiting.  He wants me tested (CBC) once a week and then when my counts can handle it, I go back on Sprycel - but now, he does want to see what FISH and PCR show before starting Sprycel.  If they are down a lot (order of magnitude), he will let me continue to let the counts rise into the normal range (2.0 for ANC !  what a high number) and verify stabilization.  If CML is active, my counts should continue through the range upward.   I think he will want to do a biopsy to find out exactly what is going on in my marrow although I won't vote for that.

But it is also possible, though unlikely, that Sprcyel or some other combination of factors  triggered an increased  NK/T-cell response (that has been reported) to the CML.   My lymphocytes have been very strong and only just this week fell back a bit (always in the normal range, but at the high end of normal).  This week for the first time, they fell back to low normal.  Maybe they did their job.

I am curious, Trey - do you find my still low count levels after six weeks off Sprycel interesting?  From a science point of view ...  So far what I am going through is now labeled - "uncommon".   That is either a good or bad thing.  What an adventure!


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"


#10 rct

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Posted 10 March 2011 - 02:44 PM

Michael wrote:

In 10 days I get back the FISH/bcr-abl numbers (intl. scale).  My last FISH was taken in January and showed 53% positive cells.  PCR showed 33% (I was at 155% at dx. intl. scale).  I had just started Sprycel (one week in).  Anyone care to speculate on what my FISH level will be when the results come in?

I would speculate they will be somewhere right around where they were the last time.

Our oncologists and the guy out in Portland would be telling us that neither CBC or PCR is any good without a functioning system, which you do not have.

Low FISH while not making anything?  Not hard to do, that would be the speculation that my experience with this has taught me.  Low FISH while making decent amount of cells, whether stim shotted or not?  That would be good news.  The drug either works or it doesn't, and it DEFINITELY doesn't work when you aren't taking it.  I wish I had said that, but I have to acknowledge that's Drukers not mine.

Michael wrote:


One thing is certain ... with the level of CML in my body in January, my cell counts should have recovered much faster than they are doing (normal + leukemic).  That is not happening - so something is up.  I am crossing my fingers that I am a miracle baby.

Yes, something is up.  TKI induced myleosuppression.  Lots of oncologists know about it, lots of CML patients know about it, lots are doing something about it.  None that I know of, and I have good reason to know it, have been anything else but that.

I wish the best for you, I really do.  Good luck with it and I hope nobody is offended.

Please remember that every minute, hour, day, spent fabricating way (compared to current experience) far out there scenarios of suppressed cancer and stuff without even measuring for it is time that could have been spent ACTUALLY figuring out the whole neutropenia thing and what to do about it.  For every one "miracle baby" there are probably a couple hunnert that are just plain old neutropenic needing intervention.  THEY need all the scientific thinking they can get, and I sincerely hope you do not end up there.

rct



#11 scuba

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Posted 10 March 2011 - 03:13 PM

"Please remember that every minute, hour, day, spent fabricating way  (compared to current experience) far out there scenarios of suppressed  cancer and stuff without even measuring for it is time that could have  been spent ACTUALLY figuring out the whole neutropenia thing and what to  do about it.  For every one "miracle baby" there are probably a couple  hunnert that are just plain old neutropenic needing intervention.  THEY  need all the scientific thinking they can get, and I sincerely hope you  do not end up there."

Then why is Dr. Cortes having me wait - doing nothing but measuring my CBC's once a week?   He cited data that suggests my "factory" is making good cells during the recovery from myelosuppression.  He did not want to do stim shots.  I asked and he said, let's not do that.   In 10 days, we'll see what FISH reports.   But I do concur with you and Trey that chances are, the FISH levels are not much changed.  Thanks for your thoughts.

p.s.  He did tell me he has done this with others with good results (i.e. hold off until counts return, then resume treatment, hold off when they dropped, then resume - and over time, the subsequent drop is less all the while the cancer level decreases (via PCR/FISH).  This is why he didn't even want to do a FISH/ PCR at this point because he feels I need to get back on therapy longer term with no myelosuppression before it will make a difference.  I understand his thinking, but hate not knowing.  And for the first time, he is curious about the "trajectory".  Most of his watchful waiting patients recover faster than this - and only his transplant patients does he see this path.  So...he labels me "uncommon".


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"


#12 rct

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Posted 10 March 2011 - 03:32 PM

We've done this.  Slow, molasses slow recovery of counts.  Six glorious weeks of having a martini whenever.  Awesome.  PCR?  From a big fat "u" to numbers, from numbers to ever higher numbers.  We here and Druker out there never once speculated that since her counts were not going up her PCR would remain flat or less, not ever.  And they were absolutely right to not speculate that.

PCR compared to CBC, for her, at that time, was moving at light speed.  Don't matter what yer whites and ancs and reds do, the cancer does whateverthehellit wants.  Seriously.

You can not speculate on what your PCR is based on your CBC any more than anyone could speculate that because of my Mrs' PCRUndetectable her counts were fabulous.  They WEREN'T!  And as her counts very inexorably moved teensie bits at a time, nobody but nobody was speculating that the cancer was doing anything but what cancer does, be more.  They went long enough and said that's it, stim shots and TKI.

I don't know why he's doing what he's doing, and it isn't my place to question it.  I would certainly hope that in the end you simply get to some point where, if your diagnosis is correct and nobody seems to think it isn't, you will resume treatment for the cancer and treatment for the neutropenia if you need it, and I hope you don't.

Of all the people that have done this, that's the only outcome, and the thing I can't understand the most is all the speculation based on whatever it is your counts are doing.  Lots of peoples counts have done the very same thing and not a one was cured!

It's a problem.  Period.  A known problem that there isn't a good solution for.  That known problem is getting bigger as more and more people live longer and run into it at later times, in varying degrees of seriousness.  It's a problem.  A Known Problem.  Treating it like it is something else altogether is, in my opinion only, inappropriate.

I hope it goes well and your FISH is non existent and they decide it was all a big mistake.  I wish you the best with it, and it resolves soon.  I think about you all the time.  I say these things because I care, and I'd rather your Mrs and kids and family got as much time with you in this world as possible, even if somewhat diminished and grumpy from the shots, than for you to go down some path to literally nowhere that has no basis in nothing anyone knows now.  That's why I say these things.

rct



#13 scuba

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Posted 10 March 2011 - 05:14 PM

RCT wrote,

"I don't know why he's doing what he's doing, and it isn't my place to question it.  I would certainly hope that in the end you simply get to some point where, if your diagnosis is correct and nobody seems to think it isn't, you will resume treatment for the cancer and treatment for the neutropenia if you need it, and I hope you don't."

That's the key point  - treatment for Neutropenia by Dr. Cortes in my case is to stop Sprycel, wait for counts to recover, then resume Sprycel - maybe at a lower dose.  And to keep doing this - stop and start until a re-balancing is accomplished and my body no longer goes into myelosuppression.   I suspect I will have the rest of this year in this mode.  Dr. Cortes told me he has had much success doing it this way using the newer TKI's. 

As far as speculating on the rest - I enjoy speculating.  We'll know in 10 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"


#14 Tedsey

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Posted 10 March 2011 - 10:08 PM

I wish the best for you Michael.  Just a note, when I was taken off the TKI the first couple of times, my numbers didn't really recover either.  However, the onc got very nervous because it was taking so long and I had nothing to fight the cancer.  So, after a consult with Dr Druker, I was given stim drugs.  My second onc followed suit.

Teds



#15 valiantchong

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Posted 11 March 2011 - 11:21 AM

Base on the current statistic on Gleevec mylosupresion is not a good sign. However no one knows the impact of Sprycel induce mylosupresion. The mechanism of drug causing the supresion is not known, hence do not need to be too worry, if you are in close monitoring. I believe the doctor has every reason to believe his theory is working base on his experience with other patient.

It is resonable to believe that if stimulate shot able to increase blood count, it may be also activating the LSC more than normal blood stem cell. I believe since CML is slow progress sickness, I think without TKIs the rate of normal blood stem cell will increase faster than the LSC. So it is logical to wait, than to use stimulate shot. If stim shot is use it may cause increase of LSC faster than normal blood stem cell. It be risky..., I agree with the Dr... 



#16 cpsn0000

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Posted 11 March 2011 - 06:02 PM

Mike,

I am curious about your situation. Here is my email address. Shoot me an email and maybe we can discuss exchanging numbers via email.

snavarrojr@gmx.com

Sal



#17 scuba

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Posted 12 March 2011 - 09:27 AM

I am not sure if Sprycel or any TKI actually causes the myelosuppression.  I believe the myelosuppression is caused by the relative sudden apoptosis of Leukemic cells.  The result is a sudden decrease in cell counts.  As the debulking continues, the body should begin to re-populate with normal cells and over time the myelosuppression decreases even with TKI presence.  Some people re-populate quicker than others and never have to be stimulated or otherwise taken off their drug. 

The procedure my Oncologist is following is to keep pressure on the leukemia as long as possible and then let the blood system return to normal.  Although some leukemia is bound to return, the newer drugs act so much faster.  This cycling (on and off of TKI) is believed to be effective at re-balancing the blood with normal cells and effectively reducing the CML to CCyR or better (PCRu) within the same time frame (18 months).  Dr. Cortes has told me that he has patients going through what I am going through (although my rate of recovery is "uncommon") and he has brought them to PCRu relatively quickly.  He is anticipating that I will not suffer severe myelosuppression in the longer run.  He believes that each time I resume Sprycel, my drop in Neutrophils will not be as low and ultimately I will be able to stay on the drug and drive the leukemia into remission.  That is the game plan.  He said Sprycel is working for me (whatever that means).  He expects that once I can stay on Sprycel, I will get to CCyR in 3 months or less.


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"





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