Jump to content


Photo

Week 4 withoutTKI


  • Please log in to reply
36 replies to this topic

#1 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 24 February 2011 - 10:49 AM

Well ... it's been 4 weeks without taking any drugs (Sprycel) and my CBC's are:

WBC:  1.8
ANC:   0.33
PLT:  185

RBC:  3.41 (lower than last week by a small amount)
HGB:  11.6
HCT:  34.2

The Oncologists are curious and may order a FISH/PCR to see what's going on.  It's interesting that when I was on Gleevec it put me into myelosuppression after 4 months and when I went off Gleevec, my platelets jumped within days to over 800.  After my counts recovered (only took a few weeks to get much higher numbers than I have now) I went on Spyrcel and after only two weeks (low dose also) - my cell numbers plummeted again and my PCR kept falling also.  Now, after 4 weeks of no Sprycel, my counts are still slowly rising with platelets not spiking.

I may be a candidate for a natural remission study (wouldn't that be nice).  I may be allowed to stay off TKI and my blood more closely monitored to see if it levels off in the normal range.  Normally, they would put me back on Sprycel when ANC reaches 1.0 - but this time, they may let it continue to rise above 2.0 (which is the lower end of normal) and see what happens (and at the same time measure PCR/FISH).

What a strange course of events.

No worries, Trey - I know I have CML - but these numbers are interesting.  I just wonder what is going on in my body that has caused the CML to go quiet after Sprycel but not go quiet after Gleevec.  The mild anemia, I was told is a consequence of the relative long life of red blood cells.  My myeloid line is only slowly coming back (the slowness is indicative of a normal system recovering from 'trauma').

By the way, Cherylannes, I asked about pegylated interferon and the doc's said that it could be myelosuppressive to me right now (Dr. Cortes) - but he didn't rule it out for later. 


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

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 24 February 2011 - 10:58 AM

I would want a FISH at minimum, as discussed previously.



#3 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 24 February 2011 - 11:05 AM

I have asked for FISH.  They want to wait until my counts recover.  The decision point is whether to wait until my ANC gets to 1.0 or until it gets to 2.0.

Dr. Cortes is not concerned about "Blast" crisis at this point (I am concerned about it).  He did not explain why (even though I asked).

Do you have any speculation on what's going on?  Why the very slow rise, platelets not jumping after a month of no TKI?


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 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 24 February 2011 - 11:17 AM

It makes no sense to wait until ANC rises to do a FISH.  You need close monitoring.  They are blind without testing.  Don't trust the CBC to tell the story.

These things do not go in a straight line.  It will take off rapidly at some point without therapy.  For now, the leukemia is regrouping.



#5 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 24 February 2011 - 11:25 AM

I agree with you (although I don't know what "regrouping" means.  CML cells do not have a brain.  It's just biochemistry.  Gaddafi is regrouping).  Dr. Cortes says it is too early to do a FISH.  I have asked.  He absolutely wants to wait until my ANC gets at least above 1.0.

I will press again for a FISH.


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 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 24 February 2011 - 12:54 PM

re·group (r? gro??o?p?)

intransitive verb:

"To reassemble or reorganize, as troops after a battle"

Your analogy to Gaddafi did not resonate with me, especially that brain thingy.



#7 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 24 February 2011 - 03:12 PM

Strangely enough, I was rereading Jerry Mayfield's trial diary today from the original Sprycel phase 1 trial and they had a patient who's counts were hammered fairly instantly, came back very slowly during a long drugs break, and when they did they were amazed to find a good percentage of healthy cells.  I'm not saying that's likely to happen in your case, but I'll keep my fingers crossed for you.



#8 LCasey

LCasey

    New Member

  • Members
  • Pip
  • 0 posts

Posted 24 February 2011 - 03:57 PM

Michael- I have also had some trouble with myelosupression. One month on Gleevec 400mg and then off for three months for counts to recover. Then tried Gleevec 300mg, same thing, took it for about one month and then has taken another three months for my counts to recover.

My question for you is why you made the decision to switch to Syprcel instead of Tasigna? I'm due to take my first Tasigna pill tonight and I am just wondering. 



#9 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 24 February 2011 - 04:47 PM

Thanks PhilB for the reference.  It seems I am tracking almost identical to the patient you cite.  I had an immediate "positive" reaction to the Sprycel that I did not have with Gleevec.  And I have a suspicion that Dr. Cortes knows this and is putting me through this "watchful waiting" to verify.  Although Trey is certainly correct that I need a FISH to confirm - there is speculation that the percentage of my cells coming back are the normal ones and not leukemic.

So I am hopeful that Sprycel is doing something very positive for me.

On the question from LCasey regarding why Sprycel and not Tasigna - it was largely my choice.  I wanted a different molecular structure from Tasigna.  Tasigna is modeled after Gleevec just fits more tightly into the molecular pocket.  Sprycel does more than just occupy the 'pocket' - it blocks other pathways that enable CML to circumvent Gleevec.  Also - it helped that I can eat/drink when I want and not worry about two times per day timing to when one eats.  And for me - the greater benefit is that I don't need a lot of Sprycel.  70 mg. gave a heck of a punch.  They think I might only need 20 mg. to get the balance right.

I am praying that my body somehow has figured out how to beat this on its own and that the Sprycel just bought me time and relieved some of the burden.  I would love to have the FISH done and find zero cells with PH+.  Now that would be something.  Personally - I suspect that Sprycel has done something to put the leukemic line in some sort of stasis.  It's there - just not growing.

Of course - it's just all guessing.


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 valiantchong

valiantchong

    New Member

  • Members
  • Pip
  • 0 posts

Posted 26 February 2011 - 09:51 AM

HI Mic,

Just hang in there, sending best wishes to you, hopefully you'll recover soon...

Take care.



#11 LCasey

LCasey

    New Member

  • Members
  • Pip
  • 0 posts

Posted 26 February 2011 - 07:16 PM

Thank you for the information Michael. I agree with you in that Sprycel seems like an easier pill to take. I'm only on a half dose of Tasigna, taking it once a day- and I'm already having some issues with timing. I am not looking forward to all the time constraints of when I can, or cannot eat. Does a tic-tac count? You know? Ugh. But oh well, I will just be thankful if my counts are able to stay within a somewhat normal range on Tasigna.

Best of luck to you. I'll be interested to see how your counts recover and what direction your doctor wants to take.



#12 rct

rct

    Advanced Member

  • Members
  • PipPipPip
  • 77 posts

Posted 01 March 2011 - 08:46 AM

I wish they would find out if your system works, one shot of neupogen or even better a Neulasta, they'd be testing you the next day.  In all of our almost three years of experience with this situation, none would agree with what you are doing.

Using CBC to discuss leukemia is not appropriate as far as we know, the CBC is used to check her hematologicalisiticizedational status, not cancer.  While I may think I understand why they aren't testing for cancer, I would still be wanting it checked.  It is, in their minds, safe to assume that if the system isn't making anything it isn't making cancer, right?  But I would always take the opposite and fear that if the system isn't making anything I don't want the few that it is making to be wrong.

Michael I am thinking about you every day brother, I hope this gets resolved very soon and you can get on with it.  It's an enormous distraction from an already really badly distracting situation.  We're off to the Cancerre Emporium today, and of course all we can think about is counts counts counts, need them to be good.  In our case, we have lots of PCR stuff to back us up, and I wish you had that as well.  Good luck friend, keep us posted.

rct



#13 PhilB

PhilB

    Advanced Member

  • Members
  • PipPipPip
  • 130 posts

Posted 01 March 2011 - 09:14 AM

This makes it over a week without anyone hijacking your thread?  Is this a record?

Any news yet on when they are going to test you?  I think we're all keen to know what's going on in your marrow.



#14 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 01 March 2011 - 09:23 AM

Both Dr. Cortes and my other Oncologist want me to stay off everything until my counts recover (I am in week 5 of no Sprycel).  There is data to suggest that when counts recover from severe myelosuppression (ANC = 0.1 = severe) while under Spyrcel; the recovering cells are normal.  They do not want to test me via FISH for THREE more months following my re-start on Sprycel.  They will re-start me on a lower dose Dasatinib after my ANC goes above 1.0.  I am asking them to let my counts get to  ANC= 2.0 before I re-start AND I want to have a base FISH done to see what's going on at the "cancer" level.  I have not received an answer yet.  It is possible that a new FISH will show a marked drop from my last one.  I want to verify that it is not due to Dasatinib.

There is consensus in the medical community (and Trey) that once you test positive for bcr-abl - you have CML.  And sooner or later it gets you if you don't have treatment.  There is also emerging consensus in the medical community (not Trey) that stopping TKI does not induce mutation leading one to become resistant to re-started treatment (hence what Dr. Cortes is doing with me and the basis for the cessation trials in Europe).

Therefore, I am in a position to conduct an experiment:

Stay off the TKI and watch what happens on a weekly basis which is what my docs have me doing now.  What does my blood do hematologically over time?  Do my counts stabilize?  And if they do, what cell types are they?  I am tempted to stay off Dasatinib to see if my counts keep rising above the normal range (too high), and if they do, I go back on Sprycel.  But if my counts normalize and they do a FISH and my counts on FISH are ZERO - then I am functionally in remission.  My body is able to deal with the aberrant cells.  Am I cured - NO.  But I may have years of not having to take any drugs until it pops up again.  That is my hope.

Keep in mind - because my cell recovery - and particularly the platelets are very slow recovering following Spyrcel induced mylosuppression,  there is a hint that my blood system is normalizing.  When Gleevec put me into myelosuppression (no where near as fast as Sprycel) and I went off treatment, my platelets shot up like a rocket within a week, followed by rapid rise in my WBC's to normal range the following week.   On Sprycel - my counts plummeted within two weeks and I have not recovered in almost 5 weeks since cessation.  There is something very different going on this time.  I believe that is what Dr. Cortes is curious about.  He says every one of his patients is "unique" - no one size fits all.  And so - I am his lab rat.


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"


#15 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 01 March 2011 - 09:28 AM

Yeah ... If I write that the presense of bcr-abl in blood does not mean one has CML - then this thread will get hi-jacked, so I won't write that.


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"


#16 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 01 March 2011 - 09:34 AM

By the way - since many of our friends on this forum are genuinely interested in my case (the path the docs have sent me on) - I do want to let you know that I feel great!  I need to exercise more (weather warming helps), but I don't feel "anemic" and sluggish like before when I was on the drugs.  My wife has me taking all kinds of vitamins including the Indian spice Curcumin.  Lots of folate and B12 along with vitamin C and vitamin D3.  I do admit I take more vitamins than I ever did.  And yes - 2 glasses of wine per night except on weekends, then it goes to 3 (or maybe more ...).

And I maintain a "mental" image of no CML in my blood.  I think about eradicating every aberrant cell as a mental exercise.  And I don't 'fear' this disease.  I simply refuse to let it affect me like that.  A Charlie Sheen kind of denial maybe ...


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"


#17 rct

rct

    Advanced Member

  • Members
  • PipPipPip
  • 77 posts

Posted 01 March 2011 - 10:00 AM

In your first paragraph you indicate that you want to verify a drop in yer FISH that is NOT due to dasatanib.  I think.  If that is the case, I very very seriously wish you good luck with that conclusion.  You are in a place we have been, and not a whole lot of what is going on inside of you will make much linear sense.  Your FISH could be 100% and it could be 0%, but I wouldn't place too much value on it until you have done whatever it takes to have a functioning marrow.

The consensus amongst the illuminattii was NEVER that the so-called resistance would happen, I have that from quite a few recognized experts in the field.  I believe virus and/or bacteria do that, cancer does not seem to do that at all.  It DOES mutate around things that crop up occasionally.  I agree with your second paragraph about that.  As for "cessation trials in Europe...", well the only one that I know of, the STIM in France, that is long over.  I do understand the hope that something like this presents, but it needs to be seriously looked at for what it is and not for what any of us may hope it is.  It was a very small number of people and I think that the conclusions were great for about a week after it was done.  I don't know of any others, our oncs know of no others and have cautioned us that the world is a very very very long way away from anything like this realistically happening for even the BEST of the CML patients.  Of which my Mrs is not one, but we can always hope.  If you can seriously safely say "trials" plural, where others have stopped TKI and been followed, please show me the others because I want to read about those too.

You are in a position to be experimented with, and we've done this experiment.

Your fourth paragraph just defies medical treatment outside of a clinical trial setting with (x) number of patients doing what you are doing and all of the appropriate measures being taken.  Suffice it to say that hopefully your counts will go back up over time.

After nearly 8 weeks off TKI in the summer of 2008 an executive decision was made to go with the grower, because she was nearly where you are in terms of slowness of upward movement, but she started up close to 1000, where you are just way too low.  Keep in mind that this was the initial separation of the two, that in all cases of TKI induced myleosuppression which we hope you have, the CBC had no effect on cancer counting, and cancer counting was consistent no matter what the CBC, as long as we treated both.  I hope you find the same and soon.



#18 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 01 March 2011 - 10:13 AM

Your Onc is blind with no testing.  That is akin to "what you don't know won't hurt you".  This is CML, it is a snake, it does bite.  Thinking about what might be happening vs simple testing to see what is happening is a no brainer in my book.  You may actually need long breaks, but that does not mean you don't need close monitoring through testing.

The issue of inducing mutations does not apply to short drug breaks.  But CML can gain advantages during prolonged lack of treatment, many of which do not include mutations.



#19 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 01 March 2011 - 10:20 AM

I wonder why - Dr. Cortes does NOT want me tested until 3 months after I re-start Sprycel?  I want to be tested at the re-start point so I have a new base from which to compare (so I agree with you).  Dr. Cortes is an 'expert' in the field and many patients have nothing but praise for him - so I assume he knows what he is doing.  I did have the PCR at the beginning of this recent stopping point (4-5 weeks ago) and it was 33% (International scale).  The numbers have always been dropping (started out at 155% at diagnosis 10 months ago).   Cytogenetics however in the bone marrow were 100% before Sprycel (hence Gleevec failure).  I won't know anything more until a new bone marrow test.

Regarding my count recovery (per RCT) - my counts are recovering.  I was at a low of 0.12 ANC, last week I was at 0.37 ANC (platelets rising into the normal range and staying there a few weeks prior).  I get a CBC test again in two days and I expect the counts to be above 0.5 ANC but probably below 1.0


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"


#20 rct

rct

    Advanced Member

  • Members
  • PipPipPip
  • 77 posts

Posted 01 March 2011 - 10:45 AM

I would guess that since you were in 10s of percents in FISH testing he probably feels that it isn't worth testing to find out what he probably already suspects, in the10s of percents at best considering no TKI for this long period.

I would certainly hope your ANC would soon begin to show exponential increases.  Hers did, but we were PCR'n right along with the CBCs.

As a side note:  We have pretty darn good insurance.  I can assure you and anyone else watching, when you start PCR'n very frequently, the kind that some have alluded to happening in the world for a variety of reasons, the insurance company(ies) get pretty nosey about it.  Count on it.

Her PCR left Uville and started becoming point followed by three zeros then a number.  Once it got to point then two zeros then a number they decided to use grower and restart TKI.  That quickly led to counts up and slowly back to point then three zeros then a number and a U again about...year later I guess.  Maybe less time than that.

I personally have no doubt about your docs knowledge, skills, and abilities.






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users