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Almost - 'Finally Gotta Zero'


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#1 scuba

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Posted 23 November 2011 - 12:58 PM

I received my PCR results from M.D. Anderson and after 5 months of steady 20mg. Sprycel, I went from PCR = 55% (May 2011) to PCR = 0.5%  (3 months ago) to PCR = 0.12 % (intl. Scale) (today).  (Dx at 155% PCR May 2010).

Dr. Cortes told me that I am very close to MMR and that in his words, "... these are indeed a very very good result".  I meet with him next week to talk about Curcumin.

Looks like I'll live. 

I am very curious about low dose as a therapeutic choice.  It does seem that low dose can help patients achieve MMR and beyond and help avoid the side affects.   In my case, Dr. Cortes prescribed this path in order to manage myelosuppression.

These results have been achieved while enjoying fine Bordeaux's and an occasional Arturo Fuente & Montecristo.  So enjoy living.


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 Tedsey

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Posted 23 November 2011 - 01:00 PM

You too, Michael.  Glad to hear your numbers are headin' downward!  I'll clear out my mailbox!

Teds



#3 janne

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Posted 23 November 2011 - 10:14 PM

Congrats to you Michael on your latest PCR ! And to borrow from a few other threads.. All of us imaginary friends (BIF's) are toasting you with our imaginary chocolate martinis (courtesy of Tedsey) until we can join her in person ...(all the while consoling Trey who has some recent concerns about imaginary chocolate martini-induced fat butt syndrome)...but for YOU, we will also raise our imaginary glasses of fine Bordeaux to celebrate your wondrous occasion...awesome job you and your curcumin ! Great reports this week ....we give thanks!


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#4 Pin

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Posted 24 November 2011 - 06:17 AM

Super news Michael - it's really great to see that the trend is sticking especially given your history of myelosuppression and subsequent lower Sprycel (+curcumun) dosage :)


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#5 scuba

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Posted 24 November 2011 - 07:23 AM

Thanks all.   It does seem that the trend is holding.  The myelosuppression is still there and it is believed that the Sprycel is the cause.

As many know on this board, I want to test remission durability by getting off Sprycel - but given the trend, it will be a long time.  I had hoped that I would have had a more dramatic drop than I have experienced PCR = (0.5 to 0.1 in 3 months).  I was hoping for a few more decimal places and 'finally getta zero'.  But not to be.

There is evidence now that Curcumin works well with Sprycel.  M.D. Anderson is very interested and there may be a more rigorous scientific trial set up to investigate (analagous to the Colon cancer trial).  I probably won't be part of the trial since I am doing my own thing (different Curcumin combo's based on my research).


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 pammartin

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Posted 24 November 2011 - 07:50 AM

Janne, it is way too early to laugh that loud in this house!  Thanks for the Thanksgiving chuckle!



#7 Happycat

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Posted 24 November 2011 - 11:35 AM

Michael,

Congrats, all is going in the right direction.  I'm interested in how well you are doing on such a low dose.  Does Dr. Cortes think it works that well at a low dose because of a synergistic effect of cur curcumin?

Traci



#8 tiouki

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Posted 30 November 2011 - 04:17 AM

Hello scuba, glad to here your are doing well and this low dose srpycel works well .

Just for information, I am on a therapeutic trial with Professor Rousselot in France (the one would did the STIM Stop Imatinib study). The aim is to limit sprycel side effects by measuring residual drug concentration in the blood. The residual dose is of about 1 to 3 nM (nmol/L) in the blood . For the 6 hours that follow drug intake this concentration reaches about 100nM (with 100mg Sprycel).

And the interesting thing is that he told me that sprcyel is so effective they think that an increase to 20nM (so 1/5 compared to people usually get) is enough to deal with CML.

My point is I am not surprised that you are doing well with 20mg Sprycel, regarding these numbers.

I just wanted to share this I think it's interesting about sprycel effect.

One last thing : in my trial they want to keep the residual drug below 3nM in the blood, because they think that this residual drug may be responsible for pleural effusions. At my first test I had 1.4nM so I have stayed on 100mg (If I had more than 3nM they would reduce sprycel dosage).

That's all, good luck !



#9 scuba

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Posted 30 November 2011 - 08:25 AM

Hi Tiouki,

Thank you very much for this information.  It makes a lot of sense especially in my case.  Once I was able to stay on Sprycel continuously without drug interpurptions - the 20mg. I was prescribed (1/5 normal dose) has delievered a remarkable drop in PCR (and soon I should know about the bone marrow cytogenetics).  I see Dr. Cortes at MD Anderson on Friday and I will ask him about Professor Rousselot's work.

Most important is that for people taking Sprycel or thinking about switching to Sprycel - one does not have to live with the side affects by taking full dose.   I have a suspicion that since I still have myelosuppression (mild, but not insignificant) - it is pretty clear to me that the 20mg. sprycel is packing quite a punch.  The Curcumin I am taking may be augmenting the small dose's affect.


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 SB3

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Posted 30 November 2011 - 08:34 AM

Congratulations! So glad to hear that all is going well with you. I've been following your story closely, as I've had trouble keeping my blood counts up on Sprycel as well. Just started taking 80mg after the counts tanked on 100mg. I'm only two months from dx and am nervous to go lower until my first PCR test next month, but your results give me hope that lower dosages are, indeed, effective. I'm also curious about the curcumin and will discuss that with my oncologist (or at least my new one that I see next week). Thanks for keeping us updated on your great progress!



#11 scuba

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Posted 30 November 2011 - 08:48 AM

Your Oncologist should call Dr. Cortes and discuss.  Dr. Cortes put me on 20mg. immediately.  He didn't lower my dose gradually or scale me down.  His primary concern was myelosuppression (low counts) and not wanting me to take another drug break.  He also did not want me taking stim shots to boost Neutrophils.  He told me, "lets start with 20mg. and work up from there if we need to".  As my Neutrophils did stay around 1.0 - 1.5, the fact that my PCR was dropping significantly led Dr. Cortes to keep me where I am.  I even asked him could I increase dose to get a faster response and he said no (pretty emphatica about it too, I might add).  He said 'more is not better or faster'.  He said, he wants to get me over the "threshold" and that's all that is needed for response to occur.  He has had a lot of success with patients at 20mg.  I am one of "many" - which was very reassuring.  I believe he knows what he is doing.  (and I have his curiosity with Curcumin).

Watch your blood counts very closely (CBC once per week).  At 80mg. - you may find that your counts drop quickly below satisfactory and they will have to stop Sprycel altogether so your counts can recover.  But as your counts recover so is the PH+ chrmosome.  You really don't want that.  Knowing what I know now, I would have started with Sprycel at diagnosis and at only 20mg.  More is not better in this case.  But that's hindsight.

Remember, I was put on 20mg. immediately following counts tanking at 70mg.  If you find that 80mg. doesn't work - ask your Onc. why a 20mg. regimen is not recommended. 


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 SB3

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Posted 30 November 2011 - 09:08 AM

Thanks -- I will definitely suggest my new onc call Dr. Cortes. I am just coming off a drug break from Sprycel at 100mg -- my current onc wanted me to restart at 50mg but, being so newly diagnosed I was much too nervous to do that. And the onc never explained her reasoning to me -- in fact, when the counts dropped, she didn't even see me but had the nurse act as the courier between the two of us. That's partly why I'm going to see a new onc -- that, and the fact that she didn't order weekly CBC counts, which likely would've caught the mylosuppression much earlier. I didn't know enough then to request them. But now that I know there are people getting good response with 20mg, I'm not quite as nervous about lowering the dose as I was before.



#13 tiouki

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Posted 30 November 2011 - 09:32 AM

Hi SB3,

Maybe you said it elsewhere but what were your blood counts at 100mg sprycel?

It is normal that at first they all go below normal range (red, white and platelets). But this gets back to normal within a few weeks/months. You can also get erythropoietin to increase the red cells (a low red count => anemia => fatigue), I had 2 injections at the beginning that really helped to get from 10g Hb => 14g Hb.

The normal lower bounds are >5000 for white cells, >13.5g for hemoglobin (directly related to red count) and 100 000 for platelets. But you can tolerate values below that at first. (minimum 50 000 for platelets, 9/10 for Hgb etc...).

What I mean (sorry english is not my mother langage) is that you may be able to stay on 80-100 mg sprycel for some time if the transient cytopenic effect is tolerable, and then your counts should increase.

Wish you the best

Pierre



#14 SB3

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Posted 30 November 2011 - 09:47 AM

My counts were a bit low: WBC 2.6; RBC 3.24; HGB 10.7; HCT 32; ANC 1. My platelets have held steady at around 182,000. I was also having some symptoms (fatigue and lightheadedness) that caused my onc to recommend the drug break. The counts did rise back up after a week off of Sprycel. I've been back on it for 5 days and go for bloodwork next Monday. Because my neutrophils were right on the edge, I think I could've gone a few more weeks to see if the counts stabilized (based on what others have posted here). I'm seeing a new onc on Tuesday as I'm not entirely comfortable/confident with my current onc (she lacks communication skills and doesn't seem to be following the protocol with testing). I'm hoping the new onc will be better.



#15 tiouki

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Posted 30 November 2011 - 09:53 AM

Ok I see, I think the fatigue symptoms were directly linked with anemia. At 10 I felt sooo tired. At 12 I was ok. At 14 I have A LOT of energy. You should speak to your onc about erythropoeitin it's harmless and quite effective. For information I had two injections of 1mL of Eprex 10000 UI/mL separated of 1 week between both. Another week after I had went from 10 to 14 and was no longer tired.

For neutrophils mine were quite low too, about 2.6 if I remember correctly, the global white count was 3900 at this time.

I think your numbers are normal so don't worry and try to keep sprycel (at least a reduced dosage) your counts will be normal very soon

Good luck!






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