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Personal cessation trial continues.


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#1 scuba

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Posted 15 May 2015 - 08:13 AM

I just received my third month's PCR result since stopping Sprycel back in February.

 

PCR - 'undetected'.

 

Trey - it's cheerleading time.

 

Last test had a detection. I felt ... o.k. here we go - the inevitable jump. Not so. 

After 3 months off Sprycel, I get to continue my new protocol. No TKI.

 

I passed the first hurdle - most relapse following cessation occurs within the first 3 months. And it is usually a big jump (one log or more). The next hurdle is at 20 months when CML seems to have a second bite at the apple. But as many here know, I have my theories.

 

So far so good. I am excited. Cheerleading in fact. 

 

I have asked M.D. Anderson if I can scale back my PCR testing to 3 month interval. I suspect they will tell me no - that I should continue monthly testing. And I'll be o.k. with that.

 

Thanks to all on this forum for support and encouragement - and - debate (Trey). I get to go another month (maybe 3) without a Tyrosine Kinase Inhibitor in my body.

 

Trey mentioned he'll believe this is "real" if I go 12 months this way. o.k. - we're into month 4. 1/3rd of the way there. I know you're rooting for me Trey, even though you believe this won't work. For now, I get to remain in the cessation club with PhilB and the rest.


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 Frogiegirl

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Posted 15 May 2015 - 08:19 AM

Give me an 'S' give me a 'C' give me two 'O''s ok ok just give me a SCOOBS! I have cml I'm too tired to finish lol! Congrats!

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#3 Kellyb333

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Posted 15 May 2015 - 08:41 AM

That is so exciting, congratulations!!

#4 scuba

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Posted 15 May 2015 - 08:53 AM

Thank you ... it feels good - I get to go another month without Sprycel. We don't even have the bottles in plain site anymore. 


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"


#5 rcase13

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Posted 15 May 2015 - 10:36 AM

Thats awesome. Life without TKIs... I can only dream...

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#6 Louise1403989338

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Posted 15 May 2015 - 11:29 AM

Scuba,

 

That is such great news!!!  I have been checking to see if you received your results, and was a little nervous for you.  So happy for you and so happy for many of us who may one day see a happy end to permanent tki.  Have a wonderful weekend.  Your news made my day.



#7 scuba

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Posted 15 May 2015 - 11:40 AM

I heard back from my Oncologist at M.D. Anderson. I have a new protocol as a result of my results.

 

I am to continue monthly testing for the next three months. If no change - then I will be placed on a two month testing program (PCR every two months) for the next six months. What happens after that will be decided then.

 

I was also told that the highest risk for relapse following cessation is during the first six months (although it's a bell curve - I am at the peak right now). After that, I have an excellent chance on remaining TKI free for a long time if not permanently if my results continue the way they have been.

 

Thanks to everyone for well wishes (both public and private). It is very much appreciated!


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"


#8 TeddyB

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Posted 15 May 2015 - 02:09 PM

Great news!!! Happy to hear, lets hope this continues :D

 

In accordance with tradition, i raise my wine (red) glass and salute good news from this board, cheers :rolleyes:



#9 Gail's

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Posted 15 May 2015 - 05:08 PM

That's great news Scuba! Will be watching your progress. Dreaming of TKI free life someday myself!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#10 acl

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Posted 15 May 2015 - 05:48 PM

So happy for you! Congratulations Scuba!

 

acg


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#11 snowbear

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Posted 15 May 2015 - 06:38 PM

Great news!!  I hope you continue to make progress and stay TKI free.  :)



#12 Terran

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Posted 15 May 2015 - 10:26 PM

Give me an 'S' give me a 'C' give me two 'O''s ok ok just give me a SCOOBS! I have cml I'm too tired to finish lol! Congrats!

ditto

#13 DebDoodah22

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Posted 16 May 2015 - 08:41 AM

It would be great if theses approaches led to different medical protocols.
This is very exciting to watch...you must be thrilled and the family,well just great stuff.

#14 pammartin

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Posted 16 May 2015 - 08:47 AM

Excellent news! Every month you stay off TKI is a gift. Enjoy your undetectable and the sun. Although you seem to be in a bit of a rain deluge these days. There is always surfing or diving, you are wet either way. Congrats Michael, on to month 4!

#15 CMcLain

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Posted 16 May 2015 - 08:28 PM

Such wonderful news Scuba! Incredibly happy for you and for the rest of us in this elite group. ๐Ÿ˜‰
Charissa

#16 gerry

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Posted 16 May 2015 - 11:41 PM

Hi scuba,

 

Congratulations 

 

I'm interested as to whether your testing regime changes after after six months. I'm still at every two months even though I've been 18 months off Gleevec. There doesn't seem to be any consistency for testing at the moment. May need Dr Cortes to write some rules. 

I know of others at three months and also six months (after 2 years of being off TKI).



#17 Pin

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Posted 17 May 2015 - 06:53 AM

Wow! Unbelievable - I'm so happy for you Scuba!
If you asked me when I was first diagnosed about this I would not have believed it was possible. This is seriously blowing my mind - I'm so glad so many people are able to try this and are succeeding (at least for now hey!) Fantastic news!

Also- PhilB?? Did I miss that?

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


#18 scuba

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Posted 17 May 2015 - 06:56 AM

Hi scuba,

 

Congratulations 

 

I'm interested as to whether your testing regime changes after after six months. I'm still at every two months even though I've been 18 months off Gleevec. There doesn't seem to be any consistency for testing at the moment. May need Dr Cortes to write some rules. 

I know of others at three months and also six months (after 2 years of being off TKI).

 

After six months I will go on a two month testing cycle and then six months after that (which will be one full year) I will go back to the original 3 month testing program. After another year I will go to a six month testing and stay that way I suspect for 3 more years (5 years total off TKI). Then it will be once a year thereafter. 

 

This is not a "rule" yet - M.D. Anderson is doing its own cessation trials. I have learned they are not formal in the same way as in France. People who stop are tracked and put on a one month program. They have enough data collected to know that most relapse's peak at the 3rd month (6 month bell curve) and decrease to very low by the six month (hence the switch to 2 month testing). It is the bell curve response that informed Dr. Cortes to tell me not to get to excited when I passed the one month mark. He said lots of patients get to the one month mark with no change. But he did say that now that I have succeeded at 3 months, "things are looking up". But still monthly testing for 3 more months. 

 

I am an outlier because I started significantly before the two year mark following continuous PCRU/MMR and I wasn't forced to stop because of any side effects I could feel (except the mild anemia). Many of the cessation patients they have are cessation patients because of side effects (pleural effusion for Sprycel is a significant one) which forced them to stop treatment. When they did stop treatment  - they did not relapse, so they are keeping them on the above protocol and off their drug because the risk of Blast crisis from PCRU/MMR is near zero. Some patients elected to go back on their TKI despite lack of relapse and they accommodate those patients. It just shows the psychological power of CML (the fact that it is a "cancer" and that scares a lot of people for all of the normal reasons). 

 

M.D. Anderson has quite a database now of cessation patients. I don't think they have published on it anywhere (I haven't asked). They call it internal experience throughout the M.D. Anderson system that guides what they do. 


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"


#19 scuba

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Posted 17 May 2015 - 07:14 AM

Wow! Unbelievable - I'm so happy for you Scuba!
If you asked me when I was first diagnosed about this I would not have believed it was possible. This is seriously blowing my mind - I'm so glad so many people are able to try this and are succeeding (at least for now hey!) Fantastic news!

Also- PhilB?? Did I miss that?

 

Trey has a theory that LSC's (leukemic stem cells) may burn out after a period of time and that when they do, functional cure is possible. I have read that his theory is actually quite likely and I subscribe to this thinking. LSC's are unstable it turns out. They create daughter stem cells (LIC's) that keep the leukemic population going until hit repeatedly by TKI's. Modeling research suggests that LSC's are largely burned out by 5 years on their own. Most by 3 years. This is intriguing because it suggests that functional cure is occurring without us knowing it. The LSC's simply go away leaving behind the self-renewing daughter leukemic cells. The CML cells that remain and self-renew (higher order cells) are reduced in number over time by the TKI's. But can be eradicated - or as some now think - cease division and eventually clear out. This is a working model for why cessation seems to be working for a significant pool of patients. It's all just speculation, but seems reasonable given what's happening.

 

On the psychological side, many patients (and Trey is one of them) will not stop taking their TKI no matter what. They may lower dose or even interrupt dose, but they feel that until there is a proven scientific cure for CML (a chemical that eliminates the LSC from the start) they must continue taking their TKI. And that is quite understandable given the fact that CML was a death sentence just a few years ago. And for those arriving already in Blast crisis - treatment is very difficult (although excellent progress is being made). 

 

For me - I will always feel I have CML. Even if they were to "claim" a cure - I could not envision myself not getting at least an annual PCR check to verify. Once you have CML - it's scarred in your brain. So I don't think I am cured, I just think, I might be able to continue TKI free - for now - and maybe forever.


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 azteri

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Posted 17 May 2015 - 05:55 PM

I'm on Gleevec. The last time I saw my onc. he mentioned trials to go off it, which I had heard of before. I had a great and early response, so I'm hoping one day, I'll be on the other side of TKIs.






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