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#21 Trey

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Posted 24 February 2015 - 10:25 PM

Look where you would expect a thingy to be.  Remember this is a bear.  A male bear.  Are you sure you didn't mean to post on the thread "Drinking on Gleevec"?  Just sayin'

 

You people really are trying to get me slapped with a "warning point", aren't you?  Brooke is watching.  She's everywhere.....


Edited by Trey, 24 February 2015 - 10:27 PM.


#22 pammartin

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Posted 24 February 2015 - 11:02 PM

I need to post on the drinking thread. Male bears and thingy-ies? Billie, I need to steal your bottle again.

#23 Billie Murawski

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Posted 24 February 2015 - 11:42 PM

Look where you would expect a thingy to be.  Remember this is a bear.  A male bear.  Are you sure you didn't mean to post on the thread "Drinking on Gleevec"?  Just sayin'

 

You people really are trying to get me slapped with a "warning point", aren't you?  Brooke is watching.  She's everywhere.....

okay, but I really don't know what an algorithm is.

 

I need to post on the drinking thread. Male bears and thingy-ies? Billie, I need to steal your bottle aga

 

I need to post on the drinking thread. Male bears and thingy-ies? Billie, I need to steal your bottle again.

okay Pam I'll share. Are you staying warm? I wonder why they call this global warming.



#24 scuba

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Posted 25 February 2015 - 10:00 AM

Isn't there an Ursa Minor, could there be two little minors next to the big minor? Damn I gotta find out what an algorithm thingy is and what it has to do with Treys big dipper, the good news is I found the owl (wonder what happened to the mole)!

 

Billie ... Trey doesn't have a Big Dipper - he has a little dipper. And there's no algorithm thingy either.


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"


#25 rcase13

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Posted 25 February 2015 - 10:47 AM

All this talk about dose reduction. Is anyone on a reduced dose of Tasigna? I take 600mg/day. I would love to reduce that someday.

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!


#26 scuba

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Posted 25 February 2015 - 11:02 AM

All this talk about dose reduction. Is anyone on a reduced dose of Tasigna? I take 600mg/day. I would love to reduce that someday.

 

What is your PCR level? And how long have you been at that level?


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"


#27 rcase13

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Posted 25 February 2015 - 11:19 AM

Oh I have only been taking it for 5 months. I was just wondering if anyone else was on a reduced dose of Tasigna. I hear others talking about reducing Sprycel and Gleevec but I never hear of anyone reducing Tasigna.

I was 0.06 at my three month PCR. Hoping for another log at my 6 month!

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!


#28 scuba

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Posted 25 February 2015 - 11:42 AM

Oh I have only been taking it for 5 months. I was just wondering if anyone else was on a reduced dose of Tasigna. I hear others talking about reducing Sprycel and Gleevec but I never hear of anyone reducing Tasigna.

I was 0.06 at my three month PCR. Hoping for another log at my 6 month!

 

When were you diagnosed?


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"


#29 Frogiegirl

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Posted 25 February 2015 - 01:40 PM

R case you already know I'm on a reduced dose of tasigna. 450 mg a day. Hoping to go back to 300mg in march....fingers crossed.

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.


#30 rcase13

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Posted 25 February 2015 - 03:14 PM

When were you diagnosed?


I was diagnosed 10/2014

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!


#31 rcase13

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Posted 25 February 2015 - 03:15 PM

R case you already know I'm on a reduced dose of tasigna. 450 mg a day. Hoping to go back to 300mg in march....fingers crossed.



Wow half dose! That would be awesome. Hopefully I can do the same eventually.

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!


#32 scuba

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Posted 25 February 2015 - 03:23 PM

I was diagnosed 10/2014

 

You are doing terrific if you are at 0.06 PCR after 4 months. Once you go below 0.01% there is no reason why you should not try for lower dose. I would cut the dose in half and test again in six - twelve weeks. If your PCR level holds, cut in half again and test. There is no reason why 1/4 dose is not sufficient for people who achieve dramatic response in a short time.


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"


#33 rcase13

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Posted 25 February 2015 - 06:46 PM

So I guess there are no worries about mutations or resistance when cutting dose?

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!


#34 scuba

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Posted 25 February 2015 - 09:35 PM

So I guess there are no worries about mutations or resistance when cutting dose?

 

There are always worries about mutations or resistance at any dose. But given the history of this disease since Gleevec, it's remarkable how effective the TKI's are at "targeting" the genetic culprit underlying the disease. 

 

Because we have PCR - we can catch loss of response quickly. Many of us were forced to have drug interuptions for long periods - in order to discover what dose actually was best. In my own case, there was a time (seems so long ago) when I was off all therapy for 3 months. My PCR went up, and more worrisome my FISH went back to 100%. where I started. And yet my WBC's were normal, but not with normal cells. Rather than full dose, I was re-started at a lower dose and over time my body adjusted and CML never was able to advance.

 

Do I worry about mutations and resistance - only in passing. I have confidence that 4 weeks is not enough time for CML to break out into advanced stage or blast crisis based on so much research. The key is to monitor more often the result after dose change until a new normal is established.


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"


#35 Billie Murawski

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Posted 26 February 2015 - 01:45 AM

Billie ... Trey doesn't have a Big Dipper - he has a little dipper. And there's no algorithm thingy either.

Well everybody else uses that algorithm word is it or isn't it a thingy, you have to understand I have zero computer training  I'm still trying to find out what URL means. The geek squad will come out and give me lessons for $200.00 an hour.



#36 Gail's

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Posted 26 February 2015 - 03:42 PM

Find a geeky teenager. They usually like telling adults what to do, Billie! And pay in chocolate cookies.
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

#37 Billie Murawski

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Posted 26 February 2015 - 04:00 PM

I tried that Gail and everytime they see windows 7 they won't touch it. I offered them money, next time I'll try cookies.



#38 Gail's

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Posted 27 February 2015 - 04:35 PM

I tried that Gail and everytime they see windows 7 they won't touch it. I offered them money, next time I'll try cookies.


Personally I liked windows 7 better than 8. Now that I'm used to 8, doing ok with it. I think those "I hate windows 7" kids are not very experienced with it. Maybe try a computer science college student who might be less of a snob. They might require payment in booze rather than cookies.
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

#39 Pin

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Posted 02 March 2015 - 08:37 PM

Thanks Gerry - we are going to stay the course on the Gleevec. Doctor reckons it's being influenced by my dodgy tummy. I took some antibiotics, turns out - I've probably had a bug for months, not sure I've absorbed many nutrients for a while. Just been too focused on my neck injury to think about anything else. I just assumed it was stress and gleevec. Anyway, we'll see what my next test holds.

 

Thanks for replying Tedsey - I too would love to even just reduce the dose. See how I feel - but my doctor won't agree to that either. I do wonder if one day we will be down far enough to try. Maybe we are just the turtles. I didn't think I was one. But maybe we are as we always have to come up for air and can't stay under the water forever...

 

Trey - you are always good for a laugh! I remember when you sent me that the first time I went up. I hope I do pass the cigar galaxy soon...Also, I am going towards the head, right??


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


#40 Trey

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Posted 02 March 2015 - 10:37 PM

Pin,

The pointy nose, not the thingy.....Pinocchio had a pointy nose, too.  See?  It all fits. 

 

https://www.youtube.com/watch?v=GO6XPnvMV_A


Edited by Trey, 02 March 2015 - 10:38 PM.





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