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Fellow CML patient given one year to live.


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#21 kat73

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Posted 09 December 2017 - 11:30 AM

"Something else."

 

The years of experience have been accrued in an era of full strength doses; only fairly recently has there been a wave of dose reducers.  What happens when you barely wave the TKI over the martini glass over the course of 10-20 years?  Maybe it stops working?  Maybe CML advances?  Even Dr. Druker himself told me he "worries a little bit" over very low doses creating resistance ultimately.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#22 rcase13

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Posted 10 December 2017 - 12:27 AM

The odds of a mutation or resistance are low after 2 years or more at low PCR numbers. I get that. But CML is extremely rare and I got it. So you will have to excuse me for looking over my shoulder. I don't exactly have a good track record.

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!


#23 Busa

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Posted 10 December 2017 - 11:37 AM

I normally don't partake of these types of discussions, however please allow me to chime in.

I love my CML.

Here's why, I was born or grew up a pessimist.  Everything in life was bad or going to turn out badly, etc.

Now I am choosing to be an optimist.  I was first told I had two to four months to live back in 2009 (wrong diagnosis).

It used to be every day was dreaded, now every morning which I wake up is a gift from God.

I LIVE every day, I LOVE every day, I ENJOY every day. 

I choose to thank my CML for causing me to LIVE LIFE & ENJOY LIFE!

I'm a better man, father & husband because of CML.

It's MY CHOICE!

 

I hope you all have a wonderful Christmas and great New Year (or whatever Holiday you observe)



#24 thatguy

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Posted 10 December 2017 - 08:19 PM

I normally don't partake of these types of discussions, however please allow me to chime in.
I love my CML.
Here's why, I was born or grew up a pessimist. Everything in life was bad or going to turn out badly, etc.
Now I am choosing to be an optimist. I was first told I had two to four months to live back in 2009 (wrong diagnosis).
It used to be every day was dreaded, now every morning which I wake up is a gift from God.
I LIVE every day, I LOVE every day, I ENJOY every day.
I choose to thank my CML for causing me to LIVE LIFE & ENJOY LIFE!
I'm a better man, father & husband because of CML.
It's MY CHOICE!

I hope you all have a wonderful Christmas and great New Year (or whatever Holiday you observe)


Awesome! And from a fellow 'Busa owner.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#25 Busa

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Posted 10 December 2017 - 10:40 PM

Awesome! And from a fellow 'Busa owner.

Or it could stand for:

 

B-ald

U-gly

S-hort

A-$$hole

 

But I did have one when I got this nickname :)



#26 thatguy

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Posted 11 December 2017 - 12:52 AM

Well I'm disappointed. Lol
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#27 Damerault

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Posted 11 December 2017 - 12:49 PM

This might be a dumb question, but the link states he has Chronic Mylogenous Leukemia. Is there a difference between Mylogenous and Myeloid? I have seen it both ways. Is it interchangeable? Thanks.


11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000



Be well, Diane.


#28 scuba

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Posted 11 December 2017 - 01:18 PM

This might be a dumb question, but the link states he has Chronic Mylogenous Leukemia. Is there a difference between Mylogenous and Myeloid? I have seen it both ways. Is it interchangeable? Thanks.

 

interchangeable.


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 Sandrea

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Posted 11 December 2017 - 05:34 PM

https://www.patreon....day-we-15738260


Diagnosed 1 April 2015. WBC 86000; b2a2 (p210) transcript 
on Hydrea for 2 months, then generic Gleevec 400mg (06/06/15)
CCyR in April 2016
 
12/22/2016  PCR:  0.49% (IS)           18 Month
03/29/2017  PCR:  0.68% (not IS)     21 Month
06/06/2017  PCR:  1.62% (not IS)     24 Month
06/20/2017  increased dose of imatinib to 600mg
10/30/2017  PCR:  0.15% (not IS)     28 Month
 

#30 thatguy

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Posted 11 December 2017 - 07:28 PM

I heard "banatinib" which I'm hoping was "imatinib" but maybe ponatinib?
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#31 Red Cross Kirk

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Posted 11 December 2017 - 08:57 PM

This might be a dumb question, but the link states he has Chronic Mylogenous Leukemia. Is there a difference between Mylogenous and Myeloid? I have seen it both ways. Is it interchangeable? Thanks.

In olden times I think it was also referred to as Chronic Granulocytic Leukemia.


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%





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