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Trey, OUR CML GEEK


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#21 kat73

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Posted 31 January 2018 - 10:42 AM

I will add my heartfelt thanks to Trey, also.  It wasn't just my particular questions, it was his answers to everybody's questions that singlehandedly brought me out of my newbie Dark Days.  I sometimes have wished that I had the brain or personality or faith that would allow me to not question, but I just don't.  And Trey's blog - a virtual encyclopedia for CML - was my first research library.  When I think there are CML patients out there depending on only the official pamphlets, as improved as they have become, I feel sad.  But then, as I said, some people are happier not knowing too much and trusting that their doctor will tell them what they need to know.  I have to keep telling myself that this is a valid, legitimate choice.  Not mine, though.  THANK YOU, TREY . . . for your Trey-ness!


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 carrie

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Posted 31 January 2018 - 11:45 AM

I too want to give a shout out to Trey and everyone for all of the help given on this forum. I especially needed Trey's blood work information and other links to articles when I was first diagnosed. I do better trying to learn about my leukemia rather than waiting for a doctor to explain things--which they just don't have the time to do. We have 1 oncologist for this rural area who comes up here for 3 days and sees every cancer patient. He really doesn't have the time to explain a multitude of information, so Trey became my online Oncologist.

 

Now I am wondering if we will not be able to talk like this and I am feeling frustrated. At 60 years old, I don't like change either. For me, this was working fine. Why do people have to fix things that are NOT broken.

 

I will try to stay open minded for the new site. I registered so now we will see.

 

Boo Hoo----Goodbye old site.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#23 LouiseS

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Posted 31 January 2018 - 02:23 PM

Thank you Trey. When I posted about my husband's wbc rising rapidly even though he had been on Sprycel for a few days, you told me not to panic, that it would take time, and they would go down ( which they did). His oncologist by contrast had got a second opinion, was a bit unnerved by the result and had therefore helped create our panic.

Telling my husband what you had said lifted our spirits so much that night. Will always appreciate it.

Best of luck to everyone
Louise




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