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getting superstitious after cml dx


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#1 Lucas

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Posted 28 June 2015 - 08:54 AM

 It's strange how i'm getting superstitious after my cml dx. i try to do the same things after a good result, i get scary when i read expressions like "blast from the past" "that's a blast!" or "acceleration" (today i heard a band called bl'ast and the name of the album was it's in my blood...EEEKKKKKSS!!). I had an appointment on a friday 13th once and i was scared about....i know that's just my mind playing with me, but anyone has the same problem/superstition? :D



#2 Dom

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Posted 28 June 2015 - 10:17 AM

Was your dx a recent thing? That might explain it. I'm 18 months into it, and I won't say CML is not on my mind, but it doesn't rule my life anymore. And I'm not even PCRU yet.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#3 Lucas

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Posted 28 June 2015 - 12:17 PM

i have the same time from dx as you, dom. i'll have a pcr in 2 weeks, maybe that's messing with my mind 



#4 Frogiegirl

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Posted 28 June 2015 - 12:26 PM

Yep my favorite number has always been 13 or 31 both my son's and my hubs all have those numbers as there birthdays. ...then diagnosis came in 2013...the two chromosomes that mutate are 9 and 22 in cml....do the math. 9-22=13.....9+22=31....made my doctors appointment Oct 13th for Oct 18th. No coralation of diagnosis date though Oct 28th.....I'm with ya lucas....

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.


#5 gerry

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Posted 28 June 2015 - 06:54 PM

Most of us get antsy to a greater or lesser degree around test time. I find once I've had the blood drawn my mind settles down again.



#6 mlk210

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Posted 30 June 2015 - 10:03 AM

I will only park on one side of my doctor's building because the day I parked on the other side, I got news my counts were down and might need a drug break. I've circled around for five minutes waiting for someone to leave.


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#7 Gail's

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Posted 30 June 2015 - 08:23 PM

I am so glad for the calm I feel around test time when I hear of how scary it is to all of you. I'm a baby at this and have had nothing but really great results since dx in January 2015 that I seem to expect the best. Remind me of this if down the road my numbers go up! Then I'll probably develop test anxiety as well!
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

#8 chrissy778

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Posted 07 July 2015 - 08:54 PM

My appointment is coming up, I double checked to make sure its not on the date I was diagnosed. It will be two years next month.


Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of


#9 Lisa Lisa

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Posted 08 July 2015 - 07:34 AM

Gail how far have your numbers decreased ?

Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15

     22%  5/15     0.13% 6/15   PCRU attained 9/15

Initial dose Sprycel 100 mg 3/15  Lowered 80 mg 5/15   Lowered 50 mg 1/16

Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage

Sprycel: Currently 50 mg per day - taken 10 pm

 


#10 JPD

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Posted 08 July 2015 - 10:40 AM

Even though yesterday I got not-great news (increase .78% to 1.1%) I actually felt BETTER just knowing.  The time between tests is just not knowing angsty dread & its the WORST!


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#11 Gail's

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Posted 10 July 2015 - 01:42 AM

92,37,15,1.2 Lisa Lisa
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




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