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Started by Floa7 , Jun 01 2016 10:21 AM

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23 replies to this topic

#21 thatguy

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318 posts

LocationWild west

Posted 15 June 2016 - 07:57 PM

I'm with thatguy... LOL I will stick to what they give me.

Hey, I've been wrong before, in life! 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)

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#22 Floa7

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Locationindiana

Posted 22 September 2016 - 10:45 AM

After 3 months off of Sprycel, on his check-up it has gone back up to 7.345% So he went back onto his 70 mg of Sprycel yesterday.

His skin was white back June first, after being off of Sprycel for three months his color is back. His blood work has always been in the normal range. Shall wait till the next 3 month appt. and see how he is doing.

1 2012 CML detected Started Gleevec 400 mg

In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto

2 2015 Tasigna 600 mg/day

I have been PCRU for 2 years and stopped Tasigna 4 7 2017

5 8 2017 results 0.008

5 30 2017 results 0.028

6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1

My son

11 2011 CML detected Started Gleevec 400 mg

He went 2 1/2 years on gleevec and lost PCRU

Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0

He went back onto Sprycel and now is PCRU again

3 16 2017 results 0.008

6 1 2017 results 0.002

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#23 Frogiegirl

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259 posts

Posted 22 September 2016 - 02:53 PM

This is exactly what scares me, going off to have a baby. I'm sorry floa7 that's a quick rise. Any chance you can post yours and you're son's responses in the signature area? Hugs****

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.

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#24 gerry

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1,035 posts

Posted 22 September 2016 - 05:07 PM

After 3 months off of Sprycel, on his check-up it has gone back up to 7.345% So he went back onto his 70 mg of Sprycel yesterday.

His skin was white back June first, after being off of Sprycel for three months his color is back. His blood work has always been in the normal range. Shall wait till the next 3 month appt. and see how he is doing.

If it was me, I would look to knock the CML back to negative then reduce dosage to a level that maintains PCRU, yet has the least possible side effects. Can't believe the doc doesn't like dose reduction yet was happy to go against guidelines in cessation and only test at three months. Increase should have been picked up earlier. Hope he had a speedy return to negative. :-)