Fluctuations in BCR-ABL levels occurs frequently, and this often alarms patients, Neil Pravin Shah, MD, comments.
http://www.onclive.c...to-Be-Concerned
Addressing Fluctuating BCR-ABL Levels in CML
Started by
gerry
, May 31 2015 10:33 PM
7 replies to this topic
#2
pammartin
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Posted 01 June 2015 - 08:13 AM
Thanks for the read Gerry. It is frightening for the new patient or long term established one to see numbers fluctuating, especially when it was undetectable in the past. Every comment for support as it being only testing noise or a fluke is hard to accept when a person sees these fluctuations.
Hope this helps some understand or at least try not to get discouraged or highly frightened if this happens to them.
#3
JPD
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Posted 01 June 2015 - 03:38 PM
Pam,
Oh, dont worry - Im only MODERATLY frightened of my jump from .5 to .78 (or whatever the hell it was). Another test in a couple weeks.
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%
#4
Frogiegirl
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Posted 01 June 2015 - 03:45 PM
I'm with you JPD.....the fluctuations are wretched. Scared shitless is an understatement. ....uuhhggg
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
pammartin
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Posted 01 June 2015 - 10:18 PM
So sorry JPD, I have not experienced this oddity yet, but fully believe some day I will. The fear never really left, just the Ph fear is greater.
#6
Gail's
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Posted 03 June 2015 - 12:24 AM
Fear around testing came up in my cancer support group today. I was surprised that so many people who have been cancer free still have anxiety for a bit before testing. One guy who has beat Ewing's sarcoma twice in his life said even though he's been cancer free for 8 years, he's stressed that he has to get a ct next month to make sure he's still tumor free. Universal anxiety, I guess, regardless of the type of cancer one has.
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
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
#7
gerry
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Posted 03 June 2015 - 11:43 PM
A lot of the members on the Treatment Free FB site get worried around testing time, it is especially worrying for those that have had the CML make a slight reappearance.
#8
pammartin
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Posted 05 June 2015 - 04:21 PM
Great post Gerry. And it sums up what we read on a regular basis.
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