Charlie Brown and Snoopy are celebrating in your honor.
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Started by
TeddyB
, Oct 09 2014 09:19 AM
106 replies to this topic
#21
pammartin
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Posted 16 April 2015 - 11:08 PM
#22
Gail's
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Posted 17 April 2015 - 02:07 PM
I'm bummed. Reported on my energy massage and how much it helped. Well, that night started with major diarrhea and keep having nausea and diarrhea every day for a few hours. Felt so bad this morning, I stayed home from work. I have an appt for another massage next week so will ask about that when I go there. Hard to know the source of stomach issues. Only change for me is TKI but more than tired of the unpredictable nature of my gut.
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
#23
TeddyB
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Posted 18 April 2015 - 04:29 AM
Thank you pam, best results ive had in almost 2 years, so happy indeed 
Charlie Brown and Snoopy are celebrating in your honor.
Thanks
I'm bummed. Reported on my energy massage and how much it helped. Well, that night started with major diarrhea and keep having nausea and diarrhea every day for a few hours. Felt so bad this morning, I stayed home from work. I have an appt for another massage next week so will ask about that when I go there. Hard to know the source of stomach issues. Only change for me is TKI but more than tired of the unpredictable nature of my gut.
Hope it passes soon.
#24
Gail's
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Posted 18 April 2015 - 11:37 AM
Thanks TeddyB. Guess there will be good and bad days but those good ones are sure the best!
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
#25
gerry
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Posted 18 April 2015 - 08:26 PM
Hi Gail,
Get an anti nausea script from your doc, I used to use Maxalon. Try taking a probiotic plus add some fibre into your diet something like metamusil or psylium husks. The fibre will help bulk up the stools. I always had gastro stop in my handbag as well. Keep a record of what you're eating, coffee wasn't always a friend of mine.
#26
Billie Murawski
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Posted 18 April 2015 - 09:28 PM
Hi Gail, It sounds like you're not ready for a massage yet. Any tki affects your entire body, a massage sounds great but think about all your insides that are getting all smushed around. I would try to use a hot tub oh that sounds so goooooood!!!!! Go easy on yourself it hasn't been that long since your dx. You will get your old life back plus a new normal as we call it. We just have to slow down a bit
Billie
#27
Gail's
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Posted 19 April 2015 - 02:50 AM
No time to slow down Billie! I'm getting old and want to plow on thru my remaining years. I'm not ready for depends yet, so I'll try everyone's tips.
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
#28
Lucas
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Posted 19 April 2015 - 06:46 AM
Great result, teddy! I received my 6 Monty PCR - after fáil gleevec- it came belos the detection limit - they could find bcr- abl in my blood, but was too low to give a result:D
#29
chrissy778
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Posted 19 April 2015 - 07:03 AM
Love hearing everyone's great blood work results, so happy for you. Gail I have heard when you have a massage it releases toxins in your system, I wonder if that is what is happening to you.. I took a bath with Epsom salts and something similar happened to me.... Never again will I use them I am afraid it will happen again, made me so very sick.
Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of
#30
TeddyB
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Posted 19 April 2015 - 02:02 PM
Thank you Lucas and Chrissy
#31
Gail's
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Posted 19 April 2015 - 08:20 PM
Good thought Chrissy. I've heard that too. I just think I'm blessed ? With a sensitive tummy and if anything new happens it rebels.
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
#32
TeddyB
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Posted 08 July 2015 - 01:10 PM
Another test result, seems i am designated to stay at around this plateau.
No cigar, but a glass or two of red is in order to celebrate
International Scale:
BCR-ABL1/ABL1 BCR-ABL/GUS
04.11.12 76% 21%
06.14.12 17% 10%
07.26.12 3% 3%
10.24.12 0.10% 0.08%
01.15.13 0.014% 0.01%
04.11.13 0.014% 0.01%
07.16.13 0.032% 0.03%
09.12.13 0.021% 0,02%
12.04.13 0.013% 0,01%
03.05.14 0.017% 0.02%
06.11.14 0.025% 0.02%
09.12.14 0.018% 0.02%
12.11.14 0.031% 0.03%
03.23.15 0,014% X.XX%
15.06.15 0,013% X.XX%
Hope everyone is feeling good, cheers!
#33
acl
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Posted 08 July 2015 - 01:27 PM
Another test result, seems i am designated to stay at around this plateau.
No cigar, but a glass or two of red is in order to celebrate
International Scale:
BCR-ABL1/ABL1 BCR-ABL/GUS
04.11.12 76% 21%
06.14.12 17% 10%
07.26.12 3% 3%
10.24.12 0.10% 0.08%
01.15.13 0.014% 0.01%
04.11.13 0.014% 0.01%
07.16.13 0.032% 0.03%
09.12.13 0.021% 0,02%
12.04.13 0.013% 0,01%
03.05.14 0.017% 0.02%
06.11.14 0.025% 0.02%
09.12.14 0.018% 0.02%
12.11.14 0.031% 0.03%
03.23.15 0,014% X.XX%
15.06.15 0,013% X.XX%
Hope everyone is feeling good, cheers!
Congratulations!
Diagnosed March 2014
Imatinib 400 mg. Summer 2014, Imatinib 300 mg.
% BCR-ABL
IS-NCN
06/01/16 0.18%
24/02/16 0.11%
23/03/16 0.13%
12/05/16 0.07%
13/07/16 0.17%
12/09/16 0.12%
21/19/16 0.15%
23/11/16 0.09%
20/12/16 0.11%
19/01/17 0.07%
21/02/17 0.07%
20/03/17 0.06%
20/04/17 0.06%
20/05/17 0.07%
20/06/17 0.06%
23/08/17 0.08%
22/12/17 0.04%
#34
chrissy778
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Posted 08 July 2015 - 04:42 PM
So Happy For you. God Bless
Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of
#36
TeddyB
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Posted 17 October 2015 - 05:50 AM
Got the latest results today:
International Scale:
BCR-ABL1/ABL1 BCR-ABL/GUS
04.11.12 76% 21%
06.14.12 17% 10%
07.26.12 3% 3%
10.24.12 0.10% 0.08%
01.15.13 0.014% 0.01%
04.11.13 0.014% 0.01%
07.16.13 0.032% 0.03%
09.12.13 0.021% 0,02%
12.04.13 0.013% 0,01%
03.05.14 0.017% 0.02%
06.11.14 0.025% 0.02%
09.12.14 0.018% 0.02%
12.11.14 0.031% 0.03%
03.23.15 0,014% X.XX%
15.06.15 0,013% X.XX%
16.09.15 0,01% X,XX%
Cheers
#37
blueheron
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Posted 17 October 2015 - 11:46 AM
Congrats on the excellent response! Just got my latest PCR results, looks like I'm steady. 100 mg Sprycel.
10/10/2015 0.091
and previous was
6/10/2015 0.089
Statistically equivalent. I am not unhappy with this result even though it is up .002 percent! I am about 28 months since DX.
DX 6/2013
Sprycel 100mg
CCR 3/2015
MMR 2/2016
<.01 IS 10/16 hopkins didn't report actual percentage
.007 IS 6/2017
<.01 12/2017 again no actual percentage but didn't see the report myself yet
#38
Gail's
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Posted 17 October 2015 - 03:39 PM
Good news for both of you Teddy and Blue Heron. My test in June (5 mos after starting gleevec) was 1.281% and in September 0.852%. Going the right direction. Down overall from 32% in early February this year.
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
#39
TeddyB
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Posted 19 January 2016 - 05:13 AM
Got my latest results, and bad case of the stomach bug, i think today might actually be the first time in almost 4 years that i dont take my Gleevec, i cant seem to eat anything, not even a ritz cracker.
International Scale:
BCR-ABL1/ABL1 BCR-ABL/GUS
04.11.12 76% 21%
06.14.12 17% 10%
07.26.12 3% 3%
10.24.12 0.10% 0.08%
01.15.13 0.014% 0.01%
04.11.13 0.014% 0.01%
07.16.13 0.032% 0.03%
09.12.13 0.021% 0,02%
12.04.13 0.013% 0,01%
03.05.14 0.017% 0.02%
06.11.14 0.025% 0.02%
09.12.14 0.018% 0.02%
12.11.14 0.031% 0.03%
03.23.15 0,014% X.XX%
15.06.15 0,013% X.XX%
16.09.15 0,01% X,XX%
16.12.15 0.01% X.XX%
#40
r06ue1
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Posted 19 January 2016 - 06:57 AM
Has your Oncologist mentioned trying to go off the drug? 50/50 chance you may never need to take it again.
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
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