The end of May of this year my son's PCR finally reached .02, 1 yr. and 10 months after diagnosis. His last check up the end of August his PCR was back up to .18. He's on 600mg of Tasigna and the Dr. told him to keep taking it and not miss any doses. He had missed some doses in that 3 mo. period. He also had started using snuff(smokeless tobacco) in that time period and possibly some alcohol. Does nicotine and/or alcohol cause any interference with the medication not working like it should? Just wondering....
His next test isn't until the end of November.
Nicotine and alcohol
Started by
janlyn28
, Oct 08 2017 06:37 PM
5 replies to this topic
#1
janlyn28
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Posted 08 October 2017 - 06:37 PM
Dx July 1, 2015 PCR 100. Chromosomes 19/20. Started on 100mg Sprycel. End of Sept. numbers same as at diagnosis..switched to 140mg Sprycel. Numbers dramatically improved..
Nov. 1...31.8
Dec. 1...3.4....Biopsy..Chromosomes..2/20
March, 2016...1.8
May 3 - .89 Also started with side effect of low platelets. Was taken off meds for a week at a time in May, June and July to allow platelets to recover.
July 7..PCR..1.67
July 20...FISH- negative
July 28..switched back to 100mg Sprycel because of continued low platelets
August 30...PCR..2.0, Platelets..44
Sept. 12..Platelets..110
Sept. 23..PCR..1.21
Oct.25..PCR..1.7, Platelets..41, Still on 100mg Sprycel
Nov.6, 2016..changed to 600mg Nalotinib
Dec.20..PCR- .87, Platelets..117
Jan. 31,2017..PCR- .809
May...PCR- .04
Aug. 21...PCR- .18
#2
thatguy
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Posted 08 October 2017 - 09:29 PM
Don't know, and I also don't know of any efficacy of Tasigna against oral cancer. Put some sense in that guy!
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)
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)
#3
kat73
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Posted 09 October 2017 - 11:43 AM
It's very hard for Moms to make much headway on this! I kept after my son, a baseball player, with the entire usual Mom arsenal, to no avail. What finally worked was an ultimatum from his girlfriend. Everyone who knew her knew she would follow through. It worked! (Now married with two girls. He "gets it" now.) So, janlyn, you need to get ahold of a great girl . . .
Seriously, though, don't worry too much over this new number. It's not that far off from the other one. And it's just ONE test - wait and see if there's a true trend - I'll bet not. All of us on here have had such variances, and even wider ones, that ultimately didn't mean a thing. He must be disappointed and distressed, though, and maybe even depressed. Hence, turning to the comforts of alcohol and nicotine. It's also very hard to comply with the strictures of taking Tasigna - a lot of self-discipline required - something even more mature people have trouble with. I, for one, would not like having to constantly calculate every day when I was going to eat and when I took my pill - constantly thinking about CML is what that means. Our life looks easy in some respects, but a lot of it is pretty hard stuff. You can probably help him best by bucking him up about this test - if he stays the course I'll bet the farm that his PCR's will fall. This isn't Mom talk, this is science and math, so he should believe you.
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.
#4
janlyn28
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Posted 10 October 2017 - 09:16 AM
Don't know, and I also don't know of any efficacy of Tasigna against oral cancer. Put some sense in that guy!
I would love to put sense into him, but ya know, sometimes "mom advice" just isn't always heeded!!
Dx July 1, 2015 PCR 100. Chromosomes 19/20. Started on 100mg Sprycel. End of Sept. numbers same as at diagnosis..switched to 140mg Sprycel. Numbers dramatically improved..
Nov. 1...31.8
Dec. 1...3.4....Biopsy..Chromosomes..2/20
March, 2016...1.8
May 3 - .89 Also started with side effect of low platelets. Was taken off meds for a week at a time in May, June and July to allow platelets to recover.
July 7..PCR..1.67
July 20...FISH- negative
July 28..switched back to 100mg Sprycel because of continued low platelets
August 30...PCR..2.0, Platelets..44
Sept. 12..Platelets..110
Sept. 23..PCR..1.21
Oct.25..PCR..1.7, Platelets..41, Still on 100mg Sprycel
Nov.6, 2016..changed to 600mg Nalotinib
Dec.20..PCR- .87, Platelets..117
Jan. 31,2017..PCR- .809
May...PCR- .04
Aug. 21...PCR- .18
#5
janlyn28
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Posted 10 October 2017 - 09:24 AM
It's very hard for Moms to make much headway on this! I kept after my son, a baseball player, with the entire usual Mom arsenal, to no avail. What finally worked was an ultimatum from his girlfriend. Everyone who knew her knew she would follow through. It worked! (Now married with two girls. He "gets it" now.) So, janlyn, you need to get ahold of a great girl . . .
Seriously, though, don't worry too much over this new number. It's not that far off from the other one. And it's just ONE test - wait and see if there's a true trend - I'll bet not. All of us on here have had such variances, and even wider ones, that ultimately didn't mean a thing. He must be disappointed and distressed, though, and maybe even depressed. Hence, turning to the comforts of alcohol and nicotine. It's also very hard to comply with the strictures of taking Tasigna - a lot of self-discipline required - something even more mature people have trouble with. I, for one, would not like having to constantly calculate every day when I was going to eat and when I took my pill - constantly thinking about CML is what that means. Our life looks easy in some respects, but a lot of it is pretty hard stuff. You can probably help him best by bucking him up about this test - if he stays the course I'll bet the farm that his PCR's will fall. This isn't Mom talk, this is science and math, so he should believe you.
Well we thought he had a great girl, but after 3-1/2 yrs. she broke up with him!! So he's had some pretty tough stuff to deal with the last 2 yrs. of his life! Which might be partly why the "bad habits" have come into play. It has all started since the break up.
Hopefully the test result was just from the missed doses. But because he took longer to respond to treatment..he started out on Sprycel and had to switch to Tasigna...his dr. wont mess around too much before he sends him back to the transplant dr. for another opinion from her. And we really want to stay away from that transplant if at all possible! He does have the routine down pretty good for taking the Tasigna, so that's not a huge thing anymore.
Dx July 1, 2015 PCR 100. Chromosomes 19/20. Started on 100mg Sprycel. End of Sept. numbers same as at diagnosis..switched to 140mg Sprycel. Numbers dramatically improved..
Nov. 1...31.8
Dec. 1...3.4....Biopsy..Chromosomes..2/20
March, 2016...1.8
May 3 - .89 Also started with side effect of low platelets. Was taken off meds for a week at a time in May, June and July to allow platelets to recover.
July 7..PCR..1.67
July 20...FISH- negative
July 28..switched back to 100mg Sprycel because of continued low platelets
August 30...PCR..2.0, Platelets..44
Sept. 12..Platelets..110
Sept. 23..PCR..1.21
Oct.25..PCR..1.7, Platelets..41, Still on 100mg Sprycel
Nov.6, 2016..changed to 600mg Nalotinib
Dec.20..PCR- .87, Platelets..117
Jan. 31,2017..PCR- .809
May...PCR- .04
Aug. 21...PCR- .18
#6
missjoy
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