Congrats, frogie!!! I'll have a pcr soon and get anxious too!! hope i'll get a great result too! go party, girl!
knock. .knock. ...Who's there? ??????
Started by
Frogiegirl
, Jun 24 2015 10:38 AM
36 replies to this topic
#22
kat73
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Posted 29 June 2015 - 05:59 PM
Frogiegirl - I've been on vacation and am catching up - this is just the best news! Didn't I tell you I had a good feeling about your next PCR? Bet the blues are all gone, right? (For now, yeah, I know - right - go away with that) This is just so great.
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.
#23
Frogiegirl
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Posted 29 June 2015 - 06:41 PM
Thanks kat73! I'm definitely still taking it in. When my nurse called with results I told her that no one was home with me and to keep them to herself. She said why? ITS good news! You Did say you thought it would be good;)
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.
#24
CallMeLucky
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Posted 29 June 2015 - 08:38 PM
Sweeeeet!
Date - Lab - Scale - Drug - Dosage MG - PCR
2010/Jul - MSKCC - Non-IS - Gleevec - 400 - 1.2%
2010/Oct - MSKCC - Non-IS - Gleevec - 400 - 0.25%
2010/Dec - MSKCC - Non-IS - Gleevec - 400 - 0.367%
2011/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.0081%
2011/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%
2011/Sep - MSKCC - Non-IS - Gleevec - 400 - 0.00084%
2011/Dec - MSKCC - Non-IS - Gleevec - 400 - 0%
2012/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.004%
2012/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%
2012/Sep - MSKCC - Non-IS - Gleevec - 400 - 0%
2012/Dec - MSKCC - Non-IS - Sprycel - 100 - 0%
2013/Jan - Quest - IS - Sprycel - 50-60-70 - 0%
2013/Mar - Quest - IS - Sprycel - 60-70 - 0%
2013/Apr - CUMC - Non-IS - Sprycel - 50 - 0.036%
2013/May - CUMC - Non-IS - Sprycel - 50 - 0.046%
2013/Jun - Genoptix - IS - Sprycel - 50 - 0.0239%
2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0192%
2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0034%
2013/Oct - Genoptix - IS - Sprycel - 70 - 0.0054%
2014/Jan - Genoptix - IS - Sprycel - 70 - 0.0093%
2014/Mar - Genoptix - IS - Sprycel - 100 - 0.013%
2014/Apr - Genoptix - IS - Sprycel - 100 - 0.0048%
2014/Jul - Genoptix - IS - Sprycel - 100 - 0%
2014/Nov - Genoptix - IS - Sprycel - 100 - 0.047%
2014/Dec - Genoptix - IS - Sprycel - 100 - 0%
2015/Mar - Genoptix - IS - Sprycel - 100 - 0%
2015/Jun - Genoptix - IS - Sprycel - 100 - 0%
2015/Sep - Genoptix - IS - Sprycel - 100 - 0%
2015/Dec - Genoptix - IS - Sprycel - 100 - 0%
2016/Mar - Genoptix - IS - Sprycel - 100 - 0.0228%
2016/Jun - Genoptix - IS - Sprycel - 100 - 0%
2016/Sep - Genoptix - IS - Sprycel - 100 - 0%
2016/Dec - Genoptix - IS - Sprycel - 100 - 0%
2017/Mar - Genoptix - IS - Sprycel - 100 - 0%
2017/Jun - Genoptix - IS - Sprycel - 100 - 0%
2017/Sep - Genoptix - IS - Sprycel - 100 - 0%
2017/Dec - Genoptix - IS - Sprycel - 100 - 0%
#25
Frogiegirl
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Posted 25 September 2015 - 11:11 AM
Second verse same as the first! Recently received BCR-ABL results.....looks like I'm holding onto my PCRU on the higher dose of tasigna. (600mg daily) my doctor said we need a few more of these before we will discuss reduction again or possible cessation for perhaps our last baby! trying not to get to excited....hate getting my hopes up 
thought I would update 
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.
#26
Frogiegirl
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Posted 25 September 2015 - 12:02 PM
Mr. Tee yep I've always taken tasigna....was only on the high dose for about 3 months at diagnosis then 450 then 300 and now 600 since march2015. side affects are tough but trying to push through 
Trying to keep my eye on the prize and perhaps one day go off completely.
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.
#27
tiredblood
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Posted 25 September 2015 - 12:06 PM
Best knock, knock joke (actually a reality) I've ever heard.
was referring to the original post and later noted it was some time ago
Congrats, frogie girl. Like Bzmm1 posted below, looking forward to little frogies
Edited by tiredblood, 25 September 2015 - 03:53 PM.
#28
soundoff
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Posted 25 September 2015 - 12:20 PM
congratulations!!!!!!!!
#29
scuba
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Posted 25 September 2015 - 12:47 PM
Second verse same as the first! Recently received BCR-ABL results.....looks like I'm holding onto my PCRU on the higher dose of tasigna. (600mg daily) my doctor said we need a few more of these before we will discuss reduction again or possible cessation for perhaps our last baby! trying not to get to excited....hate getting my hopes up
Get your hopes up! Congratulations Frogie!
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#30
Buzzm1
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Posted 25 September 2015 - 01:12 PM
Congratulations on your continued PCRU Frogiegirl; wishing you reduction/cessation and we'll be looking forward to the time when we hear the news of the next little Frogie!
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#31
Trey
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Posted 25 September 2015 - 02:13 PM
Will you name him/her, maybe Tad?
Edited by Trey, 25 September 2015 - 06:39 PM.
#32
SUE
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Posted 25 September 2015 - 03:49 PM
Great news, Frogiegirl!
Sue
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
#33
Billie Murawski
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Posted 26 September 2015 - 01:21 AM
Congratulations Froggie Girl, I'm so happy for you, Now you're getting me all excited these med sure are making a lot of wonderful things happen, sometimes they may be a pain in the arse but they do work. Keep us informed!!!! Billie
#34
Frogiegirl
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Posted 26 September 2015 - 04:41 PM
Thanks everyone! I'm happy but cautious. I think I shall name Him/Her Treycina????? hmmmmmm 
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.
#35
kat73
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Posted 29 September 2015 - 02:13 PM
Or maybe Treyvor? Congratulations from me too - I was on vacation again and missed your good news.
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.
#37
Lucas
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Posted 30 September 2015 - 04:55 AM
Maybe treylor,treybert or treyshley.
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