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Sprycel - Slow Start? Pcr UP!

100mg. Sprcel? Pcr UP!

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#1 jlegakis

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Posted 20 May 2016 - 03:06 PM

My doc switched me 3 mos. ago to Sprycel 100mg after Gleevec 600mg only brought my Pcr down to 4%. I did reach a 0% FISH and a CCyR, but the Pcr started to drift to 11% and eventually 21% so the switch was made in Feb. to Sprycel (A mutation test had been made about 9 mos. earlier not showing anything.) Well, I was shocked to see my recent Pcr result at 54% and asked for a retest! Could that be a lab anomaly since I was hoping for a big DROP to perhaps 1% or even lower. Does Spyrcel take time to build up in your body since it is a new TKI? I am waiting for the retest result, but what do you think could be the case? Perhaps, I should take another mutation test? If the result is higher still what do you suggest? I am really worried even though my WBC is at 5.1, HGB at 14.2 and Platelets at 95??? I feel full of energy and run 3-5 miles everyday so I'm baffled! HELP!



#2 thatguy

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Posted 20 May 2016 - 07:05 PM

Although no expert by any means, I would insist on a mutation test, a medicine change, and monthly pcr, pending if the retest comes back similar. Not to freak you out, but have you been put on the transplant registry to find if any matches are available (just better to be prepared i.m.o)? Do you take any supplements that could impair absorption? I'm not familiar with Sprycel really, but just hoping to help in some way.
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)

#3 jlegakis

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Posted 28 May 2016 - 03:47 PM

I posted a long question on "Sprycel - 5 Years" and was wondering IF someone like TREY could HELP me with some timely advice? I really need it! Thanx...



#4 thatguy

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Posted 29 May 2016 - 02:20 AM

I'm sorry for what you're going through....based on my understanding of the medical literature online about the disease, and judging that in the time period you've been on Sprycel, and the verified increasing pcr by double the amount at your Sprycel initiation baseline, yes, you need another mutation test, to especially rule out t315. Tasigna or Iclusig would be my prescription in the meantime (with my Internet guy MD license)...why is your doctor not promptly concerned with this? I've never read anything where pcr has increased steadily that much over several months without a change in treatment and a mutation analysis...and yes a mutation won't exist until it exists... and it is believed that they can even exist and not be detected immediately. So 9 months ago you were at ccyr, now you're significantly elevated, and no longer at that point, which would warrant the new mutation test. You're at a level where people are at diagnosis without treatment, and others have had mmr within the time period you've been on Sprycel. I fear that Sprycel isn't helping at all.
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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