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Finally i have negative PCR

Started by mabdou2005 , Jun 20 2013 02:19 PM

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#21 chriskuo

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Posted 29 October 2015 - 02:48 PM

Kali,

You should be able to get what you need. The difficulty of the appeal process may vary depending on your insurance.

#22 Kali

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Posted 29 October 2015 - 04:21 PM

Thank you! This sounds good!

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%

#23 rcase13

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Posted 29 October 2015 - 06:08 PM

A lot of it is all in the way the doctor codes it. A while back the doctor was going to switch me to Gleevec due to some thyroid issues. The insurance company denied it. But the doctor said not to worry he would simply recode it and it would be approved.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!

#24 Kali

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Posted 29 October 2015 - 07:16 PM

Thank you! I am much more encouraged and I hope others are too if they have to deal with this issue.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%

#25 Melanie

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Posted 29 October 2015 - 11:41 PM

Congratulations! Very exciting and encouraging!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#26 mabdou2005

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Posted 30 October 2015 - 07:08 AM

Good to hear from you.  Since you have been PCRU for 2 years, I do not believe you would lose your PCRU as long as you are taking some amount of TKI drug, even low dosage.  If you start the Tasigna, you should only take low dosage (no more than 300mg daily -- maybe even less), and only once per day, maybe before bed time so it will not interfere with your other drugs. 

 

You will probably have some new side effects from Tasigna, but if you take low dosage it should not be too bad. 

 

If you were able to continue using Sprycel you could reduce dosage down to maybe 20 - 40 mg per day. 

 

I would not worry about losing response.  Maybe you could even stop TKI drugs completely.  So low dosage Tasigna would very likely work well for you.

HI TREY

Always your advice to me was right .so i will start  in 50 mmg  SRYCEL for the next two and half month  till i spent all S I have 

then make a PCR test to see what happen . if ok i will take 400 mmg of  TASIGNA  ONE  dose instead of 800mmg which my ONC IS indicated to me  . pls  their was comparison between S AND T but it does not  work in your blog if you can share it again because i tired from searching about it 

 

thank,s


#27 Trey

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Posted 30 October 2015 - 03:42 PM

My old post was wiped out when the L&LS website was re-done a few years ago.  So it was lost along with many others.  I tried to transfer most information to my Blog to preserve it but could not save everything.

 

You can compare Sprycel and Tasigna dosing instructions:

http://packageinsert.../pi_sprycel.pdf

https://www.pharma.u...pdf/tasigna.pdf


#28 DebDoodah22

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Posted 30 October 2015 - 07:33 PM

Wondering if this preferred drug status has to do with recent reports of the efficacy of nilotinib for Alzeheimer's?
http://www.healthlin...diseases-101715

#29 IGotCML

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Posted 30 October 2015 - 08:23 PM

Wondering if this preferred drug status has to do with recent reports of the efficacy of nilotinib for Alzeheimer's?
http://www.healthlin...diseases-101715

My guess is no. I had the same issue with Sprycel and Tasigna when I began CML treatment almost 3 years ago. Onc wanted to put me on Sprycell but insurance company said I had to take Tasigna. Not a problem, as Tasigna has been very good to me.

 

Regarding Alzheimer's the study in the link only has a few patients. I am guessing it will take a lot more testing with a larger population before any benefits of Tasigna for Alzheimer's can be proven.


#30 Gail's

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Posted 30 October 2015 - 11:32 PM

I am so excited that there was noticeable improvement for the Alzheimer's patients even if they were few in number. To my knowledge the Alzheimer's drugs currently in use only slow disease progression, but the study patients actually improved! Of course lots more research needed, but I feel hopeful.
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

#31 DebDoodah22

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Posted 01 November 2015 - 09:49 AM

Parkinson's research is also showing positive effects from nilotinib.
http://www.npr.org/s...se-and-dementia

#32 mabdou2005

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Posted 18 December 2015 - 10:05 AM

My old post was wiped out when the L&LS website was re-done a few years ago. So it was lost along with many others. I tried to transfer most information to my Blog to preserve it but could not save everything.

You can compare Sprycel and Tasigna dosing instructions:
http://packageinsert.../pi_sprycel.pdf
https://www.pharma.u...pdf/tasigna.pdf


#33 mabdou2005

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Posted 18 December 2015 - 10:28 AM

Thank's Trey your advice is working good to me . I had recived my PCR today after about 2 month in half dose spryel . It's still negative as full dose . I hope it be the same in half dose of tasigna .i will start with tasigna after 2 week . the quailty of my life improve very mush in half dose of S . Is 2 month is longe time to do my next PCR with tasigna or it is suitable ?

M abdo

#34 Trey

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Posted 18 December 2015 - 10:36 PM

2 months is fine.  Good to hear you are doing well.


#35 mabdou2005

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Posted 05 July 2016 - 05:27 AM

2 months is fine.  Good to hear you are doing well.

 

Hi Tery

hoping you are doing well  i start TASIGNA at 1 JAN 2016 i prefer to start with full dose and after 3 month i make my first PCR in full dose it was also NEGATIVE as befor but due to terrible side effect like Rash ,itchy scalp,joint pain,cramp i deiced to try half dose i start in 1 MAY till 1 JUL IN HALF DOSE my second PCR TODAY come BACK at  0.0016% IS 

did you think that half dose  is not suitable for me and i have to deal with the side effect and you think if i go back to full dose i can get my negative PCR soon after 3 month from now again

 

N.B it is first time to see in the report   IS  

 

thanks for reply


#36 Trey

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Posted 07 July 2016 - 04:04 PM

The PCR result is very low, but not PCRU so this loss of PCRU always concerns patients.  And that was after only 1 month on half dosage.  So I do not know if the half dosage will work for you, but I would continue on half dosage for another PCR cycle to see what happens. 


#37 mabdou2005

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Posted 07 July 2016 - 04:07 PM

The PCR result is very low, but not PCRU so this loss of PCRU always concerns patients. And that was after only 1 month on half dosage. So I do not know if the half dosage will work for you, but I would continue on half dosage for another PCR cycle to see what happens.


#38 mabdou2005

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Posted 07 July 2016 - 04:12 PM

Dear Trey

It was 2 month in half dose my concrmes now is PCRU will need a long time to git it again and fow many log reduction from my result now to be PCRU

#39 Trey

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Posted 08 July 2016 - 02:59 PM

Mabdou,

Your PCR is already at -5 logs which would be reported as PCRU by most labs.  But yours apparently reports down to the -5 log.  You are probably extremely close to PCRU, maybe 1/10 log.  So you are doing very well and there is no reason for any concern.  But I realize we want to see "negative", not an extremely low number. 


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