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Finally i have negative PCR


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#1 mabdou2005

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Posted 20 June 2013 - 02:19 PM

Today my result for 9 month come back negative 0 % . It's one of my best day's all over my life . Thank's GOD and thank's to inventor of sprycel and all scientists how spent their life in finding away to fights CML .today i remmmember my first PCR in 2004 it was also negative which make the ONC diagnous me as ET Patient  which  make me very happy in that day .but today i have CML with negative PCR

THANK'S to all colleagues here how advised and support me in the last 3 years especially BIG BOSS TERY

GOD CURE ALL OF US

M ABDO



#2 Trey

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Posted 20 June 2013 - 04:32 PM

Very happy for you.  We are seeing more people who struggled along the way who are doing very well.  That is encouraging to all.



#3 GerryL

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Posted 20 June 2013 - 06:34 PM

Congratulations on your results. 



#4 mariebow

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Posted 20 June 2013 - 06:53 PM

Congrats



#5 Susan61

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Posted 20 June 2013 - 08:16 PM

Congratulations!!!!  We are hearing more and more PCRU results everyday.  May it continue.



#6 Tedsey

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Posted 23 June 2013 - 03:55 PM

I am so happy to hear this!  Hip, hip, hurray!

Tedsey



#7 mabdou2005

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Posted 20 March 2014 - 12:05 PM

Hi trey

I just have my 18 month PCR it come back negative again as my 9 month PCR . but my 15 month PCR was 0.1% (which is MMR &3 log reduction according to my LAB

I DOM'T know if  My 15 month PCR was positive becouse that i stop taking vitamin C  with S or becouse that i haven't take S  in the same time ( 9pm -1 AM) but the last one i take vitaim c again with med and very sharply  take the mid in 10 pm every day

Did you think that the PCR  tody is negative again due to effect of vitamin c? and i have to keep taking vitamin C  with S forever

Appreciate your input

M ABDOU



#8 Trey

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Posted 20 March 2014 - 08:39 PM

There is no way to know for certain if Vitamin C significantly enhances Sprycel absorption, but it certainly helps to have an acidic stomach for Sprycel absorption.  So I think it helps.  I am the only one I know who has this theory.  So It is just my theory that taking Vitamin C with TKI drugs helps promote better absorption.  It is what I have done, and I do suggest taking Vitamin C with the TKI drug.

Some labs do not report any PCR below .01%  So if you are .0001 they report .01.  That is because the limit of sensitivity is 1 in 100,000 so they do not report lower numbers.  So your 15 month PCR may have been far below .01% but they rounded up to .01% as the lowest number they report. 

Overall you have done very well, and I think you will continue to have great success.



#9 scuba

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Posted 21 March 2014 - 09:46 AM

Cool. You are on your way.


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"


#10 mabdou2005

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Posted 28 October 2015 - 07:50 AM

There is no way to know for certain if Vitamin C significantly enhances Sprycel absorption, but it certainly helps to have an acidic stomach for Sprycel absorption.  So I think it helps.  I am the only one I know who has this theory.  So It is just my theory that taking Vitamin C with TKI drugs helps promote better absorption.  It is what I have done, and I do suggest taking Vitamin C with the TKI drug.

 

Some labs do not report any PCR below .01%  So if you are .0001 they report .01.  That is because the limit of sensitivity is 1 in 100,000 so they do not report lower numbers.  So your 15 month PCR may have been far below .01% but they rounded up to .01% as the lowest number they report. 

 

Overall you have done very well, and I think you will continue to have great success.

Dear Trey

I hope you fine .I am still in PCRU with sprycell this is the good thing .but due to unavailability of S in EGYPT (BMS problem) i will be forced to switch to TASIGNA .my fears form that. first loses 2 year PCRU. or new pain from side effect .also timing of taking T because i don't have fixed time for meal and i cant wait 2 hour before and one hour after specially that i take NEXIUM 40 at morning 1 hour before my breakfast .I don't know how i can mange my other medicine with T .MY  doctor don't till me any thing about instruction or interaction with other medicine .this my homework and i have to do it .i still have 1 package of S i buy it on my own cast I thinking about  reduce the dose to 50 mmg   per day for 2 month before i start T to spent  this package to save spare package of T  .or its a risky idea   

 

RESPECT YOUR ADVICE

THANKS 

M ABDOU



#11 Trey

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Posted 28 October 2015 - 09:35 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.



#12 Kali

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Posted 28 October 2015 - 09:53 AM

mabdou2005,

I hear your concern. I have been on Sprycel and have done very well with it. I am currently at 0.025 and very encouraged.

Now I have learned that the prescription company will not consider sprycel a preferred drug. It will be a non preferred drug. They have gleevic and tasigna on the preferred list and that is it. I am now full of fear if I have to switch. I am very concerned about side effects and effectiveness. I have had minimal side effects on sprycel. I don't understand why it is not a preferred drug anymore.

I hope you get to take a decreased dose like Trey mentioned. Maybe you will not have much side effects that way. I wish you the very best! So happy for you that you have such good numbers on your test!

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%


#13 worriedwife1

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Posted 28 October 2015 - 10:03 AM

Kali,
we are in a same boat, we just recived a letter from insurance company saying sprycel will not be prefered drug any more, but my husband doesnot want to switch to tasinga due to the food restriction, not sure how much the copay will be if he continues to stay on sprycel. it is always one thing after another :(

#14 Kali

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Posted 28 October 2015 - 10:09 AM

It makes no sense when Sprycel is one of the well respected drugs. I keep reading it is one of the three drugs they use first. And, now we have other drugs if needed. To only consider two drugs all from the same company is very interesting. No other TKI's are on the preferred list. They were, but now it is changing with th new year!!

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%


#15 RayT

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Posted 28 October 2015 - 02:54 PM

Don't forget how insurance companies osperate. Their job is to provide service (drugs) at the cheapest cost. When a company has 3 TKIs that are (arguably) equally effective at treating CML, the cheapest drug(s) will be preferred and the others not. When generic Gleevec hits the market in February, prices are expected to plunge to $1000-1500/month from the current $8000+. Your insurance company isn't going to pay for a drug (Sprycel, Tasigna) when it's experts are saying there's a drug that's just as effective (imatinib) at 1 tenth the cost. "Follow the money..."

#16 Buzzm1

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Posted 28 October 2015 - 03:37 PM

SNIP

When generic Gleevec hits the market in February, prices are expected to plunge to $1000-1500/month from the current $8000+.

SNIP

When I last checked Gleevec (Novartis) 400mg at Kaiser, effective 08/2015, was $132,000 per/year, $11,000/mo.

The price of generic Gleevec in the U.S., available 02/01/2016, remains to be seen.

 

The question being asked is: why is Tasigna (Novartis) now considered the preferred drug by insurance companies, forcing CML patients presently on Sprycel to switch to Tasigna?  

 

Curious about the comparative prices of Tasigna and Sprycel?  


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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#17 Kali

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Posted 28 October 2015 - 06:33 PM

I asked what the price per month is of Sprycel and learned it is $11,000.

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%


#18 Kali

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Posted 28 October 2015 - 06:34 PM

The price is for 100 mgm 30 day supply

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%


#19 chriskuo

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Posted 29 October 2015 - 03:49 AM

What matters is the copay and the difference between preferred and non-preferred.
The list price is usually higher than the net price negotiated by the insurance company.
If a drug does not work for you or the side effects are intolerable, the doctor should be able to get the drug that works at the preferred copay or close to it.

#20 Kali

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Posted 29 October 2015 - 05:56 AM

Chriskuo, Thank you for sharing this hopeful information about how this works!

It makes sense what Ray said about the money being the reason for changes in these insurance plans. It baffles me that only one TKI company is on the plan. I would imagine that these negotiated prices would run close with each other with all the companies because they would want their TKI to stay on the preferred list. I guess it doesn't work that way. Even though gleevic is going generic, I would think tasigna is still in a price close to Sprycel.

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%





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