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On Sprycel - Last 5 months PCR Question

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#1 elvis


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Posted 13 September 2014 - 10:24 AM

5.5 years since diagnosis Chronic phase CML.


First 1 year on Gleevec 600 mg.  Did not reach CCyR hence was asked to switch to TAsigna 800 mg.


switched to Tasigna 800 mg 4+ years (close to MMR).  0.1 (international scale)


Onc switched me to Sprycel 100 mg about 6 months back to push the response further and also due to side effects.   There was some immediate drop in PCR.


First PCR on Sprycel - 0.05 (IS)

Second PCR on Sprycel (0.035) (IS)

Third PCR on Sprycel (0.040) IS


Any concerns between second and Third PCR.  I was expecting it to incrementally go down this time but it marginally moved up.  My onc considers this stable and ok to continue with 100 mg.


Any thoughts?? Should I worry.


Also I take lemon juice in hot water to manage my ALT/AST elevation 2 hours before or after sprycel. 

Will it affect sprycel bio-availabilty?




#2 Trey


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Posted 13 September 2014 - 01:18 PM

You are well below MMR, so no worries.  PCRs are not accurate enough to worry about any such tiny increases.  You have effectively used the various drugs to your benefit.  Good to see how well you have done using them. 


Lemon juice does not negatively affect bioavailability.  But since TKI drugs uptake better in more acidic conditions, you might actually want to take the lemon juice with the TKI.

#3 elvis


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Posted 13 September 2014 - 01:35 PM

Thanks Trey.  Hearing something from this board is more reassuring and supportive.

#4 LivingWellWithCML


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Posted 13 September 2014 - 03:31 PM

You are doing great! What is the concentration of lemon juice to water mix that you make? Sounds like it has some benefit for liver enzymes...

Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg

#5 JPD


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Posted 14 September 2014 - 09:26 PM

Trey - whats this acidic conditions/TKI stuff?  Should everyone be driking lemon juice while taking their meds?

Elvis - what were your side-fx with Tasigna?  And did they occur from the start or come on later (cause Im having very little probs with Tasigna 600mg and am hoping I dont have em on deck anytime soon).

January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%

#6 Damerault


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Posted 15 September 2014 - 11:48 AM

Hi am totally new to the LLS.org website and posting on these boards. I apologize for any questions that are simplistic but this is all new to me. I was diagnosed with CML last November but have not been able to get it under control due to both Sprycel and Tasigna attacking my healthy blood cells. I am currently on Tasigna lower does of only 300 mg once a day. Side effects are pretty bad with headaches, dizziness, weakness and nausea. But, I don't know if those are intensified due to my low blood counts. A couple of questions;


What do the terms CCyR and MMR mean? ALT/AST elevation?


What is a PCR Count?


Elvis, I am also curios about your side effects on Tasigna.


Is Lemon Juice recommended to take with Tasigna?


Sorry to ask so many questions but I am looking for help anywhere I can get it. If I can't get this under control my next option is a Bone Marrow Transplant.


Thank you. Diane.

11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000

Be well, Diane.

#7 Trey


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Posted 15 September 2014 - 09:00 PM

TKI drugs are taken up better from the digestive system in acidic conditions.  Of course, the digestive system is naturally acidic.  I took my Vitamin C along with the TKI to add acidity.  No way to know if it helps.  But anyway, that is why I said take the lemon juice with the TKI. 

#8 elvis


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Posted 15 September 2014 - 10:27 PM

Hi Dan,


I take about 1 Lemon cut into two and use two half cups of warm water. I heat it in microwave for about 45 seconds.

It seems to bring down my ALT and AST by at least 10-15 points (because it used to hover around 45-50 for ALT and AST)  It comes down to normal range (about 35-40) when I use lemon with hot water.  If I stop taking lemon with hot water in one of the lab cycles it creeps up to 45-50 range on ALT/AST.  Not sure it will work for higher values of ALT/AST.

#9 elvis


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Posted 15 September 2014 - 10:34 PM

I had serious skin rash with Tasigna. It is so bad it did not subside 6 months after stopping Tasigna 800 mg.  But I did not stop taking Tasigna 800mg because of this rash.  It is like having permanent goose bumps all over upper half of the body 24/7.  I took Hydroxyzine HCL 25mg and Lubriderm with corticosteroids for about 4 years during the Tasigna.


Two reasons why my onc switched me to sprycel. I flat lined on the PCR response for quite sometime. No significant movement and numbers plateaued and my skin rashes.


So my Onc took a decision to switch me to sprycel and see if the side effects is somewhat controlled.  Right now my face cleared from darkness introduced by Tasigna and my upper half of the body is somewhat cleared but not fully cleared. It is about 6 months on Sprycel. Reading my note on rash it may not look significant. But my dermatalogists, oncologists all felt it was a major reaction to Tasigna by my body.

#10 elvis


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Posted 15 September 2014 - 10:49 PM

Responses to Diane's question based on my limited knowledge. There are more experts than me in this board so consider this my 2 cents.


What is CCyR?

It stands for Cytogenic response.  It means using FISH (Flourscent in-site hybridization Test) they don't find any leukemic cells. They roughly count about 300-500 white blood cells if I am not mistaken from the blood draw or bone marrow draw.  Typically a good indication if FISH comes out negative.  When you are diagnosed with CML the first response you get is Hematological response when you get regular CBC numbers including WBC in normal ranges or near normal ranges.  The second stage of response is Cytogenic response which is FISH negative.


What is MMR?   MMR stands for Major molecular response. It is considered to be 3-log reduction from the initial amount of leukemic cells detected at the time of diagnosis expressed as percentage. for 3 log reduction divide the original number 1000.  RT-PCR(Reverse Transcriptase -Polymerase Chain reaction) which is a sensitive test that measures even extremely low residual CML disease.


ALT/AST - liver enzymes that tells the doctor how well you are tolerating the drug. Are there any serious adverse reactions in the body since all of the TKI's are metabolized by the liver.

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