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Here goes - first bcr/abl after dose reduction

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The most exciting test since the early months of diagnosis, on Sunday I will go for my first bcr/abl screening since reduction from 400mg to 300mg about 6 weeks ago.

Send good vibes in my direction 😊

EvaH, shouldn't be any problem whatsoever.  During your gradual dosage reduction no extra monthly testing should be necessary; you are still be taking a meaningful amount of TKI so it isn't as if your CML level is going to go anywhere quickly.. The same is true for any gradual dosage reduction; most oncs still unnecessarily require monthly testing.   Monthly testing is done during Stop Studies for the purpose of compiling statistics; otherwise it isn't really necessary.

You should be able to walk your dosage right down, 300, 200, 100 beginning each dosage reduction six weeks prior to your next quarterly test.  You could even go down to 50mg, or 25mg, before attempting TFR if you wanted to (100mg every other day; 100mg every 4th day).    

Buzz

I haven't been tested since April, i reduced dose early July and my doc doesn't yet know.

At some point we need to do what is right for each of us.  Many oncs don't believe in dosage reduction.  You made the right decision.  

I understand your doctor was not willing to advise a dose reduction - but surely you should tell them that you are doing this. I mean, they are not very likely to just chuck you out of their clinic.

David.

I will David, maybe though when the first bcl/abr works :)

Hi Eva ,a fellow rebel .I too have reduced my dose and not told my doc yet ,fed up trying to reason with her  .No way would she consider reducing my Dasatinib from 40 mg to 20 mg even tho I had been undetected for about 16 months so I did it myself 8 months on and I am still undetected ,if she had her way I would be on 100 mg which I refused at the beginning and fought for 50 mg .Good Luck with your next result ,fingers crossed for you .

Great news felix, thanks for the wishes!

Buzz/felix: what's a good period after which i can reduce again? (assuming bcr/abl remains undetected)

EvaH, begin your next dosage reduction six weeks prior to your next quarterly PCR test on 11/22.  Six weeks prior to 11/22; beginning 10/11 reduce to 200mg.

Buzz

Good news folks!!

After 2 months of dose reduced to 300mg (from 400mg) im undectable!

Next stop 200mg - in a few months...

Congratulations EvaH; happy that you are on your way.

Hi EvaH,

Congratulations on your results. I also reduced my dose but was conservative on my approach and waited for at least two consecutive good results to feel comfortable going down further. My thinking was that BCR-ABL levels might not go up that fast in dose reductions, unlike TFR, especially if levels are very low already. For example, before reducing my dose from x -> y -> z I wanted to make sure that in case a rise happened in z it could mean that is too low of a dose and that I could go back to y. Going from y -> after one good test and then get a rise in BCR-ABL would put a question mark on y and z

Just for completion, I went from 600mg to 400mg in a span of several months. I wasn't in a rush, and honestly don't want to go down further than that at the moment. Some blips happened along the way but I kept patience and  the dose reduction schedule. Currently PCR robot says my BCR-ABL is <log 4.5.

Good luck :)

Update: latest bcr/abl is undectable, current dosage of 200mg ( down from 400mg earlier this year)

Thinking of going directly for a TFR attempt.

EvaH, it's your prerogative to do so if you choose, but by first going down to Imatinib 100mg, should you fail TFR, you can restart at 100mg.  You can also continue to reduce down to 50mg, or even lower.  Will your onc/hema prescribe the 100mg pills for you or would you resort to taking 200mg every other day?  shweflen, on the U.S. CML discussion forum, after failing TFR, restarted on Imatinib 100mg and has now been on Imatinib 50mg for nine months.  He can likely go even lower if he chooses to.

Wishing you the best whichever choice you make.  Younger CML patients, those under 55, tend to have less success with TFR.

Buzz

I am still being given 400mg tablets so it's hard to make them into 100mg

EvaH, you can just take Imatinib 200mg every other day.   

Destiny data showed that chances of successful TFR were better if undetectable was maintained at half dose, in the case of that trial over 12 months. If there was a slow drift upwards, TFR was less likely to be successful. Prof Clark's presentation from the 2019 patient days is on this link.  I would suggest looking at this to see if that helps your decision making.  

Hii

TFR

HOW LONG TIME POSSIBLE in TFR ( ANY DATA)

ANY ONE PERSON live with long term TFR and continue...?

(sorry for bad english)

TFR

(1) HOW LONG TIME POSSIBLE in
TFR (maximum) ( ANY DATA)

(2) ANY ONE PERSON live with
long term TFR and continue...?
(any hope long time tfr 5-6-7
++year)

Any information... Please reply

My daily dose 600 mg..

Last 2.5 years

25 days 600 mg
20 days 400 mg
10 days 200 mg
25 days 000
10 days 200 mg
20 days 400 mg
25 days 600 mg...

Cycle continues...

3 Report UNDETACTABLE
(every 8 months pcr report)

PLEASE reply any information...

24 Nov 2021 undectable at 200mg

Whoop whoop! One step closer to TFR

Please reply

If you have any information...

Update: 17 jan bcr abl shows undectable and im now 1 month tki free

:-)

Update: 17 jan bcr abl shows undectable and im now 1 month tki free

:-)

Great news and thanks for updating....more undetectables to follow

I wish you well on your venture, and hope to inspire others when will work!

i have a question, how can you lower the dosage without the doctor not knowing it, if he/she needs to prescribe the pills? Do you cut them yourself? For example i take 80 mmg ( i know its a lot) but i have to reorder monthly, and I wouldn't trust myself cutting it...

so how you take less than what's prescribed?

thanks in advance and good luck...

please keep us posted on your progress!

Gian P, please relate your CML history so that we have a better understanding of your situation.

Thanks,
Buzz

I was taking 400mg imatanib which were 'scored' in the middle and quite easy to break in two.

At first i took them in the following pattern each day: 400mg, 200mg, 400mg, 200mg etc

Then i took each day 200mg for a while.

Then 200mg, 0mg (pill free day), 200mg, 0mg, etc

Then i stopped and I'm now on monthly monitoring. Bcr/abl is a very expensive test, its a fight with insurance every month to get them to pay.

Please note that i don't recommend changing dosage without talking to your doc for most people. My situation was particular AND once i successfully reduced to 300mg (from 400mg) , I told my doc.

Yes, and thank you for your response,

i was diagnosed July 2018, since then the only TKI drug my body would take was Sprycel, i started at 100 mmg but i had to stop because my platelets were plummeting to the 40's, so we took breaks in between until my doc found that 80 mmg Sprycel was the right dosage for me.

i have been on Sprycel 80mmg for 1.5 year, since then my values have been consistent and acceptable, platelets on 100's CBC in line and BCR abl ( last test result ) 0.038, however it fluctuate between 0.038, 0.012,0.056, it seems that won't go dow to undetected...

I got covid in January 2022 and was a very mild flue for me, thankfully, but i feel more tired than usual, light headed etc since. I took bunch of test and as a result, Vitamin D 34ng
and all my CBC were lower than usual, 

WBC 3.0ul

RBC 3.85 ul

HGB 12.5 g

Hematocrit 37%
my doctor wants to repeat the test in two weeks, so will see...

as i was reading yesterday the comments, i realized that I don't take enough Vit D ( i take 200 iu  VS 7500 iu that i should take, and i also ordered heme iron supplement that hopefully will help my Hematocrit level,

I am waiting for my last CBR abl results, amd that why inwas curious about lowering the dosage, and how, i hope that someone can advice on some of my condition, I don't feel in terrible shape, just tired.

 Thank you all for your time.

gian

 

Thank you 

and yes, i would check with my doc, as i normally do, im sorry that they give you such of hard time with testing, unfortunately our condition can be very expansive.

Eva, during the Stop Trials testing was done monthly for the purpose of compiling statistics.  Since you aren't in a formal Stop Trial it isn't necessary for you to test monthly.  Once detected, it typically takes at least two months to reach, or exceed, MMR, 0.1, clinically considered to be relapse, so if you test undetected, you can wait two months before retesting.  Some even continue to test quarterly during TFR attempts (there isn't that much to worry about).  Once you test detected then you should test monthly to see if your CML level progresses to relapse.  You are welcome to continue to test monthly if you feel the need to do so.

Thanks that's useful buzz, especially since I'm traveling and can't get time for tests every b month.

My doc seems to be following some US procotol guidelines.

I'm fairly sure tests every 2 months will need pressure on the insurers too ;)

GianP sorry to hear that you're having a tough time with settling into the right TKI. I feel i was very lucky with my recovery trajectory, i had early trouble with platlets.

For info: im on 5000ui d3 and 400mg magnesium daily and some vit b12 (as i tend to get anemia since cml). Ive managed to dodge covid so far.

Do make sure your b12 and iron lebels are correct if the tiredness remains and best wishes for getting back to 100%

GianP sorry to hear that you're having a tough time with settling into the right TKI. I feel i was very lucky with my recovery trajectory, i had early trouble with platlets.

For info: im on 5000ui d3 and 400mg magnesium daily and some vit b12 (as i tend to get anemia since cml). Ive managed to dodge covid so far.

Do make sure your b12 and iron lebels are correct if the tiredness remains and best wishes for getting back to 100%

Thank you ,

i am confident that i will make it out, i just need to find the right path, im waiting on my CBR Abl results and i can't wait for it!

best luck to you as well...

Gian, based on the results you receive on your last BCR-ABL test, you may be able to begin gradually reducing your TKI dosage.  When a CML patient has maintained either, undetected, or a very low CML level plateau, for a prolonged period of time, generally, a year, or so, they can typically begin to gradually reduce their TKI dosage without it having an adverse effect on their CML level.  When CML levels are plateaued they typically drift lower with time and do so regardless of dosage.   Let us know the results of your test.

Thats what i hope, i think Sprycel high dosage come with many side effects, that alters the normalcy, i look forward to those days, for now i ned to work to fix my Low Glucose and Low Vitamin D which affects my life style too much.

 Thank you 

i will keep you posted.

Thank you Buzz, god bless you for your response, i will keep everyone posted, i must add, that this group have helped me tremendously even on very negative times, i treasure everyone support and while everyone body is different, with different reactions  we all share the same goal to reach undetection, because we know that we have to live with it.

Thank you 

Hello everyone,

My recent BCR Abl from January came back at 0.029 , from 0.039...

i know you know how i feel right now!! SO HAPPY...:)

I am debating cut in half my pill and see next three months, but im a bit scare... any advices you can give me?

you should know, that historically my levels always stays within those ranges, never being undetected and while now is .29 and last test .39 next can be .49 and I won't be surprised ( neither my doctor) 

please advice.

 Thank you 

Gian, based on the results of at least your last four quarterly BCR-ABL tests, you are in a plateau and should be able to begin gradually reducing your TKI dosage.  For the benefit of others, please repost the results of at least your last four BCR-ABL results along with the test dates

Six weeks before your next quarterly test begin alternating your dosage, taking 80mg one day and 40mg the next day, for an average of 60mg.  Your late April BCR-ABL test should continue to fall within the established plateau range.  If everything goes accordingly you can reduce your TKI dosage to 40mg six weeks prior to your late July BCR-ABL test.

Plateaued CML levels tend to drift lower with time and do so regardless of TKI dosage.

Buzz

i will definitely start that routine and keep everyone posted about the results, Buzz thank yiu for taking your time and articulate the process, i am still not sure how precise my splitting of the 80 mmg will be, because the shape is triangle.

here the last 5 results in order old to new.

i also invite anyone else to offer their advice, based on their experience.

thank you!

3/24th0.051

5/7th 0.026

8/2nd .054

11/9th .039

1/28th .029

Oh lordy, triangle tablets...not easy!

Maybe you can dissolve them in something (vodka?) and use the required amount of liquid each day.

Vodka sounds great! I might have some 60 mml around... i can start with those;)

thank you!