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Post your CML history and ask others to comment on it ... we all may learn something.

Post your CML history (except Vikram) and ask others to comment on it ... we all may learn something.

Most CML patients take far more TKI than they need.  Reduce your TKI dosage as early as possible, gradually, to as low as possible.

This eliminates side-effects, some of which are permanent.  After almost five years of Imatinib 400mg, at my onc's insistence, I ended up with greatly reduced circulation in my legs.  I had suggested dose reduction after three years, because I was undetected for long enough.  Finally told her that I was going to reduce my dosage with, or without her ... too little, too late, the damage was done.

One of the frustrating things about this forum is the lack of a continual updated CML history for each participant; it answers a lot of unneeded questions.   

Feb-may 2016 Occular aura symptoms which the eye docs tell me are an inflammed optic nerve indicating a systemic problem rather than an eye issue

Dx June 2016 in chronic phase with 330,000 wbc per microlitre and 1.5 million platlets. I'd noticed minor symptoms of loss of appetite and feeling a bit unfit and occasionally hot. Slightly enlarged spleen. Immediately put on hydroxyurea, later put on 400mg imatanib after bone marrow biopsy indicates there's no mutation and I'm Ph+. Wbc immediately fall but Platlets spike to 2.5 million before coming down.

3 month bcr/abl shows less than expected response so I'm switched to Tasigna around oct/nov. I note occular symptoms again but the docs ignore it.

Dec 2016 I start to retinal bleeds and loose vision in one eye no one is sure exactly why so we switch back to Imatanib.

Jan 2017 diagnosis with luekostatis retinopathy in both eyes, retina has been compromised by the CML. Prognosis of possible loss of 50% vision in both eyes, but this is averted by multiple avestin injections over 2017.

April 2017 MMR achieved: bcr/abl undectable. Testing is every 6 months and later every 3 months because i changed countries and norms on tests were different.

May 2021 after 4 years of undectable bcr/abl i consider self administerd dose reduction as my hematologist isn't keen on trying it. Around June i reduced from 400mg to 300 mg, 6 weeks before my scheduled bcr/abl.

Nov 2021 Dose successfully reduced to 100mg, my hematologist-oncologist now encourages me to go for TFR with monthly testing.

Mar 2022 bcr/abl shows up slightly dectectable but still in MMR. I experienced a lot of anxiety and self doubt. Aprils test is back undectable.

Sept 2022 Reverting to bcr abl tests every 3 months.

EvaH, you could have begun dosage reduction about three years earlier, but it's great that you are finally TFR.  It isn't necessary for you to continue to test monthly unless you test positive and if you should happen to relapse, restart on Imatinib 100mg.

Wishing you the best.
Buzz

Why you mention my name???

CML should never be treated in the way that you chose.

I would encourage anyone who has been maintaining undetected on low dosage for a considerable period of time to gradually lower their dosage even further with the possibility of weaning yourself off of your TKI at some point in the future

Someone on Dasatinib 20mg might begin by skipping every fourth day which would result in a 15mg/day average.

If you are detectable at a low level while maintaining on a low TKI dosage, there is still a very good chance that you can lower your dosage without an adverse effect to your TKI level.  Please post your CML history.

 

Hi Buzz,I have gradually reduced down to 10 mg per day as per your advice a while ago and touch wood I am still undetected.At Christmas it will be 5 years since diagnosis so think I might try TFR in the new year .My Doc Wont agree because she said you can't go treatment free when on a second TKI only if you have stuck with one .So you can see what ime up against ,that's why I have reduced dose myself over time and told her after I have done it and she's not happy .Thanks for all the good advice you give us .Regards ,Denise.

Denise, that's great news.  How long have you been on Dasatinib 10mg?  If long enough there isn't anything preventing you from taking 20mg every third day, progressing to every fourth day, etc.  

PS: I've never heard that you can't go TFR when on a second TKI nor do I believe it to be true.

Hi Buzz, I really liked your idea of skipping Dasatinib every fourth day!

On our last appointment, 3 months ago, my consultant suggested TFR. She is a renowned CML expert, so I value her opinion very much.              Still, I felt both happy and worried about TFR, really 'conflicted' you might say.

I speak to her again in two days time, October 13th, and I actually meant to suggest taking Dasatinib every other day.  But I kinda feel safer with your suggestion.

Was diagnosed 5 years ago, last 3 years been on Dasatinib, 40mg for a short period, then 20mg. No adverse effects that I can tell.

Undetected for last 3 years, therefore consultant suggested TFR.    BUT tell you the truth, am I ready for it? No, not really!

I think it was Eva who said you have to be in a good place within yourself, before attempting TFR, because TFR is tough. In my opinion she is right. I know some people are rearing to go, and it is wonderful; but for me, I'd rather take it  v e r y  s l o w l y.

October 13th will still be a telephone appointment, (as it was for the last two years), but I hope I can put my point across; that I do not feel ready for TFR yet.

Thank you Buzz for your valuable advice, and the suggestion that we start writing about our 'history'....

Take care,

pigeon

 

 

 

Thank you Pigeon; wishing you the very best.  Should you reduce your dosage there is no real need for extra testing.  

Buzz

9 years later this month.  Currently taking 200mg Tasigna 2x per day.  Bounce between undetectable and barely detectable. Will probably go down to 150 2x per day after next appointment.  Take the pills, live your life. 

JPD, you should be able to continue to reduce your dosage without any adverse effect to your CML level.

Buzz

 

09/2012 p210 transcript b3a2 and b2a2 118.683% IS (88.57%), p190 transcript e1a2 0.01% @ Dx, bone marrow biopsy, t(9;22) translocation in all 20 of the metaphases examined, FISH - 93%, WBC 65.5, began Gleevec 400mg/day, with allopurinol 300mg/day for a few weeks.

12/2012 003.590% IS (1.438%) & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome, FISH - 5.5%

2013 000.914% IS (0.813%), 000.434% IS (0.574%), 000.412% IS (0.611%)

10/2013 000.360% IS (0.859%) & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormality

2014 000.174%, 000.088%, 000.064%

2015 000.049%, decrease to Gleevec 200mg/day, 000.035%, 000.061%, 000.028%

2016 000.041%, 000.039%, 000.025%

2017 000.029%, 000.039%, switched to generic imatinib 200mg/day, 000.070%, 000.088%

2018 000.233%, switched to Sprycel 100mg/day, Sprycel at 100 and then 50 mg/day did not agree with me so I went back to generic imatinib 300mg/day. 000.013% The Sprycel did seem to be effective. It was probably just too high of a dose for me. Went back to a lowered dose of Sprycel,  000.007%, Sprycel at 25 mg/day seems to working, 20mg/day Sprycel or 200mg/day imatinib, 000.006%

2019 000.007%, 000.007%, PCRU - none detected at limit of 0.0069% (however, very weak qualitative amplification is still seen), 000.004%

2020 000.029%, <000.0069% weak positive? (new lab, specimen didn't meet validated stability/temperature requirements), Weak Pos < 0.0069%, 000.0471%, Gleevec 300mg, 000.0447%

2021 000.0558%, 000.1499%, increased to 400 mg/day Gleevec, 000.1043%

2022  000.1290%, 000.0671%. 000.0264%

 Buzz, thanks for the reassuring words, i have a question, hopefully you or other can help me understand, i had CML for 4+ years now, diagnosed on July 2018, i was started with Gllivec but that affected my Platelets so i had to swi h to Sprycel 80mmg, i have been taking it for 2+ years, my levels are good and i feel good, however my BCR abl is never been undetected yet, my value were from 0.034 to 0.015 in May and June to September 0.119 and October 0.134, i retested in October because September was unusual, and still went up! What you think? Should i lower the dose? Change TKi? It gets annoying all the rollercoaster ride at every blood test… 

please share with me your thoughts… thank yiu all. Gian

Gian, in that your CML level has increased rather substantially in September and October I wouldn't recommend that you reduce your dosage at this time.  If your CML level continues to increase, again somewhat substantially, with your next test than I think you need to seriously consider changing TKIs.  Has your hematologist/oncologist offered an opinion?

My oncologists in September 0.119 recommended to test again in October, 0.134 and i just got my results back, so I suspect a call tomorrow, i m not sure what she could say to do, but i am a bit worried, as why would go up. I will keep you posted. Thank you again.

Pigeon —-You have to do what’s right for you , it took me along time to reduce my dosage( glivec) but eventually I did, not completely I’m still in 200 mg .for my mental health I will be staying at. That x

Thank you Kathy, just as you said, we have to do what we feel is right for us, and we are all different. Like you, I feel that at this point in time it is not right for me to stop treatment.

My consultant agreed to a reduced dose, i.e. dasatinib 20mg every other day. She laughed and mentioned that this is virtually a homeopathic  dose (fine with me!)....

I can tell you, I am not going TFR anytime soon.

pigeon