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Pick Your Poison.... (TKIs actually)

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So today I had the CML diagnosis confirmed, and the good news was no unusual cytogenic weirdnesses other than the standard Philadelphia chromosome.

My 'risk level' though came in as 'high', so my haematologist wants me to go onto a 2nd generation TKI to get on top of it quicker if possible, and has given me two options to consider - a 'pick your poison' as it were - between Dasatinib (Sprycel) and Nilotinib:

I'm obviously going to read up as much as I can on both of them, but was curious what your experiences were with these?  I'm starting on one or the other of these next week pending an echocardiogram (apparently the consultants at my hospital genuinely thought it was a toss-up in my case and it was more 'choose which side-effects you want').

Dasatinib and nilotinib are similarly effective and are both excellent drugs.

However, you have to fast for 3 hours, twice a day at 12 hour intervals on nilotinib ... and no fasting at all on dasatinib. You can't predict most side-effects so notwithstanding the results of the EKG, if I was choosing between them I'd definitely choose dasatinib (which I currently take).

David.

Like you I was “high risk” and was started on Nilotinib. If I’d had the choice I would have picked Dasatinib to avoid the x2 3 hour fasts and having to pop x4 pills a day. I’ve done ok on Nilotinib after 2.5 years bouncing around MMR but not quite. Side effects mostly negligible. Fatigue has been a pain lately... but that might be a bit of depression.

On this forum I see more success with Dasatinib as a second gen drug and I saw a chart recently that showed that Nilotinib is actually higher in toxicity than Dastinib for various reasons one of those that caught my eye was cholesterol and onset of diabetes/blood sugar.

Sorry to hear of your diagnosis and good luck.

Alex

Risk scoring is weird for CML - as some of the scores are based on pre-TKI era.

For example, I am high for SOKAL, intermediate for Hasford, low for EUTOS, and high for ELTS!

So it's important to know which scale your score is based on. I believe that ELTS is really the one that is most aligned with the TKI era and is the most modern.

If you know your platelet count at diagnosis, how far past your ribs your spleen was, and the % of blasts in peripheral blood you can calculate your ELTS score here:

https://www.leukemia-net.org/content/leukemias/cml/elts_score/index_eng....

David. 

 

Yeah - that's my situation too.  High for SOKAL, but medium for ELTS.  My haematologist said that in some ways it doesn't really matter as the treatment options would be the same either way, and I have a very high level of confidence in his, and his department's knowledge.  (I've been one of those "difficult" patients who reads up on EVERYTHING before the appointment and asks lots of technical questions - he's been great with this, and in some ways I think appreciates someone who takes the time to swat up on the condition.)  I'm being seen at St George's in Tooting, South London.  Anyone else been there?

 

 

SOKAL was defined in 1984 - when CML was pretty much a death sentence. So I think it can be largely discounted, to be honest, when we have more refined scoring mechanisms in place. I'm sure there must be some benefit to scoring it, or it wouldn't be done. But ELTS was defined with long term survival in mind, so I think really is the one to pay most attention to at least from the patients perspective.

You can read a good paper here describing why ELTS is superior to SOKAL.

https://www.nature.com/articles/s41375-020-0931-9

David.

Oh I didn’t know this. I was SOKAL scored “high risk” platelets 900 and something wbc 330 and spleen 22cm below margin. I’ll see how I compare on the ELTS. Would be great if we were all scored on the one and the others were scrapped. Seeing the word high risk on my early paper work worried myself and family possibly unduly. I thought it is was curtains!

Thanks David for the info.

I just ran the test came back as 2.0174 intermediate... that sounds better than “high risk” lol. 

I'm leaning towards Dasatinib, because the Nilotinib has a higher rate of strokes, and whilst I know you can't predict your side-effects, that is one side-effect I want to avoid...  Where Dasatinib seems worse is a higher rate of 'pleural effusions' which I understand to be fluid pressing on your lungs (one study had this risk at around 25-33%).  Has anyone had that, and how much of a pain is it?  My haematologist seemed to suggest it wasn't too bad of a side-effect to have - if you get it, you stop taking the TKI till it goes away and worst-case-scenario, you need to have the fluid drained.  If it means I'm short of breath maybe I can manage it.  If it's a lot of chest pain though, maybe not?

 

 

Hi, if your Doc would let you start on 50 mg instead of 100 mg ,pleural effusions could be avoided .But I don't know if he would agree with this dose because you are only just starting off ,Good Luck ,Denise.

I ditto Felix.  Your doc will probably not go for 50 (even though there is evidence from a study to say starting with 50 dasatinib is fine), but you'd probably be OK for several months at 100.  If you show a nice fast downward swoop, he'll be more amenable to reducing to 50 and you'll probably be able to avoid the pleural effusion.  Yes, that 30% incidence is correct.  The bothersome-ness of it varies wildly.  Some people have very little fluid but a great deal of shortness of breath.  Others can be alarmingly topped up, but with no symptoms.  I've had 4 pleural effusions, and without giving the story of each one, I can tell you that I never knew I had it and they were discovered by accident.  Each time they went almost completely away off dasatinib, but the problem was that my PCR zoomed back up pretty fast.  This does not happen to everybody, however.  Many people can wait it out, get rid of the effusion completely (this can take anywhere from 3 weeks to 6 months - maybe longer) and still not lose MMR.  Be assured that you can regain your good PCR number after starting up dasatinib again - this has been proven again and again.  Draining the fluid, similarly, can be a one-off walk in the park or a chronic ordeal - people have different experiences.  I was able to reduce from 100 to 70 to 50, but still got the pleural effusion back.  My enthusiasm for dasatinib was such a motivator, that I convinced my onc to try 20.  That seemed to do the trick - I have remained with double zeros to the right for the whole time (about 2 years on 20 now) and have only minimal residual fluid that doesn't bother me or the pulmonologist.  I see him once a year and get a chest x-ray.  Here's a tip for if you do decide on dasatinib: anytime anybody listens to your lungs with a stethoscope, be sure to have them go much, much, much lower on your ribcage (down at your waist) to listen, because otherwise they'll miss a beginning effusion.