Sokal Index

Sokal is often still used at diagnosis just because it sort of always has been. It is not a good determinator of TFR attempts on its own, but it does seem to capture some of the important pieces and just because it’s not modern doesn’t mean it should be discarded. For example the percentage of patients with a low, intermediate or high Sokal score who achieved TFR in the TWISTER study was 51%, 37% and 25%, respectively.

ELTS scoring is the newest of the lot, but it’s not so tried and tested. The thing is these scores are more useful from a research point of view to seperate patients into cohorts and are not always useful on an individual basis.

Personally, I have a Sokal score of high, a Hasford score of intermediate, a EUTOS score of low, and an ELTS score of high. So take your pick!!

That said, given I have had a recent disastrous TFR attempt (failed in just 4 or 5 weeks) the Sokal and ELTS scores might be more on the money.

David.

Thank you David and Martin for very informative responses. This is very helpful to me. I haven’t been scored but will ask to be once I approach the time where I am eligible for TFR.

I am already over a year at undetectable and I must admit when I read about people attempting TFR I seem to be under the impression that in the least you get a 6 month vacation from TKIs. Now I’m not so sure and in fact I am leaning to just lowering my dose over time. I don’t mind a vacation but not at the cost of going through withdrawal and then having to go through the re-introduction of TKIs and all that involves.

I know they are developing tests to determine who may be responsive to TFR but not sure those tests will be available any time soon.

Martin good luck Tuesday we’ll be pulling for you. Have you tried Nilotinib? I ask because I became resistant to Imatinib but quickly hit CMR on Nilotinib after an initial fumble on my part.

Thank you guys much appreciated.

Pojo

Yes this site is nice provided you have all the component info. The spleen size and %blasts are the ones I will have to ask my oncologist about. Is any of this available in the PCR reports?

Very nice. I see my doc in June and will ask him to perform the spleen size on me. I’m actually performing it on myself, I’ll see how close I come to him.

It would be interesting to run an informal survey of scores from willing participants to this site, maybe we could glean some interesting observations.

Martin 19 months off TKIs, now that’s a milestone. Perhaps your immune system has regained its defenses and it’s now doing its job against BCR/ABL.
My mom died from CLL and my sister also has CLL but the difference is my sister only had to get 1 course of chemo to keep it under the radar in her life and she’s nearing 70. I wouldn’t be surprised if that could be the case with you.

This has been a good discussion.

Thanks!

I am on my third oncologist. Not sure all of the original diagnosis info has been carried over through the years.
But I will certainly inquire with my current doc.
My fear is that he will cry foul and say “Why?”
He’s so sensitive when I talk shop with him.

For example he gets really annoyed when I tell him my goal is to get to 150mg per day at some point.
His position is that if it’s not in the current recommendations then he’s not willing to try anything new.
He says going under recommendations could possibly promote mutations.
When I say I don’t care I want to lower my exposure, he then threatens to drop me.

As I get closer to my appointment in June I may reach out to you David.

Much appreciated David.
Someday you will have to tell me your experience regarding your TFR attempt.

Thanks,
JP