Newly diagnosed with CLL after living with ET for 21 years

[AndyT]

Following 12 months of rising lymphocytes I’ve just had confirmation that I’ve got CLL. Not great news but genetic tests are encouraging, so I’m low risk watch and wait at this time.

This comes after 21 years of living with another form of blood cancer, Essential Thrombocythaemia (ET for short). That’s under control and like CLL is a chronic condition with good life expectancy if properly monitored and managed.

Trying to get my head around whether the rare situation of having both ET and CLL adds any particular risks or whether, as my doctors are suggesting, they’re just separate conditions to be monitored and treated separately.

Is there anyone else on here with the same two conditions and anything they’ve discovered about having them both?

Thanks in advance!

Andy

[Jetliz]

Hi AndyTNot quite the same scenario but I have CLL and my daughter was diagnosed with Polycythemia Vera in the same year which as you'll know is very similar to your diagnosis and under the same umbrella of conditions. Both our consultants have said there's no correlation between the two just coincidence. Only this month I saw a different consultant and she said who knows one day they may discover a link between the two. It's interesting to hear you have two together. Wishing you well.

Jetliz

[AndyT in reply to Jetliz]

Hi Jetliz - thanks for responding - hope you’re both doing OK

[lankisterguy Volunteer]

Hi AndyT,

Here are the 10 previous posts that mention it: healthunlocked.com/cllsuppo...

(the USA spelling without the "ae" )

You may find some useful information in those.

Len

[AndyT in reply to lankisterguy]

Thanks Len - I’ll definitely have a look at those!

[Spark_Plug]

Hi AndyT, thank you for telling us that ET(Essential Thrombocythemia) is what you're dealing with, I thought you've been dealing with an alien whining about making a phone call for 21 years.

Seriously, having these additional conditions can inform the community about how varied results and interactions can be, I look forward to your vantage point in the future. 🙂

[chocolatecomfort]

Hi Andy, have never posted on here before but was diagnosed with Cll in Oct 2023 and on watch and wait. This November 2024, during blood tests was also diagnosed with ET. My consultant said its extremely rare to have both conditions and is seeking advice from colleagues, have a follow up appointment with her in Jan 2025. Can I ask, how does having both conditions affect you ?

[AndyT in reply to chocolatecomfort]

Thanks for getting in touch - it’s interesting to hear from someone else who has both CLL and ET - it does seem to be a very exclusive club!

The only real difference I’ve noticed since being diagnosed with CLL is that fatigue is more of a problem and I can’t help wondering if that’s the cumulative effect of having both conditions.

I’m lucky that my haematology team are very well informed on both ET and CLL and seem to be working together across the two clinics. I’m being treated for ET (since 2015) but not yet for CLL as that’s early stage - no doubt there will be interesting discussions about the best way forward if I need to be treated for both in a few years’ time!

I’m seeing both teams in February - I hope your January appointment goes well.

[chocolatecomfort in reply to AndyT]

Thanks Andy