Dr visit

[Kiwi77]

Hi everyone been a different Dr today I am 77 on watch and wait diagonosed 2021 on leaving he said you can live twelve years with CLL so dont worry you will be in your late eighties lol has anyone who got cll in there seventies still here in there late eighties and feeling good it made me smile.😃

[country76]

I have probably had it over 20 years.

[Kiwi77 in reply to country76]

Fantastic😀

[AussieNeil Administrator]

Your doctor needs to do more reading! We have some members in their 80s and 90s, a few of which are in treatment. About 55% of those treated with FCR who needed to be ideally under 65, are effectively cured, with early trial participants having entered their third decade after treatment. Some weren't under 65, including a mate of mine who was in the international CLL trial, and are now in their 80s. Some people who commenced treatment in the early ibrutinib trials are now entering their second decade of treatment, (though usually resistance develops earlier). Most of those early trial participants had gone through watch and wait and had developed resistance to available treatments.

The median age of developing CLL is in the early 70s, then on average after about 5 years of watch and wait, people need their first treatment. I've seen clinical trial reports when some participants had gone through over 10 lines of previous treatments!

In New Zealand, as in Australia and other countries with universal health care, prognostic marker testing isn't done until you need treatment. That's because other than IGHV mutation status, the results can change over time, so there's no practical reason to test, until the decision of what treatment should be given needs to be answered. So it's a bit more difficult to know how long you'll last before needing treatment until you get there, as you have found out. Ironically, in New Zealand and Australia, you need markers that are 'bad' for chemoimmunotherapy treatments like BR and FCR to qualify for non chemo treatments. You should now be able to get FISH testing done and that can give some indication on how long your remissions will last.

In closing, a CLL diagnosis is usually taken as a wake up call to look after your health better, by improving physical fitness, nutrition and weight, etc. It's possible too, to use the increased medical monitoring and regular blood tests to identify and treat other developing illnesses early, for a better outcome. With infections being a leading cause of death, just getting up to date with non-live vaccinations can improve life expectancy. I honestly expect than any regular reader of community posts who is prepared to act on what they learn, will add several years to their life expectancy.

Neil

[Kiwi77 in reply to AussieNeil]

Thanks so much Neil you are so helpful and make everything easy to understand I love this site everyone is so kind and it helps everyone 😀

[Garston in reply to AussieNeil]

Thanks Neil feeling better after reading your post.

[SofiaDeo]

I've just passed the 12 year mark, and seem to be doing fine. I was 52 at diagnosis though.

[Moon-shadow in reply to SofiaDeo]

Quite the traveler you are on this CLL journey SofiaDeo! Appreciate all that you do to educate us! Long may we run!

[SofiaDeo in reply to Moon-shadow]

haha there are others diagnosed longer than I! I wonder if most of the "third who never need treatment" may not even be on a support group. I know I didn't look for one until I started having problems mmm 6 years ago.

[Kiwi77]

Fantastic SofiaDeo 😀

[Fishtopher]

I was diagnosed in 2002 and still fine and healthy at 83.

[Kiwi77 in reply to Fishtopher]

Thats excellent 😀

[Newdawn Administrator]

I’ve had it 11 yrs (and probably longer undiagnosed) so hope your doctor’s crystal ball is off-track! 😄

Newdawn

[Kiwi77 in reply to Newdawn]

Me to Newdawn 😀

[KirbyBH]

I was diagnosed in 2005 and I was also told I had the "good" kind and could live 20 years with it. It is now 2023 and I am 81 years old. Only treatment I have had all these years is to see Doctor and get blood work. So hang in there and stay positive. They can tell if it is an aggressive type or not.

[Kiwi77 in reply to KirbyBH]

Thankyou KirbyBH 😀

[mdsp7]

I was 49 in 2008 when I was diagnosed and given a poor prognosis. 15 years later, I am still on watch and wait, and my blood tests are getting better, not worse. Take care of yourself and read and learn. I did make changes in how I lived my life, which may have helped. I am careful with infections. You can still enjoy a long life and have fun! Live long and prosper!