10 Years in CLL: Top Advances From 2012-2022 - CLL Support

CLL Support

23,337 members40,043 posts

10 Years in CLL: Top Advances From 2012-2022

Yalokin profile image
14 Replies

For some of you, this is the story you witnessed.

For some of us, this is the near or more distant future.

Some American colleagues here must have had personal contacts with the authors of the article.

"Targeted therapies have brought about an increased life expectancy for many individuals with a CLL diagnosis. "In the past, the 'chronic' in CLL meant you could live 10 years," Davids said. "Today, the goal for many patients is to live out a normal life span and not die from CLL.""

More here: targetedonc.com/view/10-yea...

Written by
Yalokin profile image
Yalokin
To view profiles and participate in discussions please or .
14 Replies
Newdawn profile image
NewdawnAdministrator

I seem to recall this very promising article being posted on here previously because having been dx in 2012 and thankfully uMRD by 2022, it resonated with me 😊

A reassuring read.

Newdawn

Yalokin profile image
Yalokin in reply toNewdawn

Probably other "resonators" will call. It is possible.

Greetings!

🤠

CLLerinOz profile image
CLLerinOzAdministrator in reply toNewdawn

You're right; it was. Here's that post and discussion: healthunlocked.com/cllsuppo...

Yalokin profile image
Yalokin in reply toCLLerinOz

Yes, thanks. There were no search results because the titles are different. Should I delete this post or keep it?

CLLerinOz profile image
CLLerinOzAdministrator in reply toYalokin

That’s ok. Keep it. It’s good news 😀

Yalokin profile image
Yalokin in reply toCLLerinOz

👍

Edalv profile image
Edalv in reply toYalokin

Thanks for posting the article, I must have missed it the first time around. I am sure there others like me that read it for the first time today. I wouldn’t delete it… 🙏

Yalokin profile image
Yalokin in reply toEdalv

👍

Jetliz profile image
Jetliz

Thanks YalokinBecause I'm W&W I've never ventured into looking at all the treatment side of CLL even though I knew medication has improved so much. It's really given me a boost to actually read the real effectiveness for the first time of all the different drugs. When I see posts about treatment it overwhelms me but this has made me read it with clarity and positivity for the first time so I've saved the post thank you again.

Lawand1 profile image
Lawand1

I am living testimony to this!

Pin57 profile image
Pin57

Great article Yalokin, thank you for posting. Very uplifting it is to read the history of and the awesome medical progress/drugs that effectively fight CLL.

Because of the great treatments we CLLers have available now, I’d trade my cancer with my wife’s incurable cancer in a heartbeat… if only I could, I would!

On a cancer spectrum … (of course no one wants to have any type of cancer)… but if I had to pick one, CLL likely would be it as crazy as that might sound. I heavily reflect this morning, having read your posted article n personally knowing there are waaaaay more hellish cancers out there, wo great treatments available like we have, and I’m numbed knowing that.

But again thanks for a reminder of all the great progress for us CLLers. We are fortunate for that progress!

Fran57 profile image
Fran57

Thanks Yalokin.Stay safe,

Fran 😷

Vakraas profile image
Vakraas

I've seen these changes in approach reflected by my different haematologists in different countries since I was first diagnosed with CLL in January 2006. When I was first diagnosed in Melbourne, Australia (at the age of only 37), the diagnosis was treated as something of a slow-motion death sentence, and instead of being referred to a haematology specialist, I was referred to a palliative care specialist with a sideline in haematology. All the messaging and mood music was about life expectancy and the lack of guarantees. For someone in their late 30s, that was all difficult to absorb.

Now, it could just be that I was initially referred badly, of course, but since returning to the UK for work in 2007, in the 15 years I've been with Dr Follows at Cambridge, I've noticed the messaging becoming gradually more encouraging over time, with much more of a focus building on 'new therapies' and 'living a normal life' for "young" (still only 53!) CLL patients like myself should treatment eventually become necessary.

It's possible that some of that mood music is specific to a relatively young CLL patient with a highly stable (touch wood) WBC count who's been on W&W for an extended period of time - I know many of us aren't so lucky - but it doesn't seem to be just that. It does also seem to be down to a significant change in overall approach and messaging.

Yalokin profile image
Yalokin in reply toVakraas

Wow, So young with our diagnosis. Maybe you got lucky though. I feel a bit like you did in the beginning. I have no idea how this disease is treated in our country. About 85 men get CLL in our country every year ( for comparison, 65 get breast cancer). Well, of course, there are also women - around 65. These are so few cases that it is heresy in our country to talk about a CLL specialist who deals only with such cases. The 5-year-old survival is exactly half of the USA (compared to 2016).

But fate is stronger than us. As I like to say, "Life is joy and sadness".

Greetings!

Not what you're looking for?

You may also like...

Patient Power CLL & Fatigue 2022-10-19.

Fatigue is a side effect shared by just about every patient with chronic lymphocytic leukemia...
lankisterguy profile image
Volunteer

Unmutated been WW 10 years

A good-ish story: I have unmutated CLL, diagnosed 10 years ago when I was 52. I upturned my life...
debralynn profile image

10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy

I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have...
lankisterguy profile image
Volunteer

Diagnosed at 33 with cll and have discovered I've had it from early 20's

Hi, I have just been diagnosed with cll at the age of 33 and they said that they had got some of...

Can anyone recommend a CLL expert MD preferably in North Central WI or nearby

I live in North Central Wisconsin (Marathon county) USA about 2 hours drive directly North of the...
Bobsterguy profile image

Moderation team

See all
AussieNeil profile image
AussieNeilAdministrator
Newdawn profile image
NewdawnAdministrator
CLLerinOz profile image
CLLerinOzAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.