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.""
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 😊
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… 🙏
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.
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!
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.
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".
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My 1 year CAR-T anniversary and from ASH 2018, Dr. Siddiqi on how CLL treatment has changed.
Dr Michael Keating's Story - Taking CLL Therapies From Bedside to Community
