Hello from Nova Scotia

[CountryHarbour]

Hey I often wonder if it's beneficial to only be 57 when diagnosed..I'll be 59 in March ..I read that CLL usually afflicts elderly people..had more blood work done last week..was feeling short of breath and pressure in my mid section last few weeks..seems fine now ..so strange how I get this symptoms but then subside ..was super fatigued too but that also seems to of subsided ..happy summer everyone..my fav time of year

[AussieNeil Partner Administrator]

According to the US SEER data seer.cancer.gov/statfacts/h... 10.1% of those of us in the USA are diagnosed under the age of 55 and 35.7% under the age of 65. The stats probably aren't much different elsewhere in the western world. I was diagnosed at 53 with stage 4 SLL, so had obviously had CLL/SLL for maybe up to a decade previously, given the onset of fatigue, etc. Encouragingly, the survival statistics you find on-line are out of date, because we are living much longer with targeted therapies, so it's taking a decade or more for updates

Neil

[DoriZett]

I was diagnosed at 53, treated at 55 for 5 years with Acalabrutinib/Calquence monotherapy, and now approaching 3 years in partial remission and holding. Wish you the best - should it be time to start treatment soon. We are very fortunate to have the treatment options we have today. Onward!

[Fowey2009]

My husband was diagnosed at 56, 11years ago. He also thought he had CLL for several years before.

As others have said the new treatments have been a game changer for CLL and we are so grateful to the researchers and also to this community.

Best wishes to you.

Beryl

[EmilyLondon]

An advantage of being diagnosed early, ideally at an early stage of CLL, is that you can get more support in managing and preventing infections. See the posts here about getting vaccinations against pneumonia and other infections.

I have certainly found that my fatigue levels are very closely linked to frequent infections and infections that don't clear.

[Vakraas]

I was diagnosed back in January 2005 - just short of my 36th birthday (or was it 2006, just short of my 37th birthday? Odd that I can't remember the precise year without checking - point still holds, though). I'm now 55, still here, still active, still on W&W and not really planning on changing any of that (except my age, which I obviously can't control).

[LeoPa]

I was also diagnosed at 53. Now approaching 58 and so far so good on W&W.

[lednar]

I was 54 when first diagnosed, but was on watch & wait for the next 14 years. During that time the only thing that was different in how I was feeling was some fatigue. Other than that, it was smooth sailing. I've been receiving treatments now for 3 months and I remain hopeful that this will be brought under control. It's all a numbers game when you get right down to it.

[Hidden]

I am 54 and I did read that it mainly affects people 65-70 yrs old. I am glad you are feeling better now. I have been very fatigued and brain fog which is why I went to the doctor in the first place. I ended up with this diagnosis.. I still have brain fog and fatigue. Guess we will get to that eventually. I pray you keep feeling better!

[JoannG]

I was diagnosed at 48 and will be turning 70 this year. Effective treatment options are constantly changing and evolving. Just make sure to look after yourself.

[HopeME]

Hi

I was diagnosed seven years ago at 55 and I clearly had the disease for some period prior to that. So I have some good perspective on your question: Is it beneficial to be diagnosed earlier?

The answer is variable, much like everything else with CLL. On one hand, you are younger and more able to withstand treatment as presumably a younger patient is healthier than an older patient. On the other hand, the expected lifespan of a male 58 years old is about another 20 years so depending on markers getting to that age may be a challenge as there are only so many treatments available today. Fortunately, there is a tremendous amount of research occurring that should yield more novel agents over the next ten years and perhaps equally as important, the medical community is rapidly learning how to best utilize current novel drugs with respect to sequencing and combinations. So your “runway” should lengthen.

None of the above are controllable but there are a some things that are. The first is vaccinations. Get up to date on these as soon as possible as your immune system will degrade as you age and your disease progresses.

The second controllable factor is access to a specialist. It makes a big difference if you can get to a specialist at a major teaching hospital. I’m not sure how much flexibility there is in Canada but please explore your ability to be seen by a specialist.

The next controllable factor is knowledge. You have done a good job of expanding your personal knowledge by finding this site. Spend some time on the pinned posts as there is a lot of valuable information there. The second part of knowledge is prognostic testing. Are you unmutated or mutated, for example. The challenge with prognostic testing is it isn’t always available depending on location and the healthcare system in a particular country. Further some patients prefer not to know their personal outlook. This is a personal decision and is highly variable amongst patients .

Good luck with your journey. The ability to successfully manage CLL is expanding. If you had been diagnosed twenty years ago the outlook wouldn’t have been nearly as positive.

Best,

Mark

[joed1rt]

I was diagnosed at 43 and probably had it for 4 years before that. I'm now 54 and still on W&W. My WBC is half of what it was 12 years ago. Other stats are still all normal. Experiencing a bit more fatigue but that might just be me getting older. Wishing you a long W&W.