Was anyone else here diagnosed around the age of 40?

[Chewy5]

Diagnosed at 40, stage 4, not on treatment yet.

[Hidden]

look at related posts to the right of yours. you will see a bunch.

[elkk]

Welcome Chewy5!

Sorry to hear of your diagnosis so young.

Im sure you will this forum very informative and supportive, a great place to come for advice or to learn as much as you can.

I was diagnosed at age 49, currently on w&w.

Elkk au😀

[Chewy5 in reply to elkk]

Thank you. It’s actually my husband that was diagnosed. It was about a year and a half ago. He’s sick right now so I’m panicking. He had fever for 2 weeks. Today first day no fever but he is freaking out from the drenching night sweats and still doesn’t feel right.

[elkk in reply to Chewy5]

Im sorry to hear that your husband is unwell with a fever, If you haven't already I would definitely get this checked by his doctor, I can't offer any medical advice, he is lucky to have such a supportive wife.

Stay strong 💕

Elkk au

[Ironj]

47 by chance not symptoms. I’m stage 4 SLL. With SLL and cll just tells you where it’s located if you have any bone marrow involvement your stage 4. It’s my understanding the stage isn’t all that important. Mutation , Fish and CBC are what’s important along with how your felling symptomatic or not.

[Mako625]

Diagnosed at 43, treatment 4 months after diagnosis. Ibrutinib and Gazyva doing well. Make sure you find a specialist. We have a long time to manage this disease. Lots of treatment options available and most often are tailored to the type of CLL you have.

[Chewy5 in reply to Mako625]

Thank you. He has the best specialist out there. He’s stage 4, unmutated, del 13q. His doc says that when it’s time that he will go on Ibrutinib. My husband doesn’t want to do that because he hates taking pills due to side effects and will be on it the rest of his life. Maybe there are other options for him.

[AussieNeil Administrator in reply to Chewy5]

Given "he has the best specialist out there" and "he hates taking pills due to side effects and will be on it the rest of his life", if your husband is recommended to start treatment soon, I recommend he ask his specialist about time limited combination therapies, such as Acalabrutinib and Venetoclax, Ibrutinib and Venetoclax, Obinutuzumab and Venetoclax or similar. There are a few clinical trials now testing these very promising combinations, even in treatment naive patients.

Neil

[Farrpottery in reply to Chewy5]

Believe me if there’s no other option, the Ibrutinib is a life changer. In US FDA requires 2 failed chemo rounds to be eligible for Ibrutinib. My husband has CLL with p53?& 17 deletions.

He had 6 months chemo in 2013 then in ‘17 he had to try more chemo. Was unable to complete it. The only other option was Hospice.

Of course we took the Ibrutinib choice. My husband takes a low dose and living a good life now 24 months later. We are grateful and feel very blessed.

Farrpottery

[Chewy5 in reply to Farrpottery]

That’s great to hear. Thank you.

[Kuna123]

Diagnosed at the age of 37 with Sll. Right now I am on a trail at Stanford and feeling good. Still have occasional night sweats but not drenching. I hope your husband feels better soon.

[Chewy5 in reply to Kuna123]

Thank you

[TheFrog]

I was diagnosed with SLL (stage 4 with B symptoms) at 39 and needed treatment within 6 months. First remission lasted 11 years, I was treated again 2007/8 and am still in remission. It is almost 25 years since first diagnosis.

Jacques

[Chewy5 in reply to TheFrog]

That’s amazing!

[tomster in reply to TheFrog]

Hi Jacques, My I ask know what genetic parameters do you have? Maybe 13q- mutated?

[TheFrog in reply to tomster]

I don't know. When I was diagnosed in 1994 there was no genetic testing. When I relapsed in 2007 it was still not common in the UK. If I relapsed again I'd definitely be checked as we are now in the situation where these checks are carried out before treatment.

Jacques

[Chewy5 in reply to tomster]

13q unmutated

[pbaddi in reply to TheFrog]

That's amazing. Could you please share you daily routine and diet plan. It will be encouraging to lot of us.

[TheFrog in reply to pbaddi]

Nothing very interesting. Everything in moderation, very little processed food, lots of fruit. My wife would argue that the amount of exercise I take isn't in moderation. We have 2 Golden Retrieves so I get to walk them every day. I swim 2 or 3 times a week (except when neutropenic) and as an ex-competion swimmer that's not gentle paddling up and down. I also play squash 3 or 4 times per week which is pretty intense. I'm very lucky because I thoroughly enjoy the exercise so don't have to push myself to go and do it.

Jacques

[pbaddi in reply to TheFrog]

Thank you for your reply

[Deta1961]

Diagnosed at 40 with CLL .... it has been a long journey, but i’m here 18 years after, be strong!!!!

[Chewy5 in reply to Deta1961]

That’s amazing! Thank you! These replies are very encouraging.

[DisneyMom]

Diagnosed this year at 39. Looking at past blood work, I've actually had CLL for 3 years. No treatment yet, stage 2.

Carol 🇨🇦

[tomster]

I am 37. I was dx in January. 13q- mutated. St0. W&W. No treatment, no sympthoms🙏