I am new to the post and to CLL

[JoeStash]

I am new here.I was Just diagnosed have CLL in Dec of 2018. I am trying to learn all I can about CLL.

[AussieNeil Partner Administrator]

Welcome to our supportive community Joe! While you are waiting for other welcoming replies, check out our Pinned Posts section here: healthunlocked.com/cllsuppo...

The "Things we can do to improve our journey..." post is full of our community's collected wisdom.

Neil

[PlanetaryKim]

Welcome Jo. I was diagnosed in 2016. First treated in 2017 with Ibrutinb. feel free to ask any question of us as you go along.

kim

[Searchlight]

Hi Joe, I was diagnosed in December 2015, I’m a woman and am 58 now. The hospital discovered my CLL was ‘unmutated’ last summer - they didn’t test for this originally. But they don’t routinely test for this upon diagnosis in the UK - a cost issue, of course. Apparently if they had done, they would have been able to tell us at the outset it would all kick off within a few years. Instead, we were given confusing messages.

In brief, I was 2 years and 9 months on ‘watch and wait’ and then began treatment. I had the opportunity to go on the FLAIR trial - available actress the UK, I believe, to anyone previously untreated, if you meet the trial criteria. I was fortunate enough to be randomised to the I&V (Ibrutinib Venetoclax arm).

Much to tell. I’m working round to starting a blog account. But, bottom line, it’s all positive - haven’t felt anything I’d describe as illness or discomfort at all, been through the winter with no colds or infections and I haven’t had to miss a day’s work. My massively swollen lymph nodes collapsed and disappeared within a month or two (but noticeably started shrinking within days!) Been on Ibrutinib for nearly 5 months and both drugs since mid January.

Good luck yourself. I’d say read all you can, listen to as much as you can. There are great resources on the internet - great You Tube videos. Patient Power in the States is a particularly good source of these. I particularly follow the CAPTIVATE trial in the States, and the latest findings at the ASH and ASCRO conferences.

[Panz]

Welcome, Joe! So very happy you found us. We are all here for each other and we all learn from each other. This isn’t the death sentence it one was....there is a lot of help available. I have had CLL for 30+ years and am jut two weeks short of being in Imbruvica 420 and have never felt better. All the best as you continue your journey. Positive attitude, healthy diet and be your own advocate!!! 😍💕☘️🙏

[Anilbhard]

Welcome and just relax from my personal Experience.

I was diagnosed accidentally with CLL B-cell ,in 2001 — yes 2001- and was put on W & W till Jan 2003 when they started FC chemo. It was having mild after effects as compared to other chemo drugs.

Thereafter I was free from all Lymph Nodes till June 2012 . Thereafter they gave me BR etc and finally since Jan 2017 I am on Ibnutrib and now all my parameters like TLC , Lymphocytes, Hb , Platelets are in complete control .

In short , nothing to panic about as I am now 64 years and barring having low immunity ( for which I was given IgG Inj) which is affecting my lungs and had thrice pneumonia in 2017 . Otherwise I am feeling better now.

Surely each individual cases or experiences are different , depending on various factors, but in short : Don’t worry

[Hoffy]

You’re on the right track learn what you can. Make sure to get a second opinion from a CLL specialist before any treatment 30% of people never need treatment and for the most part treatment does not have to be done quickly unless you have a certain acute conditions.

CLLSociety.org> is a very helpful site. Patient power as well.

Fortunately there are many new targeted non-chemotherapy’s now that have been very effective especially as combos. That is what I have had see my posts and history .

Be well,

Hoffy