Living with CLL

[2gizzy]

I was diagnosed with CLL in 2006 by a surgeon following an operation he said there something wrong with you blood and referred me to the haematology depart, they did test and confirm I had CLL but zi didn’t need treatment at that time. I had to go every 3 months for check up and in Jan 2010 I was told I needed treatment. I had 6 months of chemo, and at my next check up I was told one of the chemicals had destroyed my immune system and I would need treatment so since then I have been going every 4weeks for my immune booster. In 2018 I need further treat for my CLL and was given Ibrutinib, I had a sever reaction to it and had to stop after 2 months, after a couple of months I was started in Bendamustin mane again a had a reaction a rash that covered my whole body so I had to stop that, but it had worked and reduced the CLL. So I was fine until November 2019 when I started on Venetoclax, I have been taking 400mg everyday, my CLL under cntrol and I not having side effects. I’m lucky that I was diagnosed early and the CLL hadn’t gone into my lymph nodes. I thankful for the Consultant who has looked after throughout this I’m trying live my life to the full.

[Superdad3]

2gizzy,Sounds like you have been managing your Cll for quite some time. It’s amazing the changes in treatments and the various options available that keep emerging. Having a good doctor and for those of us that can be monitored by a Cll Specialist is so important. Thanks for sharing your story.

[cajunjeff]

2gizzy, great to read you are doing well.

Cll is not like other cancers where it is important that it get diagnosed early or that it spreading to the lymph nodes is a really bad sign.

Cll is by definition a lymphoma and it’s almost certain you had some Cll involvement with your lymph nodes when you started treating. Many people on this site have had Cll cells in their lymph glands for years and have not begun treatment.

It’s one of the really counterintuitive things about Cll. Catching it early typically has no impact on outcome with Cll since we wait until the last minute to treat anyway. Catching almost any other type cancer early before it spread is usually critical to survival.

What is important for you is your doctor has found a treatment that is working for you and that’s great news.

[LeoPa]

You've been through a lot. Let's hope V works well for you. Good luck!