Hello

Hi Revels and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

Well you beat me on being on Active Monitoring (Watch and Wait)...... I was 14 years before I needed full on treatment.

Have you been told what treatment you are going to be having?

This link Top Tips for the day of your Chemotherapy is taken from the Lymphoma Action website (yes CLL is seen to be the same as a Low Grade Non Hodgkin's Lymphoma..... yes very complicated)

Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc

Always around to help more or just to chat

Thanks Mike 

Currently they need to get rid of my chest infection and I am only on antidbody infusions along with antibitics at present , but looks like it could be either FCR or Venetoclex sometime next year 

I have only just been told so trying some research about side affects etc and if anyone has had either of the above treatments for CLL then will be interested in hearing how it all went or if they too are awaiting treatement

Thanks again Mike for the welcome 

Kev 

Hi again Kev Revels, we could line up 100 people on the same treatment and get 100 totally different types of journey but this link helps unpack this subject Side Effects of Treatments.

I had a very aggressive treatment (see the link below) and honestly I did ok and never experienced any of the horror stories I had read about.

You can use the site search  tool near the top and put in FCR and Venetoclex into the tool and have a look at the older posts and as always you can hit reply.