I'm 70 and was diagnosed with CLL about 18 months ago. I have been on watch and wait since being diagnosed, whilst also being treated separately for prostate issues. Having just finished a month's radiotherapy for prostate cancer, I now have a meeting in a couple of weeks with my haematologist to review my CLL. She was suggesting at my last meeting that we might need to start treatment for enlarged lymph nodes, although they are not painful and my bloods are stable at the moment.
I'm naturally worried, not knowing what future treatment entails, and I wondered what treatments others have had when their lymph nodes have enlarged.
My moods fluctuate regularly between optimism and depression, particularly as I realise it will soon be two years since CLL was diagnosed, and I get scared by life expectancy statistics etc.
Any reassurances would be gratefully received.
Hi Parkrunner and a warm welcome to this corner of the Community although I am sorry to hear about your CLL diagnosis.
I am Mike and I help out around our various Blood Cancer groups.
I don’t have Chronic lymphocytic leukaemia (CLL) but I understand this journey rather well as I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable, slow growing but treatable type of Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL)…… eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges.
Although CLL has the word ‘Leukaemia’ in it, in Heamatology terms it actually comes under the umbrella of a Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This is why CLL, SLL and HCL have a group on their own away from the main Leukaemia groups.
There are a number of active members in the group at the moment so let’s look for them to pick up on your post and as always you can look through the older posts and hit reply if you want to ask anyone a question about their journey.
I would also recommend you also check out Lymphoma Action.
Lymphoma Action is the only UK Lymphoma, CLL, SLL and HCL Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment.
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.
They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
I am always around to help more, just to chat and to answer questions.
