Hello from rural Kent

Hi Rob B and a warm welcome to this corner of the Community although I am sorry to see folks joining us and sorry to hear about your CLL diagnosis....... and a Hello from the beautiful Highlands of Scotland.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL) ........ trained as a Joiner making bespoke joinery for construction projects, went on to teach the skills for 20 year then retired and enjoy the freedom of the Highlands.

For some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

There are a number of active members on the group at the moment so let’s look for them to pick up on your post.

Although CLL it has the word Leukaemia in it, in Heamatology terms it actually comes under the umbrella of 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.

Do check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma 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.

Hi again Highlander,

from what I understand from both my consultant and GP you are correct in stating that CLL tends to be a "slow burner" often requiring no treatment. However, my prognosis told another story. Apparently, it is fairly uncommon to have CLL with a mutated TP53 gene, the tumour suppressor and general regulator of cancer cells in the body. This could mean that my CLL is likely to be more aggressive and with more chance of developing secondary cancers. I've been told that chemo can't be used in my case and that targeted therapy will if required if needed. The general outlook isn't great, but hey I'm still very much in the game...

All the best

Rob

Hi Rob….. safe to say that each individual story/journey will have its specific challenges…….

My journey (See my story) has had it’s fare share of twists and turns…… back in Oct 2015 I was told that the treatment plan that was going to be implemented was a last roll of the dice, but here I am 9+ years out from my last treatment.

I turn 70 at the end of the year and am continuing to like a great life.…… and over these past 9 years a few new treatments have found their way into the toolbox so it lets me like I have a fall back if required.

All the very best.

Thank you for the encouragement Mike, I’m rather hoping that I can win or at least give any future battles the same fighting spirit as you have to prolong the life I have and love… keep the faith and keep on fighting …is the only way…

Best

Rob