Just about to start treatment

Hi Smedley 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 CLL, SLL or HCL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

What of the three types do you have?

Ibrutinib is widely used (although I had a completely different treatment) so let’s look for any group member to pick up on your post and give you their experiences.

 You can also put Ibrutinib into the search tool  near the top and see the older posts.

Many thanks.

i have been diagnosed with SLL.
i will search as suggested.

thank you 

I've known I have CLL for some years and been on watch and wait. It was in remission.then in May I had COVID and it upset everything. The after effects have not completely disappeared but I have been informed CLL has gone back into remission. I am relieved but concerned as I haven't returned to where I was health wise yet.

Tests are now starting for Colon problems just as I could see the end to hospital's and medical specialists.

The diabetes is almost back under sort of control and the heart is behaving. Arthritis is a problem some days but I'm alive able to get out and I try to keep busy.

I'm lucky each day I wake up to a new dawn . Keep going ignore the issues as much as possible and enjoy each day.

Good morning Smedley and thank you for this...... sorry for the delay in getting back to you but I tested Covid + on Friday so have been fighting the massive headache but I am fine this morning.

This may sound very left field but do check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos (all the links in my post are taken from their site)

Although SLL and indeed CLL have 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.

Lymphoma Action run regular Support Platforms both for patients but also for family and carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey and I have a few folks in the group I run with SLL and CLL.

They also have a great Lymphoma Action Buddy Service where your wife but also you can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma 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.

Thank you Mike

this is so helpful. All so new.

i am female (sarah) btw. Luckily my husband is a counsellor and has a lot of good support around hime but of course not CLL SLL specific

i will check out the links you ha e suggested

Good to hear that he is good support around him....... just make sure you connect into the support that is available as the journey can be full of twists and turns and those who have walked the walk alongside their family understand.