Hi everyone,
I have just been diagnosed with CLL. I’m 38 and have two kids (8&2) and a great supportive husband. I am struggling to process everything at the moment and awaiting staging information from a recent bone marrow biopsy and CT scan I had this week.
My lympnodes have been enlarged for a few months and I have constant itching over my whole body (night sweats, fatigue etc) which is how they diagnosed as the doc decided to run bloods
Weird thing is my dad who is 69 was diagnosed with the same thing in December 22. He was very very unwell but responding really well to treatment (I am so proud of him).
I am trying to remain super positive but finding it hard as the negative thoughts are slipping in.
I am glad to have joined this group as reading some of your positive stories is really helping.
Thanks so much
Sarah
Hi Sarah BeingMeMo 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 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.
Although CLL has the word leukaemia in it it is actually seen in the same light as many Low-grade non-Hodgkin lymphoma as these types of blood cancers are slow growing.
As you may already know though your dad’s journey Staging in blood cancers like these is rather unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in these blood cancers it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.
Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.
You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
They run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
Always around to help more or just to chat
