Hello to everyone, back in Nov.2024 I was diagnosed with CLL . I have gone through a series of treatments being 4 treatments once a week via IV two times now. However in between these treatments my numbers dropped right back down. So my Oncologist is thinking about doing a Splenectomy. I have researched this and am having a hard time trying to decide if I want to go through with this. Is there anyone on this forum that has gone through this. I want to know about the recovery and what you may have to deal with after the surgery. I really would appreciate any help you can give me. God bless
Hi grace 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 journey so far.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL) but 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 - Not Otherwise Specified 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.
My spleen actually stopped working just after my treatments were completed so it’s now taking up room in my body but I have talked with others especially with Lymphoma who have had a Splenectomy with no aftereffects.
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.
Are you in the UK? ……. if you are you may want to 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….. a number having had a Splenectomy
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 from across the big Loch……. being in the Highlands of Scotland we done do ponds.
Ok so Lymphoma Action is a great source of information but as you are not in the UK their support platforms are not available to you.
You can put Splenectomy into the search tool 
near the top and this brings up all the posts about this in the site so the answers could well relate to other cancers but worth a look through.
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story)…… but my treatment actually developed A-Fib in 2015 eventually resulting in a heart attack in April 2022.
Lets look for you to find the best way forward in this.
Always around to chat ((hugs))
