I was told the CLL diagnosis between Christmas and New Year in 2012, so I have just passed the 10th year. After a tricky first year with AIHA (and I was worried the end was close at one stage), I had a splenectomy in Jan 2013 to stop the AIHA. Since then I have had no sign of haemolysis/AIHA. Long may that continue!
And as a bonus, my bloods have surely but steadily improved each 6 months, so much so that unless I am mistaken, my lymphocytes are just back into 'normal' person range.
Despite the pressures on the NHS, my CLL Consultant and her clinical nurse have been brilliant throughout. I can't thank them enough
I hope (despite what is going on in the world) you all have a good New Year and thanks for your support, which has been invaluable
Written by
Quarry
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Hello Quarry, I remember your name from when I first came to this website. I am so glad you have had a good outcome. I was also dx 10 years ago and thought I had AIHA but didn't. I am on my second treatment but feeling well. My biggest issue is trying to be with family and not ending up sick!
No lifestyle modifications - though I am pretty active anyway, sort of normal weight and eat relatively health food. I did change jobs to avoid a big commute, but that was so I could have more time with kids before the worst case scenario happened (which mercifully it has not) - not sure that was more of less stressful!!
That's an encouraging result and if you are IGHV mutated, it's possible you may now never need treatment for your CLL. Splenectomies were recommended for CLL treatment back in the 90s, before we had FC treatment, which eventually became the gold standard FCR treatment. Splenectomies were done at Mayo Clinic and M D Anderson after a mouse model predicted improved life expectancies, with this prediction subsequently confirmed in people. Quite a few CLL patients had remissions of their CLL! pubmed.ncbi.nlm.nih.gov/380...
Thanks - of course as in UK and not needing CLL treatment, I have no idea on mutation status as this is only done when treatment needed.
Splenectomy was done to solely with aim to stop AIHA (as steroids had failed to) - at the time my consultant told me it was to avoid using CLL treatments solely for AHIA and so to save them for when I needed them for CLL treatment / that long-term use would prompt other side-effects (and being 'young' I might be on them for a very long time) - of course that was 9 years ago and things have moved on a lot. But the implication of her words were CLL would develop.
As far as I know, my bloods will be still monitored every 6 months, which I am happy about
Interesting papers, which I did not find 9 years ago! Probably because I was looking for splenectomy/AIHA link, not CLL. And very relieved surgery/anasethics have improved so much from the early 80s (14 days mean for hospital....) - from memory I was in hospital 2 or 3 days and back at work in 14. (even though I am convinced the surgeon did not look at scans and so tried keyhole for 2 hours before he gave up and opened me up to take out the 2.5kg spleen!)
That is very interesting and the more I think about it the more I like the idea of a splenectomy.
So happy you have made it ... ten years ..Happy New year....I am in my 11 year and I sure do understand that scary moment when you get a real bad Blood report and all the sudden you get real sick I just had this happen to me I thought it was the end for me also thanking God and this Group for being here cause everyone understands and no one else understands..so we come to this group..to share our life's ..and feelings and get to ask Questions And in return we get understanding...
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