Hi. Re Chronic lymphocytic leukaemia ('CLL'). For the last few days I have had some pain, a little like stitch, left side below ribs. I haven’t slept well all this year - first hubby was ill then he passed away mid January so this could be a result of lack of sleep. I deduce this is where my spleen is. It has been marginally enlarged in regular MRIs for my ataxia. I’ve not had any increase in lymphomas (just a small pea sized maxillary for some time) and recent blood tests seem to show white blood cells etc actually decreasing though I know that isn’t the whole story. My last specialist appointment in January was rather a blur as my husband was then in the hospice on the same site and my thoughts were more about him. GP’s are rarely very helpful; I see my neurologist in London on Friday and don’t want to miss that as he is so thorough. My haematology specialist is more local and seems very good. My daughter came over from the US to support and help me and she is due to return on 17th March. I don’t want to needlessly start a panic as she should get back to her family - she will have been over here 4 weeks working US hours due to an understanding employer. Any advice or recommendations welcome!
Hi @nelletap
I’m sorry to read about your challenges right now.
I was diagnosed with Myelofibrosis in October 2023.
I hadn’t even realised my spleen had enlarged when I went in to see GP. Tests showed it 2.5 times the size it should be
I’m not a doctor but would definitely recommend you flag this change to your Haematologist ASAP
Hope that helps
Hi @nelletap, and thank you for sharing - what a great deal you are carrying at the moment. I’m so sorry about the loss of your husband. I can’t imagine how devastating that must be for you and your family.
On the pain you’re describing - as you know, CLL can indeed cause swelling in the spleen, and that your instinct to flag it is a good one, especially as this is a new pain. I’d encourage you not to wait for your next scheduled appointment with your haematologist - a phone call or message as soon as possible to let them know about the pain would be a very sensible step.
They can advise whether they’d like to see you sooner. It doesn’t have to mean derailing your neurologist appointment on Friday or alarming your daughter - it’s simply keeping your team informed, which is what watch and wait is built around.
Our Support Line nurses are also available if you’d find it helpful to talk to them - they’re on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
I hope Friday’s neurology appointment goes well, and do keep us posted.
Take care,
Ceri – Blood Cancer UK Support Services
This gave me some comfort as I don’t think mine can be that enlarged as it was only about 10% bigger in October. Perhaps I just sprained something. I phoned the haematology nurses and they will pass on to my specialist.
Hi @nelletap
I’m sorry to hear that things have been so hard the last few months. It must be emotionally and physically exhausting. It sounds like your daughter has been a great support to you.
I’m sure all of this impacts all aspects of your sleep and general heath. However, I’m glad you contacted your team. It’s always good to get these things checked out.
Please keep us updated on how you are doing.
Nichola X