I had an ultrasound today to be told my spleen is quite enlarged. I had no idea the spleen works with the lymph nodes in the stomach and supports the processing of blood cells in the body.
Has anyone else experienced this before (my latest blood results showed quite the increase in lymphocytes) so fear I may be referred back to the consultant (I’ve been on ‘watch and wait’ with the GP for the past year and a bit)
Any shared experiences would be greatly appreciated, thank you
Hi BigBrownB and welcome to our community. Given you've been living with CLL for a bit over a year under a GPs oversight, your consultant must have considered that your CLL was fairly indolent. Understandably now that your spleen has now been found to be enlarged and your lymphocyte count increasing, you are concerned about what's now happening with your CLL.
You've come to a good place to learn and you'll find some excellent posts you can use to improve your understanding of CLL in our pinned posts section here: healthunlocked.com/cllsuppo....
As you've recently learnt, your spleen is a specialised large lymph node. It has a very important function in filtering your blood, removing worn out red blood cells after they've been busy keeping your body cells fed with oxygen for around 100 days. The spleen also functions as an emergency supply of blood in the event of injury involving blood loss, plus it also can quickly supply large quantities of platelets and neutrophils, faster than our bone marrow can make them. CLL cells tend to sequester in lymph nodes (CLL is, after all the most commonly diagnosed Adult Non-Hodgkin's Lymphoma). So how enlarged your spleen becomes is used to determine the stage of your CLL. Unlike other cancers, staging in CLL doesn't have much of a relation with when you'll need treatment - it's better understood as a measure of how much CLL has impacted your body. For example, I was diagnosed at stage 4 CLL/SLL, primarily because my spleen was so large at diagnosis, it protruded a couple of centimetres (about an inch) below my rib cage. However, I didn't need treatment until 11 years later. Treatments quickly shrink your spleen back to normal and my spleen is still within the normal size range, over 4 years after I began treatment. I only found that out earlier this year, when my specialist arranged an ultrasound check of my spleen at my request, because with my variant of CLL/SLL, my CLL cells prefer to accumulate in my spleen, nodes and bone marrow rather than in my blood. (I was also surprised to find that ultrasound radiologists and CT scan radiologists report spleen size in different ways, so you can't compare the results, but what matters with CLL is how much it protrudes below the rib cage. Protruding more than 6cm is a trigger for starting treatment.
What your doctor and consultant will now need to determine, is how quickly your spleen and lymphocyte counts are growing and hence how often you'll need to be monitored through blood tests and checks for node and spleen growth, etc. Our pinned post on when to start treatment healthunlocked.com/cllsuppo... has plenty of detail on this, but briefly, it's whether your lymphocyte count is doubling in under 6 months after it is over 30, when your haemoglobin is below 100 or your platelet count is under 100 and continuing to trend down, plus a few other checks. If you have your flow cytometry tests at hand, being CD38 negative is generally associated with slow progression. In the UK, it's not usual to do further prognostic testing at diagnosis or during watch and wait, but you might have FISH test results. If you can find those and add them to your reply, we can provide you with a bit more of an idea on how long your watch and wait is likely to last. The best answer is determined by observing your trends in your haemoglobin, and platelet counts and your lymphocyte doubling time.
Neil
This is such a clear explanation, thank you Neil. I was onW&W 17 years. I have an enlarged speen which isn’t uncomfortable and my WBC is steadily rising (not doubling)
As I have mentioned before my specialist wants me to start treatment now (Calquence tablets). I do not understand the rush to treat me and am trying to delay it until I have symptoms. I feel quite pressured . Every person is unique with CLL and I don’t understand the rush . All my bloods are normal apart from platelets a little low. But both consultants I’ve seen agree it’s time to start so I know I have to accept it
My symptoms were not super bad when I started treatment. My doctors were concerned that the decline in my hemoglobin, platelets etc would accelerate and go off a cliff quickly and I would be in a bad spot. I took their advice and started treatment and feel a lot better.
Thank you for this
I had a huge spleen which gave me no real discomfort. What activated the treatment decision was a finding of CLL cells in my skin on investigation by dermatology for something else. My haematologist felt that things were beginning to deteriorate and we started O&V.
Thanks for this
How is the O&V going so far? I’m still trying to decide between that option and long term Calquence tablets . Did you have both options?
I finished the O&V two years ago. It was fine. I had the rash and some joint pain but I am in remission now. I was given both options. I'm glad I chose the one-off treatment rather than the ongoing daily pill as I take nothing now except a daily D3 pill. The latter will probably come when I need further treatment at some later date.
Thank you so much your comprehensive response.
As with anything new, it can be a bit scary when you don’t have all the information, but this has given me so much more knowledge. I’ll also feel more confident when I see my consultant.
Thank you again x
Hi ive had CLL for 15 years with no treatment but due to start soon. I spent 8 hours in hospital Monday night with terrible pain under ribs on left hand side..I had a feeling it may be my spleen as I know its enlarged. Had bloods done and ct scan...they thought I had a water infection but had no symptoms. The registrar said its my spleen and nothing they could do...sent me home after waiting 8 hours...said take regular paracetamol and if no better see gp about stronger pain killers. I've never had pain from it before. Take care
I hope you get sorted and the pain eases soon x
Thank you x
Neil as always has a comprehensive reply - I also think you should get to your consultant
Also worth keeping your eye on your red count. The spleen can be tricked by CLL into destroying healthy red cells (Auto-Immune Haemolytic Anaemia ), which also causes a swelling of the spleen (mine was well over 5x normal size before we took action). AIHA can be treated separately, though if your lymphocytes rocketing is might just be the CLL. A specialist consultant will understand all variations (a GP only sees a few CLL patients in their entire career, so really can not be expected to be up to speed on the many variations and treatments)
Good luck!
By the end of my WW my spleen was so enlarged that it pushed into my stomach. I could only eat a little before feeling full. It quickly returned to normal size after starting treatment.
Given your description, you are right to question moving to acalabrutinib. Watch and wait is still likely your best option.
Spleen and lymph nodes both can swell with accumulation of "bad" CLL cells in the blood; those systems are meant to screen your immune system for bad cells and remove them. But as your ALC count rises, they sometimes can't keep up and start to swell.
You have one spleen and a whole bunch of lymph nodes, and there's variation in CLL byproduct cells. So this swelling can begin in different ways. Some people have lymph node swelling noticeable to passersby. Some have spleen swelling. Some have both, some have neither.
Spleen swelling will likely cause significant discomfort before it becomes a serious medical issue. Your spleen has something like 4-6 cm of expansion room before it starts protruding below your ribcage, which in normal situations would protect your spleen from impact.
If your spleen takes a hard hit directly, it can lacerate. If swollen significantly it also can spontaneously lacerate due to pressure put on it while doing daily activities. This is painful. Worst case, it can rupture. This is bad.
The spleen can be removed, similar to your gall bladder. This used to be a near-frontline treatment for CLL, but statistics have shown that long-term immune system degradation outweighs the benefits of removing the spleen.
If your spleen continues to swell you will likely feel pain below your left ribcage, particularly when bending over or sneezing. It also can swell and impact your digestive system, resulting in acid reflux or feelings of fullness that lead to rapid weight loss. These are signs of impending medical issues and likely mean initiating CLL treatment.
Until then, though, watch and wait is OK.
More on this in the following thread - I waited a bit too long on this and ended up hospitalized for spleen lacerations. Treatment started immediately following this incident. healthunlocked.com/cllsuppo...
dear big brown, I also had a big spleen (categorised massive), and it was scryer talking on this page about his experience as it was happening that persuaded me to talk to my dr about treatment. When I had V@O my spleen symptoms disappeared within two weeks as it shrank. And it’s normal size now and I’m in clinical remission 🎉
I noticed I was very very tired with a large spleen, and I think at first that my spleen was very efficient at breaking down my bad lymphocytes. Then suddenly there was a stage where it suddenly decided it couldn’t, and white cells showed up more in my blood.
Don’t worry about treatment. The new agents are wonderful. They just shrink your spleen! I had been having so many symptoms that it made me feel so much better! Good luck!
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