Spleen enlarged

[Tross88]

In February 2017 I was diagnosed with CLL and am on watch and wait. WBC is about 66 and other numbers are fine. During a check up in November 2018 I was told my spleen has enlarged and was given a CT scan on 21st December. They have not contacted me so presume it's stable enough until next check up in March. My spleen is very hard and goes down past my lower rib and into the top of my stomach. I only feel the occasional slight pain if I lie to much on my left side and I am beginning to feel that I have to eat less food otherwise I feel full much quicker.

I know you will all say I should contact the doctor but was just wondering what people's opinion is - am I getting close to treatment.

[AussieNeil Partner Administrator]

Unexplained weight loss is one trigger for starting treatment and that can be due to a sufficiently enlarged spleen. Enlarged spleens are common in CLL - mine was found to be enlarged (tippable, i.e. protruding below the ribs) when I was diagnosed 10 years ago and I'm still in watch and wait...

[cajunjeff]

It’s hard to say with such limited information if you are nearing treatment. If you are truly experiencing weight loss because your spleen is pushing on your stomach, that would certainly be a factor your doctor might consider. Other factors include, but are not limited to, lymphocyte doubling in six months, platelets dropping below 100 and hemoglobin falling below 10.

The good news for you is that many of your treatment options, including ibrutinib, have the potential to quickly reduce your spleen. Mine got very large before treatment, after about 3 months on ibrutinb it shrunk back to where it’s no longer palpable. So yes, have a conversation with your doctor if your spleen is hurting you and is making you lose weight. Deciding when to treat is usually a judgement call, it’s generally good to hold off as long as possible to treat, but if your quality of life is truly suffering, I think most doctors would consider that an important factor to consider.

[W00dfin]

My WW ended in hospitalization for sepsis 2011. I had FCR inpatient. I had no diagnostic evaluation of my spleen but it had pushed into my stomach to the degree that I could only eat about half of my usual meal. Within 3-4 days after FCR my appetite returned completely as my spleen was back to normal. Best wishes!

[Tross88]

Thanks for replying to my post. My weight has yet to drop and I'm generally feeling fine. Will contact specialist nurse at the clinic for advice.

[moments]

I had a break from chemo for CLL in May 2018 at which time my spleen was so big my oncologist said 'don't hit it or let your grandchildren get rough around your stomach'. Whoa! In November I was put on Ibrutinib. One of the reasons for my saying yes to it was that it would shrink my spleen. Less than 2 months later Ibrutinib did just that. It did shrink my spleen.

[Quarry]

Spleen swelling, as Neil says, is common and could be from many causes (including the CLL). We also react differently (mine was 12x normal size before it was removed, but caused me no pain/discomfort).

One swelling cause is autoimmune haemolytic anaemia (AIHA, triggered by the CLL - from memory c7% of us get this complication) - if this is becoming a problem you will notice drop in HB and rise in LDH, bilirubin and reticulocytes (and your eye whites will yellow, urine will be yellow and your face will grey). This will need treatment if it gets serious, so keep and eye on these numbers.