I was formally diagnosed in January 2024 with CLL and put on a watch and wait. I was informed it was stage 0. My next appointment is in 3 weeks to review my blood again. Due to some tummy problems my doc sent me for an ultrasound, where it was noted that my spleen is 16cm (enlarged).
If I understand the staging correctly, this takes me from 0 to 2 or 3 depending on the results of my next labs?
My question is for others who are or were on watch and wait protocol… has anyone been on W/W and had an enlarged spleen and remained on W’W? Do spleens typically enlarge quickly, or is it a slow progression?
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BC-CLLguy
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Always keep in mind that CLL is a very heterogeneous disease. I was diagnosed at stage 4, due an enlarged spleen that protruded a few centimetres below my rib cage and cytopentias. I subsequently remained in watch and wait for 11 years before needing treatment.
I was dx with CLL in 2008 and the start of an enlarged spleen in 2011. It slowly continued to enlarge till 2023 when I started treatment. It measured 19 cm by then. Luckily it grew lengthwise so it never interfered with eating and weight loss. But it was a deciding factor for treatment besides low platelets and hemaglobin. Since starting treatment last June it is back under the ribcage, normal size, where it belongs and all other bloods in normal range.
Staging... a swollen spleen (splenomegaly) is indicative of progression, but treatment decisions are not generally made based on staging. I wouldn't worry about it overmuch.
CLL tends to generate a lot of goop that piles up in your systems. Some people get massive spleen swelling, some get none. Some people get lymph swelling, some don't. Some people don't get a lot of swelling but have other blood dysfunction like anemia or thrombocytopenia (low platelets). The mechanism of bone marrow breakdown that CLL creates can present differently.
That having been said, a swollen spleen and eventual spleen damage is what triggered treatment for me. A little swelling is not a problem, and 16cm is generally OK although noticeable. The thing to watch for is when it swells below your ribcage. At that point you will likely experience some persistent pain below your left ribcage and start to feel it more when coughing or sneezing. Changes in appetite can occur as the spleen pressures your digestive system.
That, by itself, won't trigger treatment, but it is a signal it will likely start soon.
A massively enlarged spleen (>>20cm, depending on your overall size) can cause problems like lacerations and, worst case, rupture. You don't want to rupture your spleen. Like an appendix, it can cause other problems rapidly if that happens. The spleen can be removed, and they used to do that more proactively with CLL, but studies have shown that this increases long-term odds of serious infections and that's not a good idea for immunocompromised CLLers. Odds are when your spleen gets to that point - and certainly if you experience physical damage - you will move to treatment quickly.
Good news is treatment these days can rapidly address the buildup in your spleen and get you back to more normal function. There are also short-term fixes like steroids that can temporarily reduce swelling if need be.
I went from 16cm to 26 cm in a matter of months. My CLL progression however was much faster than the usual. Am now in clinical trial and it's going OK, and my spleen is mostly back to normal, just some occasional tenderness/soreness from scarring and related pleurisy.
You could well have had CLL for several years before diagnose as indicated by spleen growth. I did not for example have CLL 5 months before diagnosing and went from WBC 10K to 200+K in 14 months where I started treatment. I never had any spleen enlargement. Blessings.
Hi Big_Dee. My bloodwork from January 2023 was all on normal ranges. The first sign was in November 2023 when the markers appeared. But I get your point.
I've had a number of treatments. I've only had a massively enlarged spleen once, after a clinical trial drug first worked then stopped. I lost 10 lbs rapidly, and I looked like I was pregnant. I tried a different treatment within a few months, that worked. I am out of remission again, but my spleen is not enlarged at all right now.
Hello Sofia, I’m starting treatment next week and have had a massively enlarged spleen and liver for a long time, spleen is 21 cm and liver about the same, it goes down to the belly button and hip bone. I can feel them with my hands and have a lot of pain and discomfort but despite having lost more than 10 kilos I’ve never been able to see any of them protrude and I’m down to 47 kilos now.
Makes me wonder if they can grow in different ways, like some who are pregnant and it’s hardly visible while for others three months pregnant and one looks eight months. That’s definitely how I looked while carrying children, turned into a walrus very early on.
May I ask, what treatment you are starting? FWIW my specialist said he recommends all his venetoclax patients with huge spleens (mine was I think 24cm?) get treated as "high risk". And I also would recommend Not starting anything on Thursday or Friday; if you have an unexpected massive die-off of CLL in the spleen, better not to deal with that over the weekend. It seems, sometimes the cells in the spleen simply get pushed out into the blood, but sometimes they can just start dying immediately.
Four years into a CLL/SLL diagnosis and while on watch and wait. My spleen started growing enough to cause problems. Treatment triggering weight loss as I could not eat much at all. Left side pain that kept me from being very active. Now mind you, I am 6' 5" and at treatment decision time my spleen was 15.5 cm. Which is pretty small compared to many here. The last year prior to treatment my symptoms were really accelerating. Yet my CBC numbers by themselves would not have called for treatment.
Heterogeneous as it is, broadly 2 presentations of CLL:CLL - gradually increasing tumour lymphocyte numbers
rarer SLL - as above, but hiding in lymphatic system such that blood count doesn't reflect stage of disease, until lymphatics 'overflow'
Your situation has me think sounds like SLL, maybe, with spleen as sign.
My spleen gave pain as it enlarged over my ribs, until I couldn't be comfy in any sleep position.. developed back ache.. then it expanded that bit further and no longer got pinched by my ribcage and sleep comfort returned!
An experienced haematologist might more likely spot the signs, though without a scan some enlarged nodes won't be obvious.
Main thing is to self-advocate, to reduce risk of infections generally; CLL presents as a lifelong immune dysfunction..
Some health folk think patients are only immune deficient during cancer treatment - we are an exception.
My next oncology appointment is on April 23. I’ll see what he says with all this new info. Appreciate the insight. I will have my bloodwork online before I see him. I am very curious…and hopeful it hasn’t escalated.
I have a month long trip booked to Europe in May/June …I also want to make sure I won’t have any spleen l CLL or SLL surprises over there. I am assuming based on all the comments that things usually don’t go sideways that quickly with this disease.
I was on WW from 2003 to 2011. My spleen size had not been monitored. I only know that by the time I received treatment (FCR) my spleen was pressing against my stomach to the degree that I could only eat about half a meal. Within 1-2 days after the first treatment my spleen shrank and my appetite returned fully.
I was diagnosed end of 2019/beginning of 2020 and had ultrasounds early 2020. Spleen was normal size then. Two and 1/2 years later a CT scan found the spleen to be enlarged. But not hugely in CLL measures. That in itself is not an indication to treat. We don't re-scan to see what my spleen is doing, but my docs feel to see whether it's protruding below the ribs, and it doesn't appear to be yet.
My spleen 2-3 yrs ago was 15 cm, detected when had a sonogram of the prostate. About 9 mos mos ago it was 20.5 cm long. It is likely 3-5 cm below the rib cage, depending on whom palpates it. For the past two years I cannot sleep on my left side, really feel pressure when doing a deep bend ( try to avoid) and often feel some light pressure and occasional discomfort when sitting. All liveable. Both my CLL specialist and local hem/onc classify it as moderate enlargement, not massive . Both are not concerned at this time and do not see it as an indicator for treatment, yet. They are more int'd in my platelets, RBC, and hemoglobin. ALC is 145K.
I missed this post - so sorry for delay. Do you know why your spleen growing - are there any other symptoms?
My spleen grew massive as the CLL triggered AIHA (auto-immune haemolytic anaemia), so reds were down, reticulocytes (baby reds), HB and LDH all up. There are tests (Coombes) and symptoms (yellow eye-whites, grey pallor, yellow urine). AIHA can be treated separately from CLL (so CLL staging not really relevant) - in my case steroids did not work long term, so I had a splenectomy (from memory it was 2.5kg, so about 7 or 8 times normal size - it got clogged whilst destroying red cells, which is what AIHA does)
10 years on I have no AIHA and CLL still very much W&W (indeed lymphocytes decreasing on each 6 month draw for many years).
I was on watch and wait for 6+ years. During that time my numbers were rising very slowly but I was severely neutropenic and my spleen was enlarged. No other symptoms whatsoever. My cll specialist in Toronto discussed the possibility for a splenectomy (removal of spleen) but before we went down that path I managed to pick up severe blood poisoning requiring hospitalization (as a result of my almost non-existent neutrohils - 0.2)
Less than a year later, I started on Acalabrutinib to avoid recurrence of another nasty infection. Unfortunately, the Acalabrutinib did not work quickly like it does for a majority taking the drug. So, my cll specialist suggested mild irradiation of my spleen - apparently, for people experiencing slow progress with Acalabrutinib, this procedure may increase the effectiveness of the drug. I had 6 sessions over 2 weeks last summer. Unfortunately, while it did decrease the size of my spleen, it did not speed up my progress with Acalabrutinib like it did for some of my CLL specialists’ other patients.
The good news is that 6 months later, last Christmas, most of my numbers started to improve. So, now 10 years after diagnosis and 3+ years on Acalabrutinib, virtually all my numbers, including neutrophils (2.2), are normal for the first time.
What’s the point of all this? Each one of us with CLL will experience a unique “trip”. I think it’s very helpful to read other people’s experiences as long as you understand you will likely take a different path.
My cll specialist and I never talked about staging: our conversations centred on looking at blood numbers, existence of symptoms, life style (exercise, diet and social supports) and what he thought might be down the road. In my case, the big concern during w & w was not the size of my spleen (enlarged through my last 3 years of w & w) or my WBC/lymphocyte count (never above 25K) but the absence of neutrophils from very early on.
Thank you for sharing your experience. I agree, learning from other tea is very important and I do keep in mind each scenario is unique and different. Stay well….
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