Hi all,I am on W&W for 2 years now since diagnosed and have started experiencing dull pain under my left ribs. It is more or less constant and I am wondering if this may be a sign of enlarged spleen due to my CLL? I am not seeing my specialist for a couple of months so really concerned about this. Otherwise I feel fine and am leading a 'normal' life. Has anyone experienced this kind of pain? My last bloods in September were Wbc at 33.8, Lymphs at 28.4 and Platelets at 184.
Thanks for any feedback!
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Titian72
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It could be your spleen. Can you feel it? Mine was 21cm and I could feel it for a while but it wasn't causing any troubles. However, when it started causing problems, it came on quite suddenly and it was very painful, very uncomfortable and I would get bloated during the day as my stomach was filling up. Really horrible. Better in the morning, getting worse as the day went. You can call your consultant to discuss or go to a&e if the pain is getting worse. They can do an ultrasound to measure it and to check you. Your spleen can rupture when it is enlarged, it is VERY rare but something to be aware of.
I’m in a similar situation…without any diagnosis. For the last two years, I’ve had a localized pain halfway between my naval and the bottom of my left rib cage. It is not too bad, just worrisome (especially as it has become more noticeable over time). I’ve had a scope down my throat and also an abdominal sonogram, with no abnormalities detected. My internist gave up saying many abdominal pains are never diagnosed…I find it pretty incredible that my localized pain can’t be attributed to a specific organ as there is really only abdominal muscle, colon, pancreas and stomach directly below the area of localized pain…
As both a CLL patient with an enlarged spleen and lymphadenopathy in my chest and abdomen, and as a medical doctor, I strongly recommend a CT scan of the chest and abdomen with contrast.
Other things to consider are metastatic melanoma or squamous cell carcinoma if you have had these types of skin cancers that are common in CLL patients and grow and spread rapidly. I've had 7 and this is why I have a dermatologist that specializes in skin cancer evaluate every inch of my skin at 3 month intervals.
Thank you for the advice, I have the CT with contrast scans once per year and the last one was in January of 2022, showing a stable lymphadenopathy. I am assuming the next scan will be due in the next month or so
Agreed, your local doc can palpate it to see if it, and other nodes, are enlarged. If so, that would be a basis to get the consultant appointment bumped up.
I started feeling a pinch/dull ache just under the left ribcage early in 2022. ALC counts at that time were in the 50s. The pain was intermittent at first and relatively mild, 3 out of 10. Precautionary CAT scan at that time showed spleen at 18cm at this juncture (I'm a relatively tall male). I had one CAT scan done as baseline when initially diagnosed in early 2021 and it was 14cm at that time.
As counts accelerated this fall, I started noticing flare ups of pain. It did not seem to correlate to much. At ALC around 100, the pain was more or less constant, but had days where it was more 5/10 and days where it was 2/10 or 3/10. I would occasionally have shortness of breath and my exercise tolerance dropped markedly. My spleen was tender to touch on doctors' examination.
This Thanksgiving I had an abrupt spike to 7/10 and pain expanded down the left side of my abdomen. Eventually I went to the ER and was diagnosed with a lacerated spleen and some areas where the spleen growth was outpacing available blood flow. A course of methylprednisolone got things under control, with some spikes in ALC count and other manageable effects. Surgery was ruled out as my lacerations were not severe. CAT scan showed a spleen 21cm at that point. I do not recall any trauma to the spleen causing this incident.
This last situation triggered CLL treatment discussions and I am headed in tomorrow to finish up qualification testing for a clinical trial. I have associated lymph node swelling, but not as much as the spleen. I do have reduced platelets and some anemia as well.
Doctor's advice through all this was that spleen swelling is manageable, but spleen ruptures and/or removal were not good outcomes. I was advised to report spikes in pain (which I did) and avoid jarring the abdomen. "You can go to the beach, but take it easy. No horseback riding or ATVs."
Note that my CLL progression has been relatively rapid, with 20 months to first treatment. Many patients progress much more slowly.
I felt discomfort from my enlarged spleen and it also really aggravated my heartburn. It could, however, be something else. It would not be unreasonable to check out other potential issues with your GP, have your heart checked out, etc.
If it is your spleen, you may find eating smaller amounts at any one time is helpful and to avoid acidic foods (tomatoes, tomato sauce, citrus of any kind in any form) and avoid as much processed food as you can.
I found it more comfortable to sleep on my right side or back. Once I started treatment and my spleen was not so enlarged (it can no longer be palpated), these symptoms abated.
It is OK to contact your specialist if something starts to bother you. We don’t have to stoically await our next appointment.
Thank you so much, the diet is what I have been doing anyway, never have eaten processed foods really-I have made an appointment to see my gp doctor tomorrow and will take it from there, thanks again for your insights
I had a pain under my left rib for several months. A scan showed a normal spleen and eventually I was diagnosed with costocondritis. So maybe you just need to see a Doctor.
Titan72, you received good responses from many. My enlarged spleen occasionally reminds me it "needs more room". I'm still disciplining myself to eat smaller meals and avoid some that result in a tight feeling there. The recent Thanksgiving feast was a challenge! I am in W&W and the doctor says as long as I can manage my care this way, I'm OK. 🙂Sandra
prior to being diagnosed I bud pain under my left rib. Not a terrible pain, but enough to notice. I’m in remission right now, and although my blood work is ok, I am beginning to get the spleen twinges again. That would suggest it is growing. Remember b cells live in the lymphatic system, and the spleen is a place where they nature and multiply. At my worst point my spleen grew to half the size of my stomach, so although your can get pain, it’s not always a sign for treatment.
have you had Covid or a vaccine recently? I first had rib pain after a vaccine. And went to the doctor who said I was the third patient that week with rib pain after a vaccine. One ultrasound and my appt with oncologist later and no diagnosis. Apparently not related to the CLL.
That is interesting, I had a last covid vaccine earlier this year (over 6 months ago) but did catch the Omicron at the end of October and was unwell for 10 days - the Paxlovid antivirals really helped me
I would suggest that you contact your Haematology Dept and ask for your appointment with Haematology Consultant to be brought forward. If your Haematology Department has Specialist Haematology Nurses you could also speak to them over the phone and they can relay information to your Consultant. If the Haematologist suspects that your spleen is enlarged then they can arrange a scan to confirm this.
It’s good to hear that you’ve contacted your CLL Specialist and that they will bring your appointment forward. I hope you will get the appointment very soon.
I’ve also had this issue, starting this year when my count started to go up more rapidly. I’ve been lucky that it’s not been too painful but on the worst days (when particularly stressed or exhausted) I couldn’t stand completely straight as the swollen spleen was too great. I’ve not had any scans but my doctor - when I eventually managed to get him to look at it - stated it was extremely enlarged. This was the deciding factor in ending W&W and starting on Acalabrutinib. Signs of a growing spleen - as covered by others here - are swelling in the abdomen, going up a waist size when you’re not putting on weight in other areas, a more rigid feeling when you press the left side of your stomach, feeling of pressure in your lower ribs, and sensitivity to restriction from firm waistbands. The way I tried to measure the size of my spleen was to lightly put pressure on my stomach, running from ribs down towards pelvis, and comparing the level of firmness with the other side; not exactly infallible (!) but gives me an idea of how big it is. You do need to be careful not to bang your stomach, avoid contact sports for sure. Might not be a problem that you’re not seeing your doctor for 2 months; my symptoms started in Feb and I didn’t see my Doctor till July and even then he wanted to wait another month before deciding on a course of action. I eventually started treatment in November, can’t say the spleen has reduced yet but fingers crossed!
You are right about R/o of spleen enlargement. You need CT to measure the size of spleen and compare to the size of any measurement you had 2 years ago when diagnosed. I'm also on W&W in last 9 years and have the same symptoms. My spleen has increased 4 cm in last 4 years. It doesn't press my stomach to force me to eat less. It is just inconvenience. Keep checking your blood test every 3 month and hope the spleen discomfort is tolerable but you know well you might eventually need treatment.
I was diagnosed with CLL 3.5 years ago. My bloods are pretty much the same as yours except your platelets are normal. In the second year of being diagnosed, my spleen started to enlarge and was very uncomfortable at times. However it was not enlarged all the time, also it wasn't when I saw my consultant! I was given a scan and nothing sinister showed up. Although the problem hasn't gone away I just feel it is part of the condition. I have heard of others experiencing the same thing. On my last visit to the consultant she said the spleen can enlarge in times of stress or when fighting infection. Mine also enlarges after vaccines, recently I had the inactivated 2 dose shingles vaccine Shingerix and my spleen didn't like that :-). It is still wise to have the scan to make sure nothing untoward is going on.
it sounds like an enlarged spleen. I had that several years ago. You need to contact your doctor or specialist and let them know and they will decide if you need additional tests. Good luck
I had an enlarged spleen and the pain you are describing. It was pretty constant and difficult to find a comfortable position for sleeping. This was while I was on W&W.Happily, my treatment resolved both the enlarged spleen and the pain. It's been nearly a year and a half since my treatment ended and I have not had that pain since.
I would think your hematologist/oncologist would want to do a CT scan to verify the cause.
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