Hiya everyone. I was wondering if those of you with an enlarged spleen could let me know what it feels like?
I have had a pinched feeling just under my left bottom rib for about two weeks now. If feels like I have a stitch or trapped wind but it's just not going.
I've made an appointment with my GP for 21st October and I see my consultant on 17th November.
I'm on watch and wait. No treatment yet. Thank you.
That describes just how mine felt Cindy and an ultrasound confirmed a slight enlargement which hasn't caused any significant problems since.
I'm still aware of it especially like now when I wake. A stitch feeling describes it well. Does it pinch more after a large meal?
Your Consultant will probably palpate the area to see if it can be felt and may suggest an ultrasound. The thing to watch with the lab results are RBC, particularly haemaglobin and platelet levels because the spleen impairs their production as it essentially clogs up.
Hope all goes well and nothing to get unduly concerned about at an early stage as the errant lymphocytes tend to migrate to the spleen in CLL so some enlargement isn't unusual. It's important to watch for increasing discomfort and impact on blood results however. My platelet levels have dropped slightly.
Best wishes,
Newdawn
Thanks Newdawn. Yes it does get worse after a large meal and if I bend over. It's not painful just uncomfortable. It puts my mind at rest that you say it's not too concerning. I was working myself up thinking that they may start treatment earlier than necessary. I hope you have a lovely week. X
Cindy, I have had pain in that area for about 6 years. There has been no MD who has considered my complaint to be worthy of a scan. The RN and Dr. both palpated to see if there was any enlargement.
I have not know if it is spleen or if it is crowding the intestine. My spleen is said to have many lesions on it (MRI done in earlier years). And, yes the feeling of fullness after eating and for most of the time is uncomfortable.
I use an ice pack at night on the left side of my abdomen, which helps me to sleep.
Newdawn, thank you for the info re: RBC, Hgb, and platelets related to the spleen--something I am beginning to get concerned about. (Not at a crisis level, just lower than normal and dropping.)
Cindy, the spleen performs an important function of removing ageing old platelets and red blood cells for recycling. As it enlarges, platelets and red blood cells pass through more filtering, so they are removed earlier than desirable. en.wikipedia.org/wiki/Spleen
With CLL infiltrating the bone marrow, production of replacement platelets and red blood cells is constrained, so these counts fall.
CLL treatment shrinks the spleen and cleans CLL cells out of the bone marrow, so blood counts recover.
What type of CLL treatment are your referring to that shrinks the spleen and cleans CLL cells out of the bone marrow?
All treatments for CLL clear the spleen and nodes, some work faster than others clearing the bone marrow. Rituxan is slow at clearing marrow as is Imbruvica (ibrutinib). Venetoclax and FCR are quite fast.
Bendamustine/rituxan and Gazyva/chlorambucil are somewhere in the mid range...
~chris 🇨🇦
Hi Cindy,
When my spleen was massive, I felt a fullness in the left upper quadrant of the belly and a general heavy feeling.
I had it removed for my ITP but it didn't help.
Stay strong. We are all in this together
Brian
CLLSociety.org
I fear each person's feeling is different.....When mine came out (to stop AIHA) it was over 12 times the size it should have been. I never felt any discomfort even though it had grown to that size....!! So what you are feeling might be your spleen...or it might be something else...... in my experience, some docs can feel expanded spleens, some cannot....hope your GP is one of the former!
Thank you Quarry. I suppose it could by a symptom of my IBS. I will let you know what my GP says.
I have had a similar feeling symptom past 3 weeks. Had been in hospital with a kidney infection a couple of weeks ago that came out of nowhere. Have had confusing back and side pain. My internist said it was condochondritis of the the ribs (cartilage hardening with age- delightful- and can be painful). Urologist says it was infection. Yet it persists. Worse sitting down. Seeing my onc on Nov 1. Hope now problem in waiting. It just feels like a guessing game sometimes. I am on watch and wait since March 2014.
Great website!! Thank you!
I have the same rib cage pain as well and they said it was condochondritis. I have thrush/ burning tounge, as well, eosinophiliac pustulas folliculitis, pinching feeling below/under left rib cage, sense of feeling full, intercystial cystitis, inflammatory bowel, and fatigue,and of course night sweats. All of which have to do with chronic inflamation. My sed rate stays high, but I don't want to take steroids because I blow up like a blow fish and have rapid weight gain that then puts nerve pressure on my hips and joints. I'm not receiving treatment as of yet. Watch and wait. It is frustrating though. 😊
I can say mine feels great again after FCR treatment that I completed last year. I do remember living with an uncomfortable spleen for some time before that treatment, I just had to be careful not bending and keeping the back straight. In my case it was one of the eventual drivers to start treatment.
Best regards,
Ernest
That's what I'm worried about Ernest. I don't want to start treatment because my spleen is swollen if my blood results are still ok. I suppose I'll have to trust my consultant. I'm glad you feel better after treatment.
Spleen enlargement is a reasonably common symptom in CLL. Mine was found to be enlarged on physical examination at diagnosis and a CT-scan confirmed that (but reassuringly also showed it to be less enlarged than the specialist thought). It hasn't changed noticeably in size in over 7 years and I'm still on W & W.
Thanks Neil. You've helped to stop me panicking.
Hi. About a year ago when I first started treatment for CLL, my Oncologist ordered a CatScan from my neck on down. It showed all my lymphnodes and vital organs. My spleen was HUGE. It squeezed my stomach clear back in a corner and my kidney over to the one side. I had always wondered why I had this "bulge" around my midriff and when I ate, I was miserable. Since my treatments (now on Imbruvica) all lymphnodes have shrunk to normal size and spleen "is getting there". No more catscans, but the Oncologist (and my Dr. have had me lay flat on my back and they push (rather harshly) real hard in that spleen area and they can actually feel the size it is. They tell me it is "going down" and will continue to shrink back to normal size the longer I am taking my Imbruvica. I can hardly wait. Very uncomfortable. Waiting game here. Hang in there. I assume you've had a scan done? If not, I'd ask if it is going to be scheduled. They really need to see what's going on "in there".
Hiya. Yes I've had an ultrasound and my spleen is normal size. I just put up with it now. I think it must be something to do with my acid reflux. Glad your treatment is working. Hopefully all your organs will be go back to their proper position once your spleen is normal sized again. Take care. X
Hi Cindy, just curious, did you ever discover why you were having that pain. I have the exact symptoms as you. I have been suffering from Gerd for an year now and like every other week, i get this spleenic pain in the upper left abdomen(more towards the backside rather than front). It feels like a knot as you said, not really a pain. I am wondering if it's the reflux causing this pressure somehow or if it is the other way around(spleen enlargment causing the reflux). I also suspect it could be the result of PPI medications that I take once a day. Like once in every 2 weeks, i stop the ppis for 2-3 days to give my stomach a rest and I've noticed i never get this pain during those times.
Hi. No I never discovered what the pain was. I’ve had several scans which show my spleen is not enlarged. I still have the pain and it only really feels slightly better if I burp. I have had it for at least two years now and so I think if it was something serious I would know by now. It is definitely worse when my reflux is bad. Mine is more towards the front than the back. I asked my consultant about it and he said it is probably stomach related. It is always best to seek advice. I don’t take ppis I take Ranatadine which works differently on my reflux. Take care. Cindy.
That describes mine bit it's been almost a month hurts 24/7.feels like it's twisted or something.my Dr has me waiting for 2 more weeks then if pain don't go away he will send me 2 another Dr to check my blood and all that idk what 2 do in the mean time.
Hi Mamat07
I’ve had this pain for over a year now. It’s no better and no worse so I’m just putting up with it. I’ve had ultrasounds and Pet scans. Nothing dodgy shows up. Ive just started FCR and my spleen is normal size. My lymph nodes have shrunk to normal size but the pain is still there so it’s not them causing it. Let me know if you get to the bottom of it. Good luck. Cindy.
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