I'm on "watch n wait" and I don't post often but definitely always on here reading all posts with much interest.
So, my numbers have been pretty steady for the last few months, still not triggering treatment, however my spleen seems to be enlarging (?)....I dont know that for a fact except I seem to have more discomfort in that area, to the point of making it almost uncomfortable to sleep on my left side which has me wondering; Can that in itself be reason enough to start treatment or are there other things available to "help" the spleen be "less of a pain" so to speak?
I mean, I know ultimately I have to check with my Doctor but would still welcome any and all input, (precisely to prepare for next appt).
Thanks.
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Que-sera-sera
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This oldish but nevertheless comprehensive article on everything spleen related by the wonderful Chaya Venkat will tell you most of what you'll need to know in preparation for your forthcoming visit to the doctor. Hope you find it useful.
It's likely your doctor will order an ultrasound to assess the size of your spleen. That's what mine did and found some enlargement which causes a stitch like feeling and sometimes an ache. He'll know from your blood results, particularly platelet levels and RBC/haemoglobin whether it's starting to 'clog' and cause problems.
We are all different, but my spleen was 12 times normal size on removal: I never felt it or had any discomfort! I am confident my haematologist could feel its size, but not confident the surgeon(s) nor their students had any idea as to size pre-op (despite 'laying on of hands' and ultrasounds!).
There are several reasons why it might clog up due to CLL/related conditions.....but given your bloods are good, are you 100% sure it is your spleen causing the discomfort?.......I really would check with your doc (I assume a haematologist).
Mine weighed 2.2 kgs upon removal, according to the surgical notes.
In my case too, the surgeon clearly underestimated the size prior to removal. I was set up for keyhole surgery, with all the cuts made and instruments installed. Then they decided they would need more of a "doorway" rather than a keyhole.
Prior to removal, I must say that it caused me very little discomfort or symptoms....maybe the occasional full feeling.
I raise your 2.2kg......to 2.5kg! Apparently they spent well over an hour trying keyhole (cutting away spleen and trying to get it out), before resorting to a barn door approach! First 'conversion' the surgeon had done for years.....appears to have hurt his pride: if only he had looked at the ultrasound before............
Wow! 12 Times the size and you didn't feel it! You're right I guess is not the same for everybody. And no, not sure is the spleen but given our condition, it seems "the default". I did call my Specialist for an appt and instead of an ultrasound he ordered separate blood work? Also I'm an "ectomorph", so not sure if that makes it more noticeable if things are enlarging within.
Ectomorph is a new word for me, but googling it, maybe you are right (I guess I am a mesomorph - who knows! Not skinny, not fat...). However, only a doc will know.
It is easy to blame things on CLL, but there are a lot of things out there which have nothing to do with CLL: we have not become immune to these!
You're absolutely right. Matter of fact I'm also thinking it could be H-Pilory and/or related ulcer(s), which I've had before. If it is back, I might only stick to cooked foods going forward...Lol!
I have been diagnosed with CLL for over 10 years. Following diagnosis I was monitored and until last year no intervention was considered necessary. The physical impact of my condition was a gradual increase in the size of my spleen. Although I had occasional discomfort and the size of my spleen was measured at every appointment, my consultant decided that treatment was unnecessary until last year. Following a CT scan it was shown that my spleen was twice its normal size. I was given a 6 months course of bendamustine which has reduced my spleen to normal. In my experience, you should be able to feel the extent of your spleen by feeling the area below your left rib cage. If you find a hard edge ebge extending beyond the rib cage, that's your spleen which would normally be encased and protected by your rib cage.
What you've described is the process of 'tipping' the spleen, which as you state should not normally be possible, because it is safely protected by the rib cage. This is something our specialists should do during our examinations to check (a) whether the spleen has enlarged enough to be felt/tipped - an indication of CLL progression and (b) whether it has changed (typically grown) since the last examination.
Que-sera-sera , you should check your specialist's report to find out what stage you are and whether your spleen is enlarged. As you've noted, it's probably easiest to get that information by asking your regular GP to check through your specialist's report(s) for any mention of your spleen status. Spleen enlargement puts you into Rai stage II.
This is anecdotal, but since being diagnosed my spleen seems to 'grow' and 'shrink' periodically, which - when enlarged - gives me discomfort in my lower left side. I have no idea what the trigger for this might be, and it's not giving discomfort at the moment.
Deveritt...I hope mine does the same! Supposedly there's a "spleen friendly diet" out there, but I can't keep up; it just seems like everything we consume, is good for one thing but bad for another
I don't recall hearing of a "spleen friendly diet" with respect to CLL, where the spleen is generally considered as a large, specialised lymph node. Frankly I recommend you try and relax and put your concerns about your spleen aside until your specialist checks it. Easier said than done I know .
I had my spleen removed of ITP 9 years ago and am doing fine. If it might be in the cards, ask your doctor about getting all your appropriate vaccines well before the surgery. Here is the article I wrote about the spleen in CLL:
Thank you for your kind reply and thorough article with very interesting points and not to focus on the wrong thing, but if I may, I liked that you mentioned that the spleen has long been associated (in Literature) with emotions, especially melancholy and so if I didn't have CLL I wonder if I would be having other issues with my spleen because I've always been someone very melancholic...sort of like an "old soul", even back in my teens. Anyway...TMI, but I do find it to be a bit of a curious coincidence.
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