Wondering if anyone could provide a good description of the causes of Splenomegaly specifically in CLL patients i.e. what the spleen is doing and why it enlarges in the CLL case.
I can now visibly see my spleen tip extended about 11cm now below the end of the rib cage, the ribs also sticking out. Having said that though I would still put myself only in the discomfort zone, and I can eat (always slowly) and drink ok. So far so good.
Medcicinenet provides a picture of the Liver, Spleen, Stomach etc. (elect to stay on the US site):
Wikipedia provides a CT scan image of Splenomegaly. Assume that is a cross section with the spleen on the right hand side of the picture and part of the liver on the left (assume the image is looking at the patient as I can say my spleen is certainly on my left hand side )
If anyone can point to any CLL specific write-ups or videos on Spenomegaly that would be interesting.
Also one dumb question: Would increased physical activity help drive the increasing spleen size, and/or would increased rest counteract that effect? Also any other factors that might change the growth rate?
Many thanks,
Ernest
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Chaya is still a good resource for this kind of information. (If anyone hasn't read Chaya before, have a look at the home page, where you will note her well deserved retirement in 2013 after creating and maintaining a great and very readable web site.)
Intersting to read about balance problems. I'm assumed to have possibly lost some of the sensation in my legs (unless I was naturally not good in that area) so perhaps now have two reasons for somewhat poorer balance than I think I used to have e.g. need to make sure not to walk around in the dark (Make use of all the senses)
I'm glad you asked this question, as I too have a very enlarged spleen, that has become a reason for needing treatment. I've just been looking up the links you gave (as well as links Chris gave), and I think I understand more about it now.
While following responses to Quarry's posts, I noticed this one from Dr Terry Hamblin's blog (also posted by Chris), which was very interesting - especially as splenic irradiation was one option that my doctor suggested to me.
After reading that article, I became more open to the idea of radiation to the spleen. Not ideal - nothing is - but it does seem to buy some time, without the use of more toxic chemotherapy regimes.
I'm sorry, I haven't noticed anything during my reading, about the affect of exercise on spleen size, nor any other factors that might change the growth rate.
I was surprised that you can actually SEE your spleen bulging out, Ernie. Maybe you are very thin? It's good to know that you can still eat and drink OK.
I'm finding strategies to help cope with the enlarged spleen now. The main problem is that it's pressing on my stomach, and making me feel very full, or nauseated, after I've only eaten small portions. So, I'm adapting to small, frequent meals. Drinking in between meals, not with meals. Have to be careful with balance - distended abdomen tends to alter the way I stand. Last weekend I was carrying my 5 week old grandson downstairs, in a sling round my neck. They were very steep, narrow, twisting stairs, and at one point I lost my balance and nearly fell forward - baby and all... Not good - not good at all... I've always had excellent balance, enjoyed a lifetime of scrambling up mountains, so that wobble took me by surprise.
Any other "splenomegs" out there, who have found ways to deal with this problem?
Paula
P.S. On a lighter note, I have been rather overweight for the last few years, but over the last 6 months, I've unintentionally lost enough weight to become well within the "right" range for someone of my height. The doctor said my spleen was "squashing my stomach". I thought afterwards, that it's a bit like having a "gastric band" that makes people lose weight because it reduces the capacity of their stomachs... Can't complain about that.
Many thanks Paula for a great post and sharing your thoughts.
Good to read an article by Terry, also to be able to think about the radiation possibility, if it all gets too much before the CLL treatment can start.
My weight started to drop off from age of about 35 (after the start of middle aged weight gain), but I've only been diagnosed with CLL for x4 years now in my late 40's.
Last couple of years though it had nicely stabilised at about 72kg (I'm about 6'3" with long back / short legs).
In last say 3 months though weight has started to steadily drop off again with a downward trend and I'm now about 68kg.
Fortunately I just don't understand metric weights so that helps me mentally not get fixated about the loss.
You can definately see my ribs sticking out on the LHS. the actual lump of the spleen tip (wrong word, I mean undulation) is difficult to splot unless you very carefully compare the two sides of me.
About 11cm long now (hard to say where it ends), and about an inch wide (for the visible part of course).
I was told over about 7cm is the start of the range for treatment.
Easier to detect it by very gentle feel (no need to poke and prod).
Discomfort is worse in the mornings after waking (I need to remember that when I get up).
The loss of balance is very odd, as I also used to think I was good in that area.
Lifting any weights does seem a bad idea. I try to think up ways to roll (not the baby) or "walk" anything with any weight - amazing what ideas you can think up.
Having said that have had x2 minor accidents in the last two days dropping objects, so I need to learn to take a deep breath and slow down at times, and always wear a head torch in the dark (for orientation/balance, I didn't trip in either case, although I'm sure I'm capable of that).
I've been promised that weight gain will follow after treatment so just have to wait and see.
Thanks for explaining more details of how it is for you, Ernest.
Interesting about you having balance problems too. I never expected that - I don't suppose you did, either. I guess it takes time for us to adjust to changes in our body's weight distribution. We have to remember to be more careful when lifting and carrying... especially precious things - like babies...
I also get occasional cramps and pins and needles in my toes - strange sensation I've never had before. Especially my little toes... Never thought of it as related to CLL before, but now I think it's a possibility.
I've had the pins and needles in the feet/toes for some time, and been to the Neuropathy department to have it investigated - a very interesting excercise (I was concerned it might be caused by lower back trouble but I think I now discount that, as it improves when I'm on hol with more sleep). Neuropathy results at the moment are inconclusive, but as the symptoms get worse as the CLL progresses, I do link it to CLL in my mind, and hence don't worry about it. Decision is to wait and see what happens with the CLL treatment. My legs still work well though (just try to avoid walking around in the dark, and have a low power LED lamp on the stair landing at home now).
For leg cramps at night I don't know if that is connected at all with the above (apart from the CLL of course). They are also getting slowly worse with the CLL progression. I'll start a separate post on those, and the daft things I do to get them, and workaround the effects.
So you've had pins and needles in the feet too... Did the neuropathy dept have any suggestions, other than saying results were inconclusive? My foot cramps/pins and needles only come when I'm in bed - especially if I put my feet on a warm bean bag (a bag of cherry stones I heat up in the microwave). When I'm up and about it doesn't happen so I tend to forget about it.
Yes, it would be good if you did write a separate post about leg cramps. People have discussed cramps in the past, but new people are joining the site all the time, and may have some new ideas.
Wishing you all the best, as you start on the FLAIR trial. I'm sure your spleen will be very relieved... Do let us know how it goes..
Writing about leg cramps at night (And occasionally in the day) is next on my list.
It does tend to mean these days I don't need an an alarm clock.
The pins and needles is more of a day time thing, and I think of as a separate issue. There I've just got to wait and see the effect of treatment (I think it could go either way, but I hope of course for improvement).
Anyhow my legs are still functionally getting me around fine, just have to walk at a very steady pace these days when walking any distance, which I don't get to attempt very often at the moment for one reason and another (Dreaming of a country walk - even in November)
Many thanks Ernie and Paula for sharing the problem you are both facing. I have a feeling quite a few people in our community will follow your dialogue with interest, and find it helpful, even if they do not post.
You are an example of the value of our community, helping each other is what it is all about.
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