I was diagnosed with CLL back in September. I am in W&W. I had a few instances of unusual shortness of breath that had me go in for a check up but I was also noticing a sore stomach that feels bloated or mild burning. I live in a rather remote community so most of my research in to CLL is done online. I am not sure if this is a CLL symptom or not. Appreciate any feedback. I did have a physical at the time of initial diagnosis and nothing was deemed out of the ordinary save for the blood work.
If it is a part of CLL would appreciate any tips on how to treat.
Again thanks for any insights.
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When my spleen was enlarged with CLL cells, I had some stomach problems. It's hard to say if a random symptom is CLL related or not. It's more, are there a number of symptoms, that might point to it being CLL related IMO. In my case, I had weight loss along with the GI problems, and felt more fatigued than usual, and my night sweats started again.
The 1st suggestion I always make with stomach issues is to document when they happened, what they felt like (and exactly where), how long they lasted, and what you ate that day. If you keep a food journal like this for 2-4 weeks, you can start to pinpoint if it's CLL related (aka, the spleen) or if you might be having other issues, like a gallbladder issue (been there/done that), a newfound food allergy/intolerance/sensitivity (been there/done that), generic upset from gas causing foods (been there/done that - see a trend:), etc. Pretty much, you rule out the latter causes and start focusing on the former.
if your spleen is enlarged it could affect all of these!
I’ve had enlargement of spleen twice and had similar symptoms before round 1 of Tx in 2018 and all this winter til I started treatment last week again.
Both times all of my docs missed it and after getting an US in both cases did we see the spleen at 2-3 fold larger than normal
I will also mention - if your journal is not pinpointing anything in 2-3 weeks, I would go to gastro to get a full work up and a colonoscopy (regular or virtual). You should be able to check for any other issues that I didn't mention above (like colon cancer, diverticulitus, IBD/IBS, ulcers, etc) that might also be in play, separate from the spleen...
If you can populate your Bio with your WHITE BLOOD CELL COUNT
HGB
PLATELETS
ABSOLUTE NEUTROPHIL COUNT etc and some history?
That would help us to give you a better imput.
Could be enlarged spleen as it is a CLL symptom. When my spleen first started bothering me. It was about a year ago and it was just a stitch in the side. Last six months my spleen has provided a whole variety of symptoms, all unpleasent.
Treatment triggers for me, shortness of breath at times. Spleen can press on lung and stomach. So if you move your torso in a certain way. You might find yourself alittle short on breath, I have. Throw in some rib, stomach, alittle left side back pain, hickups, heartburn etc. My prostate has been a pill for the whole 4.5 years since diagnosis. Hoping O & V drains all the inflamatory CLL in it, we ahall see pretty soon. As i started O & V treatment today. O starts first and V added on the 12th of March 2023.
Weight loss (15lbs for me), can't lay on left side as spleen area gurts too much. Skin issues arrising, red dots, itching etc.
So my blood numbers are rising, but still slowly. It was my symptomatic disease that caused the Doc to say its time. Thats 4.5 years since diagnosis.
My spleen hurts just as I am lying in bed typing this with my thumbs on my smart phone.
I was supprised how the spleen can go from a nothingburger to a major issue within a couple months, so beware. I was not taking it seriously until spleenomegaly symptoms ratcheted up.
I have to baby the spleen now till it shrinks and that reduces quality of life.
To repeat, treating symptomatic disease is important. One would not want to ignore the symptoms and end up with a lacerated or burst spleen. We need that spleen!!!
I am tired of thumb typing so I will end this reaponse. Please excuse and typos or grammatical errors as I am going to sleep...
we really don't want *White Blood Cell* count, it's Lymphocytes we track, along with the others. It's more important to look at the various white blood cell types,not their total number. For example, bloodwork could change from eosinophils now sky high and neutrphils low, and a total WBC could be unchanged from a lab value previously drawn.
I have had a few stomach problems. Initially I thought it could be IBS but couldnt really see what food was causing my problems. Not sure how I thought of it, but decided that perhaps I was having too much fibre. So I cut out wholemeal bread and avoid pasta. Fingers crossed, that seems to be helping. Good luck
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