I was diagnosed with CLL (type B) about 15 months ago from routine blood work. WBC was 21 then and is in the 90s currently. I am on Wait and Watch.
My spleen was scanned after diagnosis and was 20-25% enlarged. I’ve not had any issues from it until recently (2 months). I’m starting to consistently feel its presence via my stomach. Cannot feel anything with my hands under the rib cage- yet. I have a second scan in a few weeks to determine growth.
It’s an interesting mix of feeling full and hungry and nauseous simultaneously. The intensity increases over time and then will recede but it is always there.
Has anyone had any success with reducing the nausea without getting on meds for it?
Thanks
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TurnerBurner
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I had a large spleen at diagnosis and it got considerably larger during watch and wait. I remember reading up on it and being constantly worried it would press on my stomach and cause problems.
As big as mine got, I can’t say for sure it ever caused any problems for me. It is certainly well known that an enlarged spleen can cause stomach issues.
I am no expert, but from my own experience I wouldn’t think of your spleen being an issue for you yet. I don’t think 25% enlarged is considered to be a big problem, and if you can’t feel it below your rib cage, it’s not that big yet.
I could always feel my spleen. The good news up is that treating one’s Cll can shrink their spleens back to normal pretty fast. I couldn’t feel mine after only a couple months of ibrutinib.
You should discuss your concerns with your doctor. I am not a doctor, your doctor is in the best position to offer an opinion if your spleen is large enough to be symptomatic. And you might consider that it’s something else, other than your spleen. If it is your spleen causing you pain, that could be one indication of it being time to treat. One of the triggers for considering treatment for our Cll is whether our Cll is causing symptoms that impair our enjoyment of life. Good luck to you.
Thanks for the reply- I did share the concerns and I believe that prompted the coming second scan. Very interesting how different everyone’s journey is through this.
Similar to Cajunjeff, my spleen was enlarged enough at diagnosis to be 'tippable', i.e. large enough to protrude below my rib cage a centimetre or so. It only slowly enlarged during my 11 years of watch and wait and I really can't say that it caused me any problems. It quickly shrank back under my rib cage when I started treatment.
Are you sure you cannot feel it? You might think that what you feel is normal. That was my case. I started to feel some fullness and suspected it was my spleen and felt something when touching myself on that side but it didn't look concerning. It was only when one day, quite suddenly I had my breakfast and felt, what I thought was my stomach, expand so quickly and so much I absolutely couldn't zip my jeans that I was able to zip the previous day. It coincided with an immunologist appointment. I complained and he showed me how enlarged my spleen was, sent me for an ultrasound and it measured 21-22cm (I believe twice the size its normal size). After that I started to have a lot of symptoms. Eating wasn't fun, had to eat smaller portions, go to the toilet more often as otherwise the spleen would cause a lot of pain and it was very uncomfortable. By the evening I looked 4-5 months pregnant. Luckily it was summer and I could get away with wearing loose summer dresses. When lying on my back, you could see it protruding and poking out, it was up to my belly button. I couldn't walk long distances as I would feel pain in there, I swear that sometimes I could feel my intestines moving and "stroking" it, it felt really weird, like having some kind of an alien in there, it was honestly freaky. The spleen must have been big for a while but it only started giving me problems two months ago (end of May). I started treatment at the beginning of July and it seems my spleen is back to it's "normal" size.
Hi Poodle , you described my spleen size and symptoms perfectly ... in additional to those issues i occasionally had severe pain radiating from the top of my rib cage on the left side to all the way around to my spine which would occur if i did to much bending or working overhead ... it was like a miracle to start acalbrutinib and have my spleen shrink back under my rib cage in couple of months . hope you are doing as well as i am on the Acal . blessings , james
How long did it take after treatment started for your spleen to return to normal? It is getting quite unpleasent for me. Thank God treatment starts next week.
I didn’t notice it anymore within days after the first round (B&R infusion). Appetite came back at same time. Spleen was reduced in size when scanned at third treatment but wasn’t back to normal. Last treatment was in January and I go next month for labs and spleen scan. Hopefully it’ll be back to normal. Good luck!
Hi, very similar to Poodle2 above. Mine also reached 22 cms by treatment time and was obvious just looking at the abdomen. I had progressively worse stitch-like pain over it, a complete loss of appetite and felt full after not much food by the above stage, but no nausea.
Within a week of starting Venclexta, my spleen totally emptied and went back to normal. I was hospitalized for 4 nights instead of the expected 2, due to the metabolic changes of so many cells dying off that quickly.
Meds were about the only thing controlling the nausea, as well as only small food portions. I was eating constantly small amounts while awake, but still lost mmm 10 lbs over 6 weeks. I lost another 15 lbs before I could get started on the Venclexta. So mmmm 25 lb weight loss over 4-5 months. If you aren't planning to start treatment soon, you might want to consider it. I'll mention my neuts, RBC's and platelets were not low enough to trigger treatment. I felt awful and the weight loss/enlarged spleen was alarming; I was in a Phase 1 trial and while the drug initially worked, it stopped after a few months. It took several more months to "come off" the trial, and I had what we think was a pseudo-Richter's type thing from coming off the trial drug. So further treatment got delayed a bit, and I consequently continued to lose weight.
Nope, I treated my CLL to get my spleen to go down. It impacted my food intake such that, I was losing weight quite rapidly. It was so swollen, I looked like I was pregnant! Noticed I got treated in the grocery store like I was a pregnant lady, haha.
22cm spleen, really baggy jeans from rapid weight loss!
Wow, thats a swollen spleen. I am starting treatment mostly for the same reasons. Weight loss and a very uncomfortable spleen and surrounding real estate.
Hi TurnerBurner. I too have suffered with an enlarged spleen. In 2013 an ultrasound scan was performed and it was suggested that my spleen was around 30cm. They had to measure it in sections as they couldn’t see it all in one pass, my simple understanding. In actual fact it measured 29 cm. I was referred to radio therapy but on completion I was told it had not shrunk.
I was then referred to the Ibrutinib trial on compassionate grounds. Further scans resulted in 27 cm in 2014, 22 cm Dec 2014 and 16 cm in 2016. Since then I have not had any further scans.
I am one of those who can’t feel my spleen, too much belly fat, but always had discomfort in the abdomen and left side, I do also have Kidney disease and associated pain.
Also in the early days of treatment for my CLL it was mentioned that they may need to remove my spleen, it was suggested that my partial inflated left lung was due to my enlarged spleen, not everyone agreed.
This disease is so weird. My spleen is only 15.5 and it is super uncomfortable. I cannot even imagine 30!!!!! I can only nibble, loosing lots of weight and wish treatment was tomorrow.
Hi Pacificview, yes my spleen was described as enormous. But to be honest I wasn’t aware of any problems, probably because I assumed all my pain and discomfort was due to my Kidney disease.
I started to develop an enlarged spleen after 2 years on W&W, with same symptoms as others have described - bloating, fullness and a few episodes of quite sharp upper left sided abdominal pain that lasted for a few hours each time. My doctor said the only treatment for the enlarged spleen was to start CLL treatment. At the time, my lymphocytes were increasing so treatment was being planned anyway.
After treatment started my spleen shrunk pretty quickly and the symptoms improved, but I still had bloating (made worse by venetoclax!). Even now after treatment has finished, I am left with some bloating and can’t eat legumes (which I used to love 🙁).
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