Have any cll patients had any abdominal discomfort while on w and w?

[Crawley]

Was diagnosed around 8 years ago,last hospital visit had a WBC of around 80,platelets were around 100 mark,was wondering if enlarged spleen was causing this?

[Cllcanada Top Poster CURE Hero]

Spleen enlargement may be giving you diaphragm problems, but it could also be enlarged internal nodes. It is certainly something you need to discuss with your CLL doctor fairly promptly. Perhaps a CTscan is in order. Platelets at 100 usually triggers a pre-treatment assessment according to most CLL Guidelines.

See bloodjournal.hematologylibr...

[Mikey47]

Hi Crawley,

Yes, I had abdominal pain and discomfort over a long period which was ignored by my consultant in Portsmouth until I asked for a CT scan. Even though I am 11q deleted which is notorious for bulky lymph, it was not taken seriously. The scan showed extensive lymph in my abdomen and on my spine, which was at first suspected to be high grade lymphoma but fortunately turned out to be not so, after a PETscan.

At that point I asked for a referral and am now at Bournemouth hospital, where I was given the PETscan and on the RESONATE2 study and on the Ibrutinib (Imbruvica) arm.

Certainly ask for a CT scan, do you know your FISH type? We have to be our own advocates as you will see as you read around the forum.

[Kating1940 in reply to Mikey47]

Hi Crawley, I am experiencing the same thing I feel pressure below my rib cage both on the right and left side. Wanted to know if this got better for you and how? I have been started on Chlorambucil and finished 1 cycle of 21 days on June 1. I really would appreciate hearing back from you as I am scared this pressure/pain I am experiencing will never go away. Hoping to hear back from you soon!

[AdaYoung]

After being diagnosed just over three years ago with CLL and still at the W.W stage. I also suffer from an enlarged fatty liver which causes pain on my right side and I do have some pain to the left side which I assume is my spleen.

I have recently had a C.T scan but have not received any results as yet.

[Immie]

Agree with Mikey47 please do get checked out. Consultant should be able to check to see if anything distended or enlarged and back up with CT scan. It could be enlarged lymph nodes in the stomach which may not be adversely affecting blood results.

[Kating1940 in reply to Immie]

Immie, my blood results were good and I kept telling the doctors that I feel pressure/pain below my rib cage both on the right and left side for about 1 year. I finally got a CT scan and they confirmed my spleen is 17cm and my liver has enlarged as well as elevated Liver blood tests.

Wanted to know if this got better for you and how? I have been started on Chlorambucil and finished 1 cycle of 21 days on June 1. I really would appreciate hearing back from you as I am scared this pressure/pain I am experiencing will never go away. Hoping to hear back from you soon!

[shoshanaz]

Thanks for posting. It is helpful to share symptoms to see what are more common issues.

I've also been experiencing some of these things. Pain under my right ribs for over a year, but nothing particularly obvious. A CT scan (September) shows I have enlarged ("tomato size") lymph nodes in my abdomen, smaller but enlarged ones also in pelvic area. It makes sense to me that the discomfort might be caused by pressure (which is what it feels like) against other internal body parts. (The right rib pain could be from a small hemangioma on my liver.) I'm still W&W but suspect that Tx may be in my future.