CLL with Abdominal discomfort.

[Indie1234]

I’ve had abdo discomfort for nearly 2 months now. Diagnosed with CLL 2008. No treatment. WCC around 40,000 to 56000. Lymph s around

36000. They do fluctuate. I had a CT scan last week which showed multiple enlarged Para aortic , Mesenteric, and Inguinal lymph nodes. Not sure if they would be causing this abdo discomfort. Spleen and Liver were normal. Any thoughts on this?

Indie

[cajunjeff]

I am no doctor, but I would think it very possible an enlarged mesenteric node could cause stomach pain, just given the location of the node. Depending on where you are feeling discomfort, any one of those nodes could be pressing on something causing pain. They are all close to your abdomen.

This is a doctor question for sure. What does your doctor say? Having enlarged nodes that cause pain can be one of the indications for treatment. I

[Indie1234 in reply to cajunjeff]

Thanks for your reply. Following the CT scan I was told I needed to see my GP. He has referred me to my Haem/Onc. I see him next week.

Indie

[Jemorgen]

I also have a lot of enlarged nodes in my mesentery and yes, I’ve had a lot of discomfort in my abdomen. I have written about it before and I think there are a few posts to search (if you’re not using the mobile app). Basically I have found great relief by cutting out chocolate- while I eat quite a healthy diet overall, I was eating waay too much chocolate. I also find it best to stick to foods that don’t inflame my gut. For me that means following the low FODMAP diet - well researched and evidence-based. I think there’s something to the idea of my nodes and my guts fighting for space. Happy to chat about this more.

Heather 🇨🇦

[cllmom in reply to Jemorgen]

I have been dealing with the same problems since January. I just had CT scan Thursday, May 9, 2019, and am currently awaiting results. Are they considering treatment or anything at this point. I had my tonsils out in November 2018, do to them being enlarged. Wishing you the best of luck.

[Indie1234 in reply to cllmom]

Thanks for replying. I had a large lymph node removed from base of my tongue 2 yrs ago. I see the specialist next week. I’ll post his comments. Hope your CT scan results are ok.

[Indie1234 in reply to Jemorgen]

Thanks for your reply Heather. I’ll post again after I see my Specialist. Sounds like I should eliminate chocolate. I have been having a bland diet but it hasn’t really helped.

[Jemorgen in reply to Indie1234]

Ya, it’s going to be uncomfortable regardless. It’s about trying to do a little here and a little there to keep it more manageable. For me I avoid certain foods and try to keep my meal sizes smaller, wear looser clothes, keep chocolate to a bare minimum if at all. I do find I’m getting more used to this new feeling. It is what it is.

[Indie1234 in reply to Jemorgen]

Yes, when you mentioned looser clothing, I remembered that I am feeling that all my slacks or jeans feel really uncomfortable around the waistline.

[cajunjeff in reply to Indie1234]

If it’s nausea and indigestion, I would be thinking diet. If it’s more just stomach pain, I would wonder if is just a matter of the nodes pushing on the stomach and making it hurt.

Some folks report a loss of appetite if it’s node pushing on stomach causing the pain. It’s like a lap band making the stomach smaller. I know that stomach pain and loss of appetite can be associated with a swollen spleen crowding the stomach.

I hope your doc figures it out. If it’s node related and seriously impacting your quality of life, treatment might be a consideration. Drugs like Ibrutinib work very fast shrinking nodes.

[Jemorgen]

Good luck Indie!