I feel somewhat stupid with this question, but I'd truly appreciate any input you can give.
I've had a bunch of abdominal discomfort, especially after eating, with food taking a long time to go through the stomach. When I walk, even hours later, I hear and feel it swishing around inside my stomach. My wife has also mentioned a number of times in the last few months that it looks like my abdomen is getting larger; yet, I've been eating a lot less and healthier too.
I finally gave in after about six months of this and saw a Gastro. He said he wasnt worried about the food swishing for hours, but because I have CLL and mentioned my abdomen getting larger, he ordered a CT of Abdomen with Contrast. Had this on Wednesday and the report actually got to my Gastro that afternoon. He said both the spleen and the liver are a bit larger than two years ago, and he wasnt yet worried about the organs. What did concern him was the large proliferation of lymph nodes. This is from the report:
Lymph nodes: There is new extensive lymphadenopathy involving retrocrural,
obturator, and iliac chains, to lesser extent in the inguinal regions and
partially imaged in the lower mediastinum and hila. Findings are keeping with
known CLL and new when compared to 11/22/2017
The report then goes on to talk about size of some of the Lymph Nodes like this:
Measurements are as follows:
1. Portacaval 4.7 x 3.8 cm lymph node on image 34. This was 1.6 x 1 cm in 2017.
2. Right external iliac 4 x 2.5 cm lymph node image 77. Previously this was 1.4
x 1.1 cm.
I know some of you are way advanced in knowledge beyond most of us, and I was a biology major fifty years ago, and I'm wondering if anyone can give me any input on this. I did sent the disk to Boston (I'm in Florida), but it won't get there until Tuesday.
Aside from the input by some of the more knowledgeable of you on the lymph nodes, can others give me any input on increase in abdomen size. Is is possible that CLL could cause the abdomen to increase a bit, or am I just not doing well enough with limiting eating and need more exercise? Overall I'm worried about the lymph node increase in numbers and in particular in size of them.
Thank you as always for the help.
Carl
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wizzard166
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The spleen alone can cause abdominal increase in size, with CLL/SLL and internal lymph nodes enlarging in numbers and having the liver also a bit enlarged all would make for less room and and need to "bulge" especially if you are prone to eating a lot of carbohydrates that can put bellyfat in the abdomen,
I have had some of the internal lymph nodes be found to enlarge and then decrease over my long term of watch and wait. I have had to cut back on the size of my meals and now (after 20 years, I am eating only breakfast and lunch while maintaining my weight and I in no way feel hungry. What you eat is important for digestion and emptying the stomach in a timely manner. Exercise helps also. How much you eat is also important in view of the abdominal space. Some eat four small meals a day--not snacks, but veggies, raw or cooked and not the feel full each meal, but to regulate the amount the stomach has to deal with.
It might help you to moderate you servings and to increase the number (not servings, try to have one of them daily) of vegetables that can help with digestion. Usually not the favorites, but cabbage, broccoli, and cauliflower are good for intestinal health
I do not know what your CLL/SLL profile is which can a difference to the CLL specialist in regard to the PCs findings of changes in internal lymph nodes.
I am assuming your CLL specialist is in Boston and will report back to you when the PCs findings are reported. Please let us know what the specialist says.
I'm thinking your are totally correct with respect to the foods I eat and the Gastroparesis symptoms. I need to stick to eating a lot less, stick to easier to digest foods, softer foods, and the idea of smaller amounts more frequently is probably wise too.
I lived with this swishing sound and feeling of liquids in my stomach even hours after meals already for around eight months. I didnt want to give in and go to the Gastro because I feared the tubes down the throat or up the rear end, and all of the nasty things involved with those tests. In the end when I gave in and went to him Wednesday, and admitted trying not to see him, he said he wasnt worried about the swishing fluids in my stomach. He was more concerned about the growth in the abdomen due to my existing diagnosis of CLL. He wasnt worried about the organs, but he though the lymph nodes might be proliferating and suggested the CT Scan.
When you say profile, I'm not sure what you mean. I know I have Trisomy 12 and Non Mutated IGHV
I'm seen by Jennifer Brown at Dana Farber, and the disc will reach Boston on Tuesday, so I imagine I'll hear from her toward the end of next week. I'm due to see her for my six month on April 13 anyway, so my guess is she will be comfortable with waiting until I see her then. Her people did multiple CT Scans on my first visit there on Feb 18, 2020, so they now have a one year comparison with the new CT disc.
In regard to foods--be sure to eat, the inclusion of High Fiber foods is what I was trying to get at. Here is a link for a list of that important food list.
I have large abdominal nodes, up to 5cm. They have been stable and it seems not unusual with SLL presentation so my doc was not concerned, and they do not bother me. But I think growth is a concern, especially if it is fast. I think it is up to a doctor to evaluate.
Hey Dfksll, thanks for the input. I'm aware enough from past reading on Google that the guideline is under 3 cm might not be Cancer, but over 3 is supposed to be a pretty positive indication of Cancer. Now I know I have Cancer with CLL, but these Lymph nodes are all over my body and the larger ones in the lower areas particularly. I've understood that our group of CLL patients normally see the Cancer stay in the Blood and doesnt spread to other organs; although, it can spread in some of us. That is the big difference between CLL and regular Leukemia, the fact it rarely spreads. So when I read the numbers over 4 CM I assume certain Cancer, and wondered if the fact that it is lymph nodes and not blood cells was a reason to worry about spread
I do not know in general. I just know that in my presentation SLL it is typical to have large nodes. They are all over my body - mostly neck, abdomen, armpits, but also elsewhere. It is annoying and they also grow but not that fast. The doc also needs to check they aren't blocking anything, which they might, like a kidney or similar...
Normally lymph nodes are under 10mm in the longest dimension. The relevant treatment trigger is when they exceed 100mm in the longest dimension or begin to interfere with organs, blood supply or nerves.
CLL/SLL differs from solid tumours and some other lymphoid cancers in that node growth is through infiltration of an existing node, not a new, extranodal tumour growth.
As usual your input is very helpful Neil. I began to worry because I read something about size, when I had a couple of nodules found in my lung after a CT Scan following a bout with Pneumonia. There was nothing to compare to, so they recommended a regimen of one CT every three months for one year (I think that is the NCI guidelines). If there was no growth at all after one year, then they go to one in the next year.
At that time I of course was anxious to know what they considered a problem, and I learned about the size with respect to cancer or no cancer. Under 1 CM was considered to be non cancerous and over 3 CM was almost definitely cancer. So when I saw on this report that they had a comparison CT of the Abdomen from 2017, and the sizes went on a couple of them from 1 CM to 4 CM it freaked me a bit.
If I'm understanding what you wrote, lymph nodes are totally different from Nodules with respect to this growth in size. In other words being 4 CM with the Lymph Nodes, considering I have CLL, is not necessarily a concern. Did I get that right?
Carl, it sounds to me like you are having some progression with your nodes, but maybe not to the point treatment is indicated. The iwcll treatment guidelines talk about massive nodes greater than 10 cm being a treatment trigger and it doesn't sound like you have any near that big. Another treatment trigger is "progressive or symptomatic lymphadenopathy". That criteria is more arbitrary to me, and you might could have symptoms from your nodes, its hard to tell.
When I think of stomach issues and cll, I think of the spleen getting so big it presses on the stomach. That more likely occurs with a massive spleen (ie, ≥6 cm below the left costal margin). It doesn't sound if you are there yet.
My gut reaction to the stomach problems is that your cll is a suspect, but perhaps not the main suspect. It sounds like your cll and nodes are progressing, but that's kind of what happens for most in watch and wait. I would ask your doctor if the nodes are at a point where treatment is indicated. If the nodes are the casue of your stomach problems, then that would be symptomatic lymphadenopathy that might warrant a conversation about treatment with your doctor.
There are so many other causes for stomach problems other than cll, its hard to say what is going on. My business partner, who does not have cll, has been having all sorts of stomach problems and a bunch of normal tests, which is frustrating for him. Sometime its just having stomach bacteria out of sorts, which can be hard to diagnose.
Thank you Jeff. The spleen is up to 15 cm from 12 in 2017. I'm thinking the stomach issues have to do with Gastroparesis, which is why I hear and feel the swishing of fluid in the stomach even two hours after eating. With this condition the usual reason is the stomach muscles are not functioning well, so they are not pushing the digested food on to the next area of digestion. From what I've read there really isnt any treatment that works uniformly well. Medications, surgery, diet are the usual recommendations, and it sounds to me like diet is the best idea. They say to eat lite, and eat softer things and easy to digest things. I'm going to lay off of the Bacon double cheeseburgers for now.
My thoughts are of gastric matters: are you on PPI meds for reflux?
Eg omeprazole
The stomach is seen to empty based on achieving a certain acidity; thus PPI meds (suppressing acid secretion) may be seen to be linked with less reliable stomach emptying.. less reliable digestion.. also, it explains some suggestions for sipping a glass of water with a spoonful of cider vinegar before a meal — to add acidity to the stomach to aid digestion.
— acidity/acid production is said to reduce with age.
I don't suffer from gastric reflux, and am not on those typical meds. Late at night when going to bed, if I lay facing my left instead of my right I sometimes have reflux; especially, if I've had a vodka or two. So lay off the vodka and sleep mostly facing the right and I'm fine.
Really good input Shedman. When I said if I face left i meant if I'm lying face down, so I'm actually lying down pressure wise on my right side and facing left. So what you said makes sense about being better laying on your left side. Alcohol is the real killer for the late night. I get acid reflux, and also get dehydrated. Doesnt make for a good night sleep, like when young and you just pass out for the night.
My own experience with lymph nodes is, as they change size, sometimes it affects me. Sinuses, bowels, stomach.....I wonder if my intermittent sciatic like pain will resolve as my treatment continues. (i.e., is a lymph node pressing on a nerve somewhere?) I had developed a symptom of "hearing my heartbeat" when going to bed, and increasing tinnitus, over the past few months. I have also had recent worsening bowl/stomach issues. I thought it likely it was my TMJ problems for the heartbeat in my head, and I am sure my TMJ issue contributes at least somewhat, but this symptom as well as my GI ones are decreasing starting about week 3 of treatment. My spleen and apparently lymph nodes are getting cleared by therapy. So maybe the changing size is pressing on something that regulates stomach emptying, but I don't know how you could prove it. Except if you start treatment & as the lymph nodes shrink, your GI problems resolve.
Hi SofiaDeo, I have to comment on your statement about "hearing my heartbeat" as I too had that problem. I can't remember exactly when it started, but I think it was at least a couple of months before treatment started, and treatment started for me in mid December 2020. I'm about two months into treatment now (O & V) and I hardly ever notice hearing my heartbeat anymore. So I think the issue of hearing it, is going away. I can only assume it is yet another 'minor' symptom of CLL, which treatment is rectifying. I have had so many 'minor' symptoms which were put down to other things eg. sinus, blocked ears, systemic rash, leg cramps/muscle spasms etc., which have now disappeared since treatment. To me, it's amazing and I feel better now than I have felt for a very long time. Good luck with your treatment. I hope it all goes well for you. Cheers, Colleen
IDK about it being a symptom of CLL specifically, it's more of a problem with blood vessels in the head/neck, we have a number of lymph nodes there. Any swelling or movement that can change the blood flow in the head, for any reason, apparently can contribute to this phenomenon. It seems likely our bloodwork would show CLL/SLL before any symptom like this developed, but who knows. The stuff I was reading after I got this symptom seems to think either an ENT/otolaryngologist or a Cardiologist/internist could investigate if it continued or became unbearable. Since I have TMJ issues that have been aggravated lately, I thought it likely it could have been continued jaw movement changing blood flow. Since it's resolving with my CLL Tx, I won't be seeing anyone about it, yay!
I’m glad that your CDs are off to Boston. It’s good that you have scans from the past for comparison. You are definitely in good hands with Dr. Brown!
Re: avoiding gastroscope - a plea to everyone. PLEASE DON’T!!!!! My sister put off her colonoscopy. She is now fighting stage 4 colon cancer. The prognosis is not good. I’ve started following a couple of colorectal cancer groups to try to learn more about what she is dealing with. Post after post tells similar stories of avoiding colonoscopies and / or ignoring symptoms. Many describe symptoms that should have the poster on the way to an ER, but they turn to social media for quick fixes instead, and people are very quick to tell them to “just take” this or that. Colon cancer is a preventable cancer for most of you stay on top of things.
I agree with you about putting off scopes. My aversion is from decades old memories. With the Colonoscopy my memory was something like the Bazooka weapon from old World War II movies. The giant tube like heavy thing the soldier would put on his shoulder. Now I learned that it is a think flexible tube, and obviously not that bad. I also have bad memories of endoscopes and proctoscopes from my early twenties when I used to have stomach problems, so probably those instruments aren't nearly as scary now. In fact I had a colonoscopy around five years ago, so I need another, and it really was alright.
Dr Brown is a true Gem, and I'm very fortunate to have gotten in with her at Dana Farber. I did my homework and read her whole bio. Amidst the few hundred accolades, accomplishments, and stone cold incredible educational accomplishments, I saw one sentence that led to my luck getting in. This one sentence said she had a big interest in CLL and family heredity. I sent an email saying I was the fourth in a row in my family (me, my Father, his Mother, and her Father) with CLL. Now I'm a patient of hers, and I feel very very lucky.
Hi wizzard166, I can't add much to what everyone else has said, other than to say that I too had swishing in my stomach before I started treatment for CLL. I would consider that my diet was good at the time, as I have always been interested in following a good diet, so I didn't know what was causing the problem. I started treatment (O & V) mid December 2020 and I have to say that the swishing in my stomach has gone. In fact I had forgotten about it until I read your post, so I'm guessing it went quite early in the treatment. That being the case for me, I put it down to CLL. I should add that I also thought at the time that my stomach was distended even though a CT scan in October last year did not show any particularly large lymph nodes in that area. My spleen was however slightly enlarged, but my specialist said that everything was still ok and within range. My W & W didn't last too long however as I had a lot of weight loss, a severe rash and other symptoms which necessitated treatment to start mid December. I have been very happy since treatment started and have to say that pretty much all of my symptoms, however minor or major they seemed at the time, have vanished and my blood levels are now excellent. Whatever lymph nodes I could feel at the beginning of treatment, have gone and they went quite quickly. Mind you, treatment will continue for me until next January, so still a long way to go, but so far so good. I hope this helps.
Thank you for the added input on the swishing. Maybe it actually has something to do with the CLL. I hate the feeling it causes, but it is getting me to eat a good bit less. I'm also very leery of eating anything that will be hard to digest and might sit there longer, such as a large bacon cheesburger. I know vegetarian would be perfect, and much healthier, but as a long lifetime meat eater I have too much trouble giving it up. At least I'm about to commit to no more red meat. I like both chicken and fish a lot, and fish is pretty healthy.
Hey wizzard just an FYI...I tried to go meatless long ago when I was young & healthy and became symptomatically anemic. My body doesn't really like iron pill supplements either (although I finally found one that doesn't upset my stomach). So I still eat meat, just not daily/multiple times a day. I mention this in case your hemoglobin or other parameters change for the worse, if you are like me and aren't able to absorb minerals or other nutrients easily. (I had this problem since childhood....was put on 1/2 an adult MVI w/minerals at a young age.)
My father who has CLL, before he started treatment his spleen enlarged also his lymph nodes in his neck got huge like tennis ball sized, after he got on ibrutinib it went away. I think the spleen never goes back to normal size though just shrinks a bit.
I had similar abdominal enlargement and digestive issues when my spleen and lymph nodes enlarged like yours have. All resolved with treatment and remission. I hope your symptoms also resolve. Good Luck. Tony
Before staring treatment for my CLL I think I felt much like you. I had been on w&w with CLL for a couple of years. Then in May 2020 I had a CAT scan for something else and my urologist was alarmed by the size of my lymph-nodes. When I went back to my hematlologist-oncologist, he ordered a PET scan, that showed that all my nodes had substantially increased in size, and recommended I start treating the CLL. The PET scan showed many nodes of different sizes, the largest of which was in the retroperitoneal and mesenteric area measuring 13.6x8.3x19.0 cms. Way much larger than yours! For unrelated reasons I had to wait for three months before I could start the treatment. During that time I started to feel bloated most of the time, and also had a spot in my upper and central abdomen where I could feel something get hard, then rumble and go away. I am sure it was some part of my intestine. I could clearly see that my belly was much bigger al, the time. Once I started the treatment, almost immediately, the bloating disappeared, as did the rumbling in my intestine. My treatment, which is part of a clinical study, is with Inbritinib, Obinituzumab and Venetoclax. It is A014702 (clinicaltrials.gov/ct2/show... & allianceforclinicaltrialsin.... I am on my 6th cycle now and feeling great. I am scheduled to have a new CAT scan in a couple of weeks to see how my nodes are doing, but my hematologist-oncologist says he can't feel them anymore. I don't know if my case relates to yours, but in any event I wish you all the best. I'll try to remember to tell you what the new CAT scan shows when I have it.
I truly appreciate your input, as well as the input from all of you who have been following the post I started. We all can help each other in a way different from our Specialists, but in many ways almost as important for our peace of mind.
My largest lymph nodes are about 4.5 cm now, and they increased from 1 cm or less in 2017. The 2017 CT was the only one the Gastro had to compare to, because it was also taken at Diagnostic Centers of America for that Gastro. When I went to see my Specialist at Dana Farber for the first time last February, after being on W and W for two years, and she amongst many other tests had CT Scans taken from top to bottom. Those abdomen images will tell a lot, with respect to changes that have taken place in exactly one year.
I think I hope that she thinks nothing of it, and she suggests I remain on W and W. I used to think upon diagnosis and placement on W and W, that the concept of W and W was terrible. I couldnt understand why Cancer was invading my body and the doctors feel we should just let it ride; until, it is very close to hurting you badly. Now I understand much better, that the treatment might be more dangerous than the disease; at least, in the disease's early stages.
The other factor in my not wanting to go on treatment, is the cost of treatment in the USA. We don't have National Health, and although I'm on Medicare the Part D Rx program of Medicare is nothing short of an abortion. I should know, I'm a Medicare insurance agent. If I went on treatment today, my first year would cost me $14,000 for Imbrutinib. I gather that if I get on a clinical trial I would get the medication for free, but frankly unproven clinical trials are a bit scary too.
I've been really upset with my abdomen increase, the swishing around of liquid inside my stomach for hours after eating (when I walk), and the overall discomfort now after every meal. I'd bet it is because of huge proliferation of Lymph Nodes, aside from the largest size of each one. The Abdomen CT also mentioned a bunch of lymph nodes in the mediastinal area, and i gather that is in or near the lungs. I asked the Gastro if this could be beginning of lung cancer, and he said it was out of his area of expertise and to ask my oncologist. The CT disc will arrive in Boston Tuesday, so I'm anxious to hear from my CLL Specialist at Dana Farber.
I am on Medicare, but qualified for drug assistance from a drug company directly. We needed the Prior Authorization to be run through my insurance, apparently to ensure I truly needed the medication, but the drug cost never gets sent through Medicare. I get it mailed to me from a pharmacy chosen by the company. Nothing contributes to my Medicare drug costs, no donut hole, no copay.
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Return of symptoms after starting on I & V four months ago
Acalabrutinib is working!
Don't give up just enjoy each day!
