CLL Symptoms

[Anzac49]

I was diagnosed with CLL 20 years ago and been on a watch and wait program, last August I had a CT Scan and it showed the Spleen was enlarged by 17cms and glands above aand below the Diaphragm were enlarged, then I was sent for a radio trace scan which confirmed that some lymph glands are enlarged, in December I developed lumps in the neck and also started to have to go to the Toilet as I developed the Runs all of a sudden

I saw the GP who ran tests for infection and bowel cancer all tests came back negative I was put on a tablet to stop the runs, these work, now I go to the toilet and everything is fine and after a couple of days I go to the toilet and the stools are loose then I don't need to go for up 2 days

also yesterday I have found a swelling in the gland under my right eye

my question is if anyone else is having or had these sort of symptoms

my Consultant is waiting for me to develope night sweats, loose weight , loose my aappetite

[MisfitK]

How's your bloodwork trend?

[Anzac49 in reply to MisfitK]

Thanks for your reply, blood results from February, white cell 44.9, haeglobin 143, platelets 123, lymphocytes 40.3, neutrophils 3.6, monocytes 1, B12 372, folate 8.4I also have been treated for Haecromatosis since 1984

Regards Anzac49

[MisfitK in reply to Anzac49]

Is that going up, or has it just sat there the last few years...and how's your weight trend been?

And how are you feeling? I see a lot of symptoms above and some seem life-affecting possible, but maybe not life-affecting yet for you.

This is a long way of saying...maybe you need to get in a treatment mindset within the next month or two...or maybe you can push that off another year or two. But with the spleen at 17cm and lymphs enlarging around it, I'd want more oversight if I was waiting that year or two (like appointments every 6-8 weeks where the spleen size is at least physically checked). And I'd want my weight and blood work to have been pretty consistent, and not sharply rising (blood) or sharply dropping (weight).

[Anzac49 in reply to MisfitK]

The trouble is that every 3 months I am bled for the Heamacromatosis, a transfusion bag is filled, I don't know if this is keeping my levels out of kilterI haven't lost weight, but I am getting very tired

It's the same medical team looking after the CLL and Heamacromatosis,

I haven't been bled for 7 months as they have decided to bring my ferritin level up

Regards Anzac49

[MisfitK in reply to Anzac49]

If you're also adding increasing (and possibly debilitating) fatigue to your symptom list, I'd probably lean even more into the "it's time" camp and start adjusting my thinking to what the best treatment going forward might be.

[SofiaDeo in reply to MisfitK]

Yes, "fatigue" is a reason to treat. Regardless of any lab value or measurement, once you get the diagnosis. If the fatigue is impacting your daily life, please start looking at treatment options.

[Vlaminck in reply to SofiaDeo]

If going on fatigue alone, do first rule out epstein barr, may I suggest, as you will know no greater fatigue that what EBV can cause, and you can have both. In fact, many of the symptoms of EBV are the same as CLL. Simple blood test will tell you.

[Anzac49]

Thanks for your reply, The latest Blood results are from February, white cell 44.9, Haemaglogin 143,

Platelets 123, Lymphocytes 40.3, Neutrophils 3.6, Monocytes 1, B12 372, Folate 8.4

I also have been treated for Haecromatosis since 1984

Regards Anzac49

[SofiaDeo]

Your spleen is enlarged *by* 17cm, and is now around 22cm, or enlarged *to* 17cm? More importantly, if any of these enlarged intenal nodes are in your abdomen/bowel area, it's possible *they* are triggering the diarrhea. If any node is stimulating peristalsis such that you are getting diarrhea, IMO it's time to treat. Not everyone with an SLL presentation, which yours seems to be, will get night sweats etc etc.

There is al least one person here who was diagnosed with an IBS and was considering IBS type surgery. Treating the CLL stopped the IBS type symptoms. They also have enlarged internal nodes.

[LeoPa]

As far as loose stools go can it be food related? Did you eat anything you did not eat before? Food intolerances can develop as we age. How is your diet? Can you improve it?

[Tangolover]

When my lymph nodes enlarged in my neck and upper abdomen, my doctor recommended treatment when they started to bother me. At first, they were just unsightly, but when I started to have more trouble with swallowing and they became somewhat painful, I began treatment. I also started taking daily fiber which helps with loose stools.

[bennevisplace]

Hi Anzac

- I saw the GP who ran tests for infection - What tests?

- I was put on a tablet to stop the runs - What tablet?

I have been having those symptoms, no obvious cause, tried Imodium with those results. Now lab tests pending, will let you know. My GP says most gut infections are viral rather than bacterial and antibiotics often make the problem worse. Most folks' gut infections clear within 10 days, but ours can run and run 😬

[Anzac49 in reply to bennevisplace]

HI, I was given Imodium Tablets, they dried me up for a few days, then I started to go normally then after a few weeks the runs started up, take the tablets and it dried up again for a few weeks and it starts up again, the last time I took the tablets it stayed normal for a couple of months the It went to loose movements 3 days apart, I haven't been for nearly 24 hours, even thought the consultant was hinting at being tested for IBS

[bennevisplace in reply to Anzac49]

I see. Have you been tested for a GI infection? They could test for inflammatory bowel disease (IBD) on the same sample, though infection would be a more common explanation.

[bennevisplace in reply to Anzac49]

Update: my stool analysis came back "normal, no action required". Hunky Dory right? Wrong!!!

Lab tests for several common bacteria were all negative. In the meantime my diarrhoea has significantly worsened. It had come on suddenly with no obvious trigger. No other symptoms. I have no history of GI issues other than intolerance to gluten, long excluded from my diet.

Diagnosis: viral GI infection.

Treatment: hydrate, rebalance electrolytes, monitor temperature and weight.

Prognosis: Without CLL, back to normal in <2 weeks. With CLL, who knows - weeks? months? Could abate and resurface later?

[SofiaDeo in reply to bennevisplace]

Maybe consider adding some coconut oil to your diet. I know there's preliminary positive data that it disrupts Covid viral membranes and decreases inflammation. I know it helped me with my Candida gut overgrowth. It also can affect bacteria, with some of our good bacteria liking it so it helps these good guys proliferate. So a low grade type infection might clear faster. Of course since it's saturated, you have to watch your intake. You would want organic, expeller pressed; avoid solvent extracted oils.

pubmed.ncbi.nlm.nih.gov/340...

pubmed.ncbi.nlm.nih.gov/342...

There's a US company that I do bulk purchasing from. I use it on my skin, in my dogs food, as well as for my own oral ingestion. It's super expensive to get a small jar at the local grocery, or even a Whole Foods, IDK who sells quality bulk in the UK/EU. I buy it in 1 gallon or 5 gallon buckets, and it's available on Amazon here although I buy directly from the company.

If you don't like a "coconut" taste or smell, an expeller pressed oil that has been steam deodorized will be bland & neutral. My husband does not like coconut At All, so I get the deodorized oil.

Another option would be, can you get fresh young coconuts imported locally? The water and gel inside are fantastic for health, as well as the meat. This would be a way of getting all the benefits of coconut/coconut oil, getting one every few weeks. I love fresh coconut water, it contains a lot of electrolytes and the gel is yummy. Fresh coconut meat does not taste like anything out of a bag of shredded coconut, I eat pieces as snacks. It's been much harder to find since I left Florida, but they do show up occasionally, like fresh pomegranates, and I get them when they do.

[bennevisplace in reply to SofiaDeo]

That's thoughtful of you Sofia, thanks. It wouldn't have occurred to me but I will give it a go once I get home from Berlin. I enjoy anything coconut (coincidentally, used the oil in a stir fry on Monday, I think it's the pressed variety).

Fresh coconuts yes please. Maybe I'll see if Necker Island is available for April 🤑

[SofiaDeo in reply to bennevisplace]

Then that's settled; you Must get to a tropical island soon, for your health....um I would love to join you there, if you plan on renting the space a while and want company hahahaha

[AnneHill]

You are concentrating on bowel problems but the cll is more important. I was diagnosed in 2001 with very small numbers. Things started to change after 8 years but I was only tested again after a further 12 months.The doctors were shocked when they went from 48 to over a hundred. Scans showed my spleen was enlarged and all lymph nodes from my neck to my groin were enlarged. I was told I would need treatment.

During the time I was having scans booked and appointments made, my numbers were rising quickly and my spleen was getting larger.

My spleen pressed on my stomach and I could only eat small meals and I lost weight.

You are following a similar pattern. If that is the case you will need treatment in the next few months.