Does CLL make your lower legs swell ?

[NannyDe]

I have had ultrasounds on my legs this month for severe swelling from knees down. Everything keeps coming back normal . Could CLL do this ?

[GMa27]

I have never heard of that description being CLL related. You mentioned severe swelling. Does the swelling ever go away? Does your hematologist or doctor that ordered ultrasound think its lymphodema?

Are you in pain? Are you having treatment for CLL? Ultrasound should have shown clots if they were present. Your PCP should recommend a specialist to figure out cause. So many conditions can cause that from kidney to heart to more simple explanations. 🙏💕

[annabelle63]

Never happened to me.

[Shedman]

Have you any history of kidney problems, or UTI’s (urinary tract infections)?

For instance, I had a bad UTI/kidney infection.. it turned out that CLL cells were producing malformed gamma globulins, and these were clogging my kidney nephrules/filtering..

The key symptom after antibiotic treatments, was continued frothy urine: proteinuria - loss of protein in my urine..

Certain proteins in the blood influence clotting / blood ‘thickness’

I suffered with oedema, which usually affects lower limbs worst, and left lower leg worse than right due to how the main vein cross higher up.. clearance of left leg vein is slightly worse.

Is your urine frothy?

Important to pursue this with your primary care doctors to resolve any infection, and to keep pursuing aspects that involve frothy urine with your CLL team as necessary.

Diagnosis of my CLL involvement required a kidney biopsy.. it showed that my CLL treatment was urgent — CLL treatment led to a gradual resolution of the oedema and gradual improvement of the proteinuria.

[NannyDe in reply to Shedman]

This is quite interesting. I will mention it to my doctor and see what he thinks. Thank you

[Shedman in reply to NannyDe]

A key detail, is looking for froth in your urine, or, better, measuring level of protein in your urine.No doubt there are other differential diagnoses in relation to oedema, such as of heart function.

[dougstalbans]

My left leg has been swollen when not lying down. Especially behind the knee. The doctor wants to see me next month and I will also have blood test for CLL next month and phone appointment with haematologist. The doctor thinks it is probably a bit like varicose veins and not CLL related but I am not sure. It’s all happened since second Covid jab which may be coincidence or not. I am on watch and wait since 2015. The leg is a bit uncomfortable but I tend to forget about it while working.

[goldstream]

NannyDe, I have swollen lymph nodes in my right groin. In addition I have experienced Lymphedema (blocked lymph vessels) in the same location which causes swelling in my lower right leg, ankle and foot. I dont have 'severe' swelling, but I know it can result in this. Possibly something else to explore.

[DelrayDave]

This sounds to me like edema. I had it after a few years on ibrutinib. Lower legs, ankles, feet, and lastly arms. I had this for maybe 3 years. It was one of the reasons I was switched to venetoclax 3 months ago. The edema is now greatly reduced, almost gone. There is still a bit in the feet but by measurement the calves of both legs are down 2 to 3 inches and the arms are normal. Lost about 15 pounds, some of which may have been from nausea caused by venetoclax, which has also gone away after 3 months on the drug. Weight is now stable. Also afib is gone and arrhythmias are far fewer. Finally all neutropenia is gone and blood numbers are closer to normal.

As for kidney issues the creatinine is high, anywhere from 1.5 now to 1.8 a month ago, usually closer to 1.5. That also started on ibrutinib after a few years on that drug. Highest was 1.9. Urine is frothy. Nephrologist tells me everything is stable and no kidney treatment is needed.

Your case may be different, of course, but if you are on ibrutinib that may be the cause.

David

[Dragonspen]

I'm the same as David. Once on Ibrutinib the swelling in my lower legs started. As soon as I put my feet up or first thing in the morning they are back to normal. I try and get rid of as much fluid in the body during the day as possible. I can drop upto 3kg when things are reduced to a normal size.Best wishes to you.