Leg and hand swelling

[GerryPL]

I have SLL and eighteen months ago I finished a successful twelve month treatment of O+V. In the last 12 months I have noticed first my legs and secondly my hands have become very swollen. I know that SLL targets lymph nodes and just wondered if others have had a similar reaction. I'm seeing my Haematlogist next week and any similar histories would be welcome for my conversation.

[JerrysGirl3]

I have CLL, AML, TPLL and MPAL i just started chemo treatments (azacitidine infusions and venetoclax pills) have noticed since my first infusion, my ankles are always swollen (not so bad to pretty bad) sometimes my lower legs or top of my feet feel swollen as well. I haven't been able to figure it out either. Please give feedback at doctor visit or I will as I see hema on Thursday and will mention it as well

[GerryPL in reply to JerrysGirl3]

thanks for taking the trouble to reply, I'll post how I got on with the Haema next week

[JerrysGirl3 in reply to GerryPL]

Thanks 😊

[LeoPa]

Are you retaining water? Any kidney or blood pressure problems? They should check your kidneys and heart. If the swelling is caused by water retention, you will probably receive diuretics.

[GerryPL in reply to LeoPa]

thanks for taking the trouble to reply, I'll post how I got on with the Haema next week

[Georgiecat]

Hi GerryPL

I had the same issue after 2+ years on Calcquence (Acalabrutinib.). My hands and knees suddenly became swollen and painful. .

My CLL specialist had me pause Calquence and prescribed an oral steroid for a week. The swelling resolved, and I’m now on a half dose (one pill a day instead of 2)

She said she’s seen the swelling reaction happen to other patients. I know we’re on different meds, but maybe there’s something about the end result of decreasing lymphocytes that causes a reaction.

I hope your hematologist can help you!

Paula

NY, USA

[GerryPL in reply to Georgiecat]

thanks for taking the trouble to reply, I'll post how I got on with the Haema next week

[McBuster]

I had terrible swelling in my legs/hands immediately after completing the 12 months of O+V. They still are not sure of the cause, but think it was chemo toxicity (was sent to rheumatology). I went on high doses of prednisone and as I weened off, the swelling would return. They then added sulfasalazine to the mix, completely weened off prednisone (took 5 months). I took sulfasalazine for a year and slowly weened off. All is good now. Wishing you all the best.

[Bobby9toes]

I also have SLL. I was diagnosed in January and have been on a different treatment than you. I’m taking one Calquence tablet a day. I was told during my last visit to my oncologist that I am now considered in remission but will need to continue with the Calquence for life to keep it from coming back. I have not experienced any swelling yet and hope it won’t present itself in the future. Ask your doctor about it. It may sound contradictory to your swelling, but maybe you aren’t drinking enough water. I hope you can find an answer. Jan

[JerrysGirl3 in reply to Bobby9toes]

Yes I've heard that about not drinking enough water causing swelling ...

[Poodle2]

My mum suffers with leg and arm swelling a lot (she doesn't have CLL). She has had all sorts of tests done, rheumatology, cardiology, etc. They didn't find anything that could be causing it. She has tried all sorts of medication but the thing that helped her was lymphatic drainage which was suggested by her dermatologist and this actually really helped. The swelling came back after some time but she will now have it done yearly. It's a course of daily treatments for a month I think. Attached a photo of what it looks like.

Lymphatic drainage

[GerryPL in reply to Poodle2]

thanks for taking the trouble to reply, I'll post how I got on with the Haema next week

[GerryPL in reply to Poodle2]

thanks for taking the trouble to reply, I'll post how I got on with the Haema next week