[tbar15Participant]

Hi,

I was wondering if anyone else has experienced the above in either themselves and or a patient and if so does anyone have any treatment/ alleviation tips? It is really affecting my Dads ability to walk and therefore quality of life so any thoughts would be incredibly welcome,

Drugs my Dad is on: Dexamethasone (now being stopped/ severely reduced), Ixazomib, lenalinomide.

Thanks,

T

[ree2112Participant]

I had terrible swollen legs the other week. I mentioned it to the haematology doctor who I was having a telephone appointment with, and was told to get in touch with my GP.
I couldn’t get an appointment to see him but the surgery sent me a link to send photos to ready for the next morning when I might be able to get a call back. Anyway, he did phone me the next day and looked at the photos his reply was @oh my. Dear o dear’ I explained to him that it hurt to walk and I’d been in bed with my legs raised etc. He asked if I had seen my CNS which I haven’t since August last year. He told me that she should stay in touch every 4 weeks and if this happens, compression socks can be ordered. I’m on strong water tablets and still manage to swell.
I hope your dad is feeling better.

[aburke53Participant]

I’ve had swollen legs on two occasions. The first time was an early sign of DVTs (if only I had known, early intervention may have alleviated my short term and longer term problems). I ended up in hospital for 2 weeks with full blown clots on the lungs and legs. The second time was the onset of peripheral neuropathy which was/is horrible. My advice is to be your own strong advocate and push your medical teams to get to the bottom of it.

[Author]

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