This is my first post. Prior to this I have been a lurker. I feel embarrassed talking about my cancer with friends and family. People ask me how I am--or how I feel-- and I don't want to start. I don't want to be one of those people who is constantly whining about their health problems.
I was diagnosed with stage 3 CLL a bit over a year ago. My lymph nodes were swollen at the time in my neck, armpits and lower legs. After initial chemo--and now Ibrutinib--the swelling is mostly gone except for my ankles. There is no pain just huge swelling that makes wearing even the largest socks almost impossible. There is no pain and no circulation problems. They are just really big and ugly and prohibit my wearing of shoes, especially when coupled with large calluses on the sides of my big toes.And my feet are dry with cracking/splitting on the heels and sides every couple of weeks. I go for a week or more without wearing shoes and yet the moment I wear them the pain and problems are back. I haven't seen anyone else complain about this problem. Anyone? Ankles, toes?
Oh yes, my doctors all feel them and ask about them, but haven't offered any treatment or encouragement.
Written by
ptprism
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The problems you mention don't sound CLL related. The swelling in your ankles could be caused by poor drainage of lymph from your lower legs called edema or possibly lymphedema: en.m.wikipedia.org/wiki/Lym...
Your doctor should be able to help you with a diagnosis and tips on how to prevent the fluid build-up, which could include suggestions like more exercise, massaging your lower legs and keeping your feet raised when possible.
Your foot calluses and dry splitting heels would best be managed by a podiatrist, who would probably advise you on how to moisturize your heels and help reduce the discomfort by removing the dry/dead skin. Have you ever been referred to a podiatrist?
I would take up Neils advice and put the ball back into my GPs court.
Tell them ( again ) about the problems that you have, put him/her on the back foot by asking if this could be related to poor drainage/ lymphedema ... suggest that a referral to a podiatrist might be of some use for the splitting/cracking of your heels.
I'd ask if the likes of O'Keefs skin cream would help or is there a better medical treatment that they could recommend.
Split/cracked heels are painful ... my mother had a bad split in her heel for ages that would not heal despite treatment from her GP. A pal of my dads was an ex boxer who said that they used to have this problem with their hands ... the remedy was to take some porridge oats ... soak and stir them in COLD water ... drain the oats and bathe their feet in the 'milk'. She thought why not ... it worked a treat.
I'd ask if it could be lymphedema related ... suggest a cream treatment ... and ask this question ... would the oat milk be safe to use with your suppressed immune system ?
Drop the ball in their court, and ask for help ... you've got enough to put up with without this.
Excellent advice from Neil and Ygtgo there ptprism and I must admit when I read your post this morning I went 'ouch' too! This must be agony for you and perhaps the doctor and others are so used to you being independent and not complaining that they're letting you get on with it. You need to be stressing that this is a major problem which must be restricting your mobility massively.
Just a little thought too...you're not diabetic are you because this could exacerbate foot healing tremendously if you are. Just wondered if you'd been checked out.
Hope you can have this resolved soon but on this occasion, this isn't whining or complaining, it's time for them to look after you better because this condition sounds miserable and painful. You need to be referred to medics who can help if they can't.
Best wishes,
Newdawn
I had trouble with swollen ankles and lymphedema. The GP gave me Furosemide (water pills) which makes you get rid of excess fluid. I was told to reduce salt intake as well. This really helped together with a little massage. He asked me to contact a cardiologist to see if the swollen ankles had anything to do with possible heart problems.
Dry and cracking skin on the feet can be helped by applying a good moisturiser every day, unless it is caused by a fungal infection. In that case anti fungal ointment they sell for athlete foot is good. Both treatments helped me in the past.
Toe nails are another problem and they are affected, just like nails on the hand, by ibrutinib. My big toe nails became badly infected, two of the smaller ones fell off, and only after several visits to a podiatry clinic was the problem resolved.
i agree proper medical advice from a podiatrist is the best idea. i'll also mention polysporin ointment can provide some relief for heel cracks. and that oatmeal solution is intriguing.
Have you been prescribed a diuretic? I am 17p and have been on Ibutinib for one year, and also Metoprolol . I was prescribed hydrochlorathiazide because of swelling...ankles, feet, and even hands, a side effect of both drugs My ankles and feet after attending a conference and being on them all day, a few days in a row were so swollen I could not get shoes on for 3 days . I am totally confused. According to the imbruvica instructions, one must drink plenty of fluids...but then, I take the hydro...a diuretic. The swelling seems to come and go. I have been faithful to the hydro (which in the beginning, or when I go off it a few days causes severe leg and foot cramps) and my feet and ankles are totally normal...no swelling. My uric acid levels are now high which has been blamed oh the hydro. I am now having some pulsing in my calves, and my CLL doctor is concerned about some small lumps in my calves. I will see him again in two months . I will see my primary care doctor in a few days and see what he has to say about all this. I would prefer not to add a drug to control the uric acid.
I have cracked feet and fingers as well, and have had tremendous success using O'Keefe's Working Man's creams. I buy both the cream for the hands, and the one for feet. Both are available from Amazon and most local pharmacies. It took a few days to see results, but I am mostly fine now. I also have brittle and split nails. I find that by keeping them as short as possible I have fewer problems.
Thanks to all for your suggestions. I have met with my primary physician and she has scheduled an appointment with a podiatrist and also a series of x-rays to be completed before the appt. Also, discolorations under a couple of the nails on my right foot could signal possible heart problems she wants to watch. All in al, I feel better after getting good information from the group and being able to get worthwhile response from my physician
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