Leg Pain

[SuSue]

Hi everyone just wondered if anyone has suffered leg pain whilst on carbo/caelyx. I'm on a trial drug plus the chemo and I did read that caelyx can cause a build up of uric acid and lead to gout. My leg from the knee down round the ankle and into the toes was extremely painful and kept me awake during the night. Any tips on relief of the pain or foods to eat or not would be greatly appreciated

Thanks Sue

[Hidden]

Hi Sue. Which trial drug are you on? I was on Carbo/Caelyx/Avastin - no leg pains.

Best wishes. Pauline.

[SuSue in reply to Hidden]

Hi Pauline the trial drug is Pisarro or AP246 which is a 6 hour infusion each day for 4 days and the last day carbo/caelyx. The pain is much worse when walking and actually brought tears to my eyes earlier today when I gone out to buy a birthday card. I've had it checked to rule out a DVT so thankfully that's was ok. I'm only allowed 2 paracetamol in 24 hrs which quite frankly doesn't even touch the sides xx

[Solange]

Sue, I wonder whether you could have a DVT - Deep Vein Thrombosis. I think it would be worth getting checked out quickly, just in case.

Hope all goes well for you, love Solange 😊 Xx

[SuSue in reply to Solange]

Hi Solange

Took your advice and got DVT ruled out. The pain is much worse when walking so much so I was nearly in tears when I went out to get a birthday card. As I am on a trial drug the only thing I can take is 2 paracetamol in 24hrs which as I mentioned in a previous post doesn't even touch the sides. Thanks for your advice xx

[Solange in reply to SuSue]

Hi Sue. Glad not DVT. I have heard of people putting Epsom salts in bath and being helped by a long soak in it. Afraid I'm not sure how much to put in though. Maybe someone on here could advise you? Hope pain sorted out soon. Maybe you are allowed a different painkiller and GP could prescribe something different, but allowed on the trial. Xx

[Katsmum]

Hi Sue

My first line chemo was carbo/taxol with avastin and after the second or third dose I had really bad pains in my feet mostly which kept me awake. The gp gave me codeine for when it was severe. The skin on my feet completely peeled which was quite bizarre but not painful in itself. This only happened once so I have no idea why. Two years on I am having carbo/caelyx and the second week following treatment I have swelling of the feet and ankles with a rash which apparently is a possible side effect and the consultant suggested asking the gp for 'water tablets' if it's troublesome. I know this probably doesn't help but the treatment affects us all differently and I would speak to your cns about it as hopefully it will be a temporary thing and they can suggest something to help. Hope your treatment goes well and has the desired effect. Best wishes

Jane x

[SuSue in reply to Katsmum]

Hi Jane

Thanks for your reply yes night time is the worse I got up because I couldn't stand the pain any longer and my entire leg was completely dead. The pain feels like a mixture of severe cramp and sciatic pain felt like chopping my leg off earlier rather extreme I know but we're all taken to these extreme places from time to time xx

[Katsmum in reply to SuSue]

Yes I know what you mean!! One other thing - I have been getting cramp all over the place, hands feet etc and have low magnesium levels because of the chemo. Now on magnesium supplement which has really helped and I already take gabapentin for restless legs which is a similar thing to pregabalin I believe. Good luck with finding a solution x

[Chezp]

I have been prescibed Pregablin for this same pain, which I start the day before chemo and continue for a week, also bought an electric heat pad which does help.

Upped my potassium level too..

Keep smiling as best you can x

[SuSue in reply to Chezp]

I might see if I can have that prescribed whilst being on the trial. Thanks for your reply xx

[Yoshbosh]

Hi Sue,

I hope you have managed to get some relief from the pain by now (without chopping your leg off!)?

I've just been presented with the Pisarro trial as an option for my second line treatment, and I was wondering how you have found it so far? Have you had any indication of how well it is working? I'm weighing up whether to be put forward for it because the hospital I'd be treated at is 50 miles away, and I'm not sure about the daily visits for the trial drug if I were to be randomised to that arm.

Thank you,

Vicki

[SuSue in reply to Yoshbosh]

Hi Vicki

Still got my leg (just about) turns out it is nerve impingement from a dodgy disc. I went to see a physio and he said he was pretty certain it was that. I don't think it helped lay in funny positions on the bed for 7 hrs a day for 4 days. It's hard to say about the trial drug as I've only had one cycle the side effects kicked in pretty much straight away (dizziness,headache & nausea). Are you going to the Christie I'm fortunate I only live 7 miles away but I was talking to a lady who lived a similar distance as yourself and the drug company paid for accommodation for her she said she had been to the premier inn but then managed to get a house nearby through air b'n'b. They are long days so this could be a good option for you. Please do not hesitate to contact me if you need to know anything else

Sue x