leg Pain 18 months on: Hi all. So this time two... - My Ovacome

My Ovacome

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leg Pain 18 months on

Craftyclara profile image
10 Replies

Hi all.

So this time two years ago I was in hospital recovering from a TAH and removal of the tumour. I was diagnosed as 1c mucinous ovarian cancer and needed 6 rounds of chemo because the bloody Tumour started rupturing a couple of days before surgery.

After each chemo I suffered excruciating leg pains from hip to ankle that would last 4 or so days and no amount of pain killers would touch it. Even now I suffer really bad aches and pains in my legs and ankles and feel that they are really weak. Walking helps reduce the pain but if I sit down or when I get up in the morning my joints are really stiff and painful. I was on carboplatin and taxel. Does anyone else have experience of this many months later, I sure wasn’t like it before chemo. Thanks so much in advance.

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Craftyclara profile image
Craftyclara
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Lily-Anne profile image
Lily-Anne

I believe Taxol causes the pain. I was told by my CNS that if I did suffer with joint pain there are drugs available like gabapentine so definitely worth a visit to the doc

LA xx

Irisisme profile image
Irisisme

What LA says, Clara.

I think chemo weakens our bodies and makes us vulnerable. After Carbo & Taxol, when I was just on Avastin, I saw a rheumatologist who confirmed early onset Osteoarthritis.

Don’t accept pain as inevitable, seek help. Demand better pain management.

I hope you find relief,

Iris xx

bsooner profile image
bsooner

Yes 2 1/2 years Ned and I still have pain and weakness in my legs. I had taxol and carbo followed by taxotere after taxol was causing neuropathy and I had a severe reaction to the taxotere. I’ve had all sorts of tests, acupuncture, and physical therapy. I do take gabapentine which helps the shooting nerve pain but doesn’t help the muscle weakness and soreness. I can’t walk or stand for extended periods of time like I used to be able to do. I have been using cbd oil the past year which has helped. I tried the cbd oil with thc 4 months ago and I have improved. Unfortunately the state (USA)I live in doesn’t have it available yet and I have to travel to another state where it is legal to get it. I wish you good luck! I hope this isn’t our new normal.

Pigletokeeffe profile image
Pigletokeeffe

Hi I’m almost 3 years Ned from stage 2 epithealeal , having had 6 Carbo taxol and also have pain issues in my legs feet and hands. I have had various tests for arthritis and nothing show up. I walk and cycle every other day and it helps me remain flexible but some days I am very stiff and in pain wether I walk or rest. I have anti inflammatory tablets that I take for a few days when I’m like that and it seems to calm things down for a while. So I think we just damaged by the chemo and have to find a way of coping to keep ourselves moving. Get out whilst the sun shines, housework can wait has been my motto for the past while. Making memories whilst we have some good days to enjoy. Hope you find some relief for your pain , as it can be all consuming if you dwell on it..

Craftyclara profile image
Craftyclara

What a fabulous bunch you are. Thanks so much for the replies. The sun has been shining a lot where i live so have been walking a lot and swimming in the sea both of which help. Wishing us ALL lots of sunshine and laughter X

govanhill profile image
govanhill

Hi I have had several rounds of chemo since diagnosis and surgery at the end of 2007. I have constant muscle pain in my legs and ankles particularly when I have been sitting and start to move. Presume it is from the chemo. I find it gets better when I move around. I take paracetamol although it doesn't do much. Morag

bamboo89 profile image
bamboo89

I've been scrabbling around unsuccessfully looking for the piece of paper I wrote the information down on... someone on here (Lily-Anne? Kryssy?) mentions peripheral neuropathy and pain as a result of chemo, and she took l-glutamine and ALA (alpha lipoic acid) supplements which were much better and infinitely more effective at reducing those symptoms than any painkillers. I believe her husband bought them for her, so that's definitely worth some research, because paracetamol is ineffectual, and I never found gabapentin helped much either. Certainly, ALA is often taken by people with diabetes who have nerve damage caused by diabetes to reduce their peripheral neuropathy/pain (as well as contributing to blood sugar control).

The stiffness some of you describe does sound like osteo arthritis, that business of being still and then being very stiiff when you try to move is very familiar to me - I've had that for some years, and was warned that chemo (especially taxol) would make it worse, and that it may even trigger it in people who don't have it already. I never had chemo in the end, so I don't know what effect it might have had on the osteo arthritis, but I do know that I get a lot more cramp in my feet and legs since the surgery - it's always been an issue because of my arthritic lumbar spine. I imagine its being worse might be down to abdominal muscle weakness, meaning my lower back is less supported, and that will cause more weakness, nerve pain and general symptoms down the legs. I'm considering trying ALA myself to see if it helps, but not sure it will in my case because I don't have peripheral neuropathy, but for you guys who have had chemo, I reckon its definitely worth a try.

Petrolhead profile image
Petrolhead

Hi CraftyC

Similar to you stage 1C mucinous. Had op in 2016, finished chemo May 2017. I went on Pregabalin ( I think it is better than Gabapentin) for a couple of months to help with the electric shock pains. I decided to stop after a couple of months and pains were very much Less occasionally I get them now.

I am still stiff in the mornings and when I have been sitting for a while. It is getting better but very slowly. If you think that nerves only regenerate 1mm per month then it will take 2 years for one inch to regenerate.

My leg strength slowly coming back.

Best wishes Fay

Lindaura profile image
Lindaura

I am suffering the same way, but only 5 months from treatments with Carbo/Taxol.

I can now get up from the sofa, pretty easily, when last month I had to get help! It was also really difficult to get out of the car.

I still get very winded walk-in up the slightest incline and if I am on my feet too long (30 minutes) I begin to get that weird buzzy feeling in my legs and start feeling weary.

I suffered fri the bad bone pain from ankles to hip joints during the first week of each round of chemo and was totally wiped out by the chemo in general, so I did not get much exercise for the 7 months of treatment.

Consequently, I am a little slow recovering, but I think the Taxol does leave us a lot weaker.

BTW, I just started taking Ibuprofen again as soon as treatment was over, for the joint pain and it still works.

Best of luck,

Laura

After my recent experience with hip pain, I would look for an mri, I discovered my hip pain was from a tumour on the hip muscle. I don't want to frighten anyone but if in doubt see your gp

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