walking problems on Olaparib

[Trickysite]

Does anyone have any suggestions to help walking problems on Olaparib, please? My legs are stiff and are sort As if I have slight cerebral palsy in that I can’t fine control where they are going to land when I walk andthat disturbs my balance, so now I walk with a stick. Am Ithe only one? Onc, says it is neuropathy. I am sure that is right. I don’t have numbness. I have been on Olaparib for 18 months and it is slowly getting worse. I did have similar symptoms on chemo but then it waxed and waned with the chemo intervals. It is a recognised side effect on the Mayo clinic’s list. My legs feel very heavy, too. Before chemo, I was Miss Skippy Toes!

[delia2]

Hi. I definitely felt that way on chemo and the first six months of Olaparib but I went down to 300 mg a day and it wasn’t as bad. I’ve now been off it for two months and so much better! I am back to my old self though still have some neuropathy. It feels wonderful!

[Trickysite in reply to delia2]

I am on 400mg Olaparib as the higher doses gave me anaemia. I have been worried about coming down to 300mg but very pleased to hear from you and that it improved the walking and what's more you are recovering your walking even more after 2 months off Olaparib.

I was nervous my onc might suggest coming off Olap entirely but perhaps I can come down to 300mg. I am small physically so it might be sufficient. I am so pleased you replied. Many, many thanks! Emma x

[Leniko]

I had the same issues w Gemcitibane. Onco says it will pass once I m off it.

[Erinna72]

when I was on Olaparib I had no problems with walking. I am now on a new regime - Yodelis and Caelx- and I have the symptoms you describe . I legs feel as if the weigh a ton! It’s a real nuisance and does not really improve during the break. before the next session. They told me Lyrica may help which I had taken while on Taxol but this time it hasn’t. So …. Sorry I’m not much help. Good luck with it. If Olaparib keeps the beast away that’s a big plus. It didn’t help me for long.

Regards Erinna

[Trickysite]

sorry to hear all that. I do keep walking. I try to do it for an hour every day but it is a real effort and slow. But i have Ehlers Danlos congenital muscle condition too, and ifI don’t waLk will go into long lasting spasm and lose ability to walk. I think it keeps me fairly strong... here’s hoping when you stop the Y and C you will be healthy and get your skippy legs back. Emma x

[MacButton]

I have got exactly the leg problems you described, have been taking Niraparib for over 3 years, although I am sure it is the drug but I am told it is not one of the recognised side effects. My walking has got slowly worse since I started taking it. Isaw a neurologist who said although I have peripheral neuropathy it is not severe enough to affect my walking and lack of balance. I go to an exercise class twice a week? Have not found any treatment that is effective, wondering about trying acupuncture. I am not aware of any trials on long term effects.

[Pianoplayer731021 in reply to MacButton]

Hi there, I was reading your post about being on Niraparib for over three years. My oncologist would like to discontinue my niraparib in July, which would be the three year marker. I have had side effects such as shortness of breath due to low hemoglobin and UTIs that have bothered me while taking this drug. I will be 77 this year and I was Stage 4 high grade serous ovarian cancer when diagnosed. I was just wondering why your oncologist wants you to take this longer than three years. I was also on the 100 mg. dosage. I thought that three years was the limit on it. Just curious, thanks; Donna.

[MacButton in reply to Pianoplayer731021]

I have an appointment with my Oncologist next week so will ask the question. There has not been any suggestion that it should stop.

[Pianoplayer731021 in reply to MacButton]

ok, there might be different protocols for everyone. Thanks for replying Best wishes, Donna

[Pianoplayer731021 in reply to MacButton]

Hi again, they might discontinue this drug if you have too many side effects that can harm you. I had one blood transfusion, but I bounced back. The only problems I have had lately are constipation and too many UTIs. My hemoglobin is low, but not bad enough for another transfusion. I believe the nurse said that I will be off from this soon. Niraparib is a wonderful drug to keep cancer cells at bay. Wishing you well, Donna

[Trickysite]

I find the Mayo clinic website lists more side effects of drugs than the English ones, so I would try that. Olaparib gait probs are listed on it. My Marsden onc said my walking issues are definitely neuropathy although I have no numbness, just gait probs which produce loss of balance. So, perhaps your neurologist was not so brilliant......I have found a physio clinic in London where they say they have specialist physios for CIPN (chemotherapy induced peripheral neuropathy), if you are interested to know the name. I will ask my onc about this clinic and acupuncture and reflexology at my next check up. It is nice to know one is not the only person but I wish you didn't have it! Emma x