Leg pain and Taxol: I'm on 3 weekly taxol with... - My Ovacome

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Leg pain and Taxol

doodoolatrice profile image
21 Replies

I'm on 3 weekly taxol with 1 week off and this is my week off and I'm still feeling absolutely awful. Not helped by the fact I've got really bad catarrah and a cough. Last night i woke up with horrible nerve pains in my legs. The pain was awful to the point I didnt know what to do with myself. Co-codamol didnt touch it so i topped up with ibuprofen which took the edge off eventually. I'm definitely going to ask for a dose reduction next week as this is all just too much so i was wondering what sort of difference this will make and also what pain killers do people take for the leg pain, Kerry

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21 Replies
Lovedogs41 profile image
Lovedogs41

hi I was prescribed pregnabolin for leg pain it did really help but made me feel quite spaced out.also you could try taking clarityn antihistamine everyday that you can get from supermarkets etc I found it helped xx

doodoolatrice profile image
doodoolatrice in reply to Lovedogs41

Thank you, I will ask about Pregnabolin x

Artgreen profile image
Artgreen

I take Claritin every day and still get random leg pain. But I think it’s less than without the Claritin. Feels like stabbing when I walk in the inner thigh. I think it’s muscular though because after a few weeks it moves. CBD oil seems to help too.

doodoolatrice profile image
doodoolatrice in reply to Artgreen

Thankyou Artgreen, ive heard of clarityn before so im curious to know how it works with this awful merve pain. X

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Hi Kerry

Thank you for your post. I’m so sorry to hear how awful you’re feeling at the moment and that you’ve been experiencing horrible nerve pain in your legs. I can see that some members of the forum community sent replies which I hope you have found helpful.

You mentioned in your post that you are speaking with your clinical team next week about this, but I wanted to encourage you to get in touch with them before next week, so that you can access some personalised medical advice and suggestions of ways to manage your symptoms. You could call your clinical nurse specialist for guidance or contact your 24/7 chemotherapy helpline number for assistance. I really hope this will help to manage the pain you’re in.

If you would like to talk through anything with a member of the Ovacome support team, please don’t hesitate to call our support line on 0800 008 7054, email us via support@ovacome.org.uk or send us a message through this forum if you prefer. We’re here Monday – Friday, 10am – 5pm, to help with questions or just have a friendly chat. We can also support you to prepare for any upcoming appointments if you think this could be useful.

Best wishes

Annie – Ovacome support

doodoolatrice profile image
doodoolatrice in reply to OvacomeSupport

Hi Annie, many thanks for your reply. I thought i had responded to you but my reply seems to have disappeared !! I did ring and speak to one of the CNS and she was so understanding. I explained everything to her and she agreed that something needs to be done as i can't carry on like this and she would make sure i was discussed at the Team Meeting on Monday before treatment on Tuesday. In the meantime any more problems to either call her back or the chemo hotline. I'm so glad i called now so thankyou, kerry x

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply to doodoolatrice

Hi there Kerry

Thanks so much for your reply and update. I'm really pleased to hear that your CNS was understanding and that you will be discussed in the team meeting before your next treatment tomorrow. I hope your clinical team offer some effective suggestions to help manage the pain you've been in.

Please do let us know if you would like to talk through anything or if there's anything we can support you with.

Best wishes

Annie - Ovacome support

Lyndy2 profile image
Lyndy2

I did not know (until I got horrible bone pain) that there are several strengths of co codamol. A lovely nhs motorcycling nurse dropped some off and they worked soo much better than the over the counter ones. Honestly, you don’t need pain as well as everything else, so get your team to send you something that works. xx

doodoolatrice profile image
doodoolatrice in reply to Lyndy2

Thankyou Lyndy, i didnt realise that either, Kerry

Chick44nzrn profile image
Chick44nzrn

hello Doodoolatrice. Yes the Taxol is viciously effective against cancer but the side effects are tough. I also had a truckload of side effects getting harder as the treatment progressed , but exercise seemed to help with the legs Hot baths and regular pain relief also relieved the worst of it . Towards the end of the treatment period, with two weeks to go , the Onco decided enough is enough!! ! I wish you all the best of care and support and hope your team review it quickly , so that you can tolerate the chemo while it goes it’s work. Look after yourself ; thinking of you at this time

Denise

doodoolatrice profile image
doodoolatrice in reply to Chick44nzrn

Thanks Denise, it certainly is brutal. X

Hi doodoolatrice, sorry to hear you are experiencing leg pain from the taxol. I was on the same cycle of taxol as you and after my very first dose I experienced neuropathy severely in both thighs.

Like yourself I didn’t find a pain killer that helped much. I discussed it with my Oncologist and she decided on a dose reduction which was more tolerable .

I finished my first 18 weeks of chemo on 5th August and still have residual leg pain but I am hoping that will subside in time.

I hope you can discuss your symptoms with your medical team to help make treatment more comfortable for you.

Good luck x

doodoolatrice profile image
doodoolatrice in reply to One_Careful_Owner

Hi, thankyou Im about to ring my team to see what they say x

Horsesrock profile image
Horsesrock

Hi Kerry, I've been on weekly taxol since December. They reduced it fairly early on as I was having issues with low neutrophils. Im now on 102mg (80%). I wasn't having leg pains so can't help with pain killers but it made a difference to my tiredness. Definitely worth a try. Best of luck. Charlotte

doodoolatrice profile image
doodoolatrice

Thanks Charlotte, i really hope they agree as im on a trial so im not sure what the protocol is regarding dose a reducrion z

Summergold2 profile image
Summergold2 in reply to doodoolatrice

what trial are you on if I may ask?

doodoolatrice profile image
doodoolatrice in reply to Summergold2

Hi, its the Aliftus Trial. Im having chemo and the trial drug x

Summergold2 profile image
Summergold2 in reply to doodoolatrice

Thank you so much hoping this works well for you and no more leg pain!

GSML profile image
GSML

Dear Kerry

The most important think I believe is to stay positive no matter what and trust God that you are going to be better .I did take Taxol with Carboplatin for 6 cycles right after surgery in less than 2 weeks post surgery started chemo..I believe leg pain cramps are also because of Magnesium depletion.I was taking Magnesium and noticed less pain. I was eating lots of vegetables and was doing healthy juicing for 4 months.My Ca 125 prior surgery was 7900 and after surgery 452 and after 2 taxol it was perfect around 9...but currently now I am going through recurrence and this is my 4 th one .I am going to start Taxol again.I felt very week first after chemo week than was getting better..I wasnt taking pain killers unless i had to.I had some days really soar bones that i couldnt flex my shououlders.Warm water or heating pads were very helpfull.I hope this helps and ket me know if you have any other question.Enjoy your days pray smile and dont ever give up.You are Not Alone.Best of Luck to you.Suzanna🙏😘

doodoolatrice profile image
doodoolatrice in reply to GSML

Thanks Suzanna, my magnesium is low also so i have sachets to take. I think maybe i need to dig out my positive head again as i seem to have lost it this last week or so. Im sorry to hear youre going through another reocurrence and are facing chemo again. Its relentless isnt it, this is my third lot of chemo 😢 . Good luck and thanks again, Kerry x

doodoolatrice profile image
doodoolatrice

Thanks for your words of advice everyone. I've spoken to someone from the team and she agreed that i can have a dose reduction so they will discuss is in readiness for my next infusion on Tuesday xx

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