Second cycle of oxoplatin

Hi Mallorca cyclist 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I hope these side effects soon go.

Thank you but still struggling with facial muscles twitching and calves still hurt. I did look on the Diagnosis and treatment page and found a few people who had also had the same reactions, quite scary. Don’t know what the treatment plan will be going forward but it’s making me feel quite anxious today. Thank you for bumping me back up the page.

Hello 

I had muscle reaction similar to yourself. My eyes could hardly stay open. Affected my eyelids. The muscles. Put heat packs on and it eased. Was strange and my legs were weak. Once I got home. It all eased.  My dosage got reduced too. But I still got it. The nurse said its the muscles.  

Hope you get on ok. Heat packs on my calves before I left hospital helped. 

Karen

I didn't have this reaction specifically. But the mouth sensitivity was severe and it's easy to imagine it spreading to the facial muscles. I'd be guessing but it seems likely that this is a broader than usual nerve reaction. The nerve issues are causing muscles to feel and behave strangely. 

I'd speak to your oncologist about reducing the Oxaliplatin dose. My dose was reduced twice before they offered to remove it completely. I was told that the dose reductions did not hurt my prognosis. 

I really like the suggestion of heat packs. I wish I had tried that. 

The heat packs definitely helped me. My dose of oxaliplatin was reduced too. My legs were very weak. Heat packs on my eyes alternatively leaving the hospital.  But I did it and I really hope this info helps you. 

Karen

Hi Karen, thank you for your response, I feel totally wiped out today, I put a heat pack on in hospital and it helped with my arm pain but dealing with weak muscles is a totally new experience to me. I have read up about electrolyte issues so my symptoms could be due too an imbalance. I will be speaking to the oncologist in 3 weeks before my next dose is due as don’t want to experience this again. 

I read up on the electrolytes too and took lucozade sport. That seems to be good for the electrolytes. 

Keep positive I know its hard but your fighting. 

Karen

Hi Susan, it affected my motor nerves as well as sensory.  I will definitely be discussing with the Oncologist in 3 weeks. It was slightly reduced on the second dose due to previous facial muscle weakness but I was given it over a longer period and it seemed more intense this time with the numbness in my arm. Only another 2 to go if they decide to go ahead with it. Thank you for your response.

Thank you, I am trying to keep positive and give it my all. I will try the Lucozade drinks and see if they make any difference. 

Hi I found the infusions really tough, was in bed after for days, sore arm, heavy eyelids and cramps in face and hands.

I didn't have the weakness but did see on another forum someone had this reaction and couldn't walk or speak. I think for them the dose was tweaked, antihistamines were given alongside increased glucose.

Good luck chatting to your oncologist and hope you feel brighter soon.