Cisplatin chemo struggle

Hi, I had my first 3 week cycle of cisplatin last Monday (10 days ago) from day 2-3 things started to get worse and day 3-6 I questioned if I could even do it again, it's hard to explain the way it made me feel but if someone had offered to press a switch and end it all I think I would have. I started to pick up a bit at the weekend but then crashed again, I think I may have a cold which is making me feel much worse again. I'm having daily radiation to head and neck for 6 weeks too so that's going to be kicking in soon and I was really hoping to feel slightly better before that happens. The nausea was manageable, the taste and smell that was there for days was vile, I had aggressive hiccups for 4 days but believe this was the steroids so may be able to change these next cycle, I've still got horrendous tinnitus and some hearing loss, I had some neuropathy too but that's gone. All of these I could take but it was the overall weird ill feeling that was just so overwhelming Has anyone else had similar experience? I'm generally really positive and upbeat so this has really thrown me. I'm absolutely terrified of my next infusion in around a week and a half

  • Hello and thank you for posting. 

    I am so sorry you have been having a difficult time with cisplatin, the side effects of cancer treatments can be hard to deal with. The chemoradiotherapy regime for head and neck cancer patients is intense and you can feel a number of different symptoms both physically and emotionally. Here is our information on this treatment.

    Here is some information about cisplatin in particular. 

    Others on this forum may come forward with their experiences, especially if you move this post to the 'living with cancer' section. Sometimes hearing from others in the cancer patient community, who are going through similar, is the strength that some need. Macmillan have different types of support including a forum, see their networks here

    This head and neck cancer charity The Swallows might be helpful.

    There is also a patient support hub at this other head and neck cancer charity site. 

    Do talk to someone in your team Minty about how you have been. Some people find keeping a symptom diary of how they are between treatments helps. Your specialist nurse (CNS) and/or the nurses giving you your treatment would want to know how you've got on so let them know. They may be able to add in certain medications to help with how you have been feeling. 

    Take care, and if you want to talk things through with the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Sarah.

  • Thanks for your reply. I spoke to one of my team today, they said they might change me to carboplatin for the next cycle as they're concerned about hearing problems. I'm in for an update meeting on Monday, so going to discuss it further then and see what they say

     

     

     

  • Hi just wanted to jump on and say I hope you’re feeling better? Definitely should be changed to Carboplatin if experiencing that amount of symptoms so early on especially Tinnitus. Good luck with the rest of your treatment.