Hi

I had Cisplatin for vulva cancer. I had 5 doses alongside radiotherapy. The only side effects I experienced from the Cisplatin were a dry mouth, oral thrush and occasional tinnitus which is a lot better now. I had a weekly call from my oncology team.....they checked how I was feeling whilst I was having it and prescribed medication if I needed it. 

Xx 

I got told there's a chance of permanent hearing damage but the other doctor said theve never had a patient go deaf yet.

Can I ask how did you feel during chemo? Did you still feel like yourself like. I'm incredibly worried about it more than the radiotherapy.

Hi

I was also told about permanent hearing loss....the tinnitus started once I'd finished the Cisplatin treatment so I was a bit worried but it's much better now.

I felt fairly normal during chemo to be honest. I didn't sleep much at night on the day I had it but I didn't have any nausea.....just issues with my mouth being dry and a funny taste. I had and still have much worse side effects from the radiotherapy.

When do you start treatment and how many sessions are you having?

Xx

I've been told about 3 weeks time. i've to get 30 fractions of radiotherapy and  chemo in week 1 and week 4 so only two doses of the chemo. 

Music is a huge part of my life and so worried about my hearing and voice. 

Do you know what dose of chemo you had and how regular. I've been told my cancer is hpv positive oral cancer and that the dose for HPV is less than non HPV cancers. 

Was it just one bag of cisplatin each day ut was given.

My cancer is caused by the HPV virus too. I had the Cisplatin once a week for 5 weeks on a Thursday. My appointment was always at 11am and I was usually finished by about 2:30pm to 3pm. Then I had my radiotherapy dose.

Xx

I've been reading up on cisplatin and apparently if the doseage goes above 300mg its when most damage occurs.

I've also watched a documentary called the science of fasting which is about chemotherapy while fasting. Apparently during fasting the normal cells go into protective mode and resist chemotherapy but thr cancer cells don't and the get the full dose of the chemo. This was proven with 10 rats. 5 were fasted and 5 were not and the gave the rats 5 times the normal does of chemo the rats who fasted had no effect from chemo but the the rats who didn't fast all died. I feel like there's a lot of evidence to support fasting during chemo but my oncologist said they don't want me fasting and not to loose weight. If fasting will reduce the side effects from chemo then I'd rather be doing it in order to preserve.my quality of life.

I've been told if I loose too much weight regardless of if I can eat or not they will put a feeding tube in me. My ent surgeon said I should try where possible to not have a feeding tube fitted as the use of my muscles are so important to my long term eating and quality of life.

I still feel like i can't believe this is happening to me as I'm only 40 don't smoke and never took drugs, worked hard all my life,  but I'm told hpv cancer is becoming very common in younger people. 

With my chemo only being 2 cycles I wonder if they will give me a higher dose than what you got weekly. I got told the chemo stays in your system for about 3 weeks after you get it.  I'm also worried about steroids as I've heard they can cause strokes later in life.

My anxiety levels are through the roof at the moment and just don't know how I'm getting through this. I known my oncologist is wanting to give me the best chance of cure but if I was offered the surgery and radio I think I'd take it.

I had three lots of cisplatin. It's a grueller for sure. The main side affect was fatigue. I could barely make it out the building (I was there from 8am to 530pm). I was sick the morning after but the anti sickness drugs stopped that. I had my cisplatin on a Tuesday (and doxyrubicin alongside it as well as weds and Thurs). The weekends were tough but by Monday I had come round and Tuesday I was eating again. Though I had to add a day for recovery after each session. 2nd round was Wednesday, 3rd round Thursday.

It's an absolute cakewalk compared to head and neck radiotherapy. My god.

Good luck

Edit:having read some posts above, I'll add tinutus to the list as well as infertility, though having 2 kids that doesn't bother me. You'll lose your hair bit it does come back. I used to have light brown but it's now jet black which is weird. 

Hi 

thanks yeah I've got 2 kids and not wanting to have anymore so the infertility doesn't bother me but I'm hoping there is no effect on sexual function or satisfaction. 
 

did your tinnitus start early on during the chemo has it improved after the chemo? 
 

thanks

If youve seen my posts elsewhere you'll see one about sexual function. As a male it's a bit of a kick to my masculinity I suppose. But I'm seeing it as temporary.

Tinutus - hard to pinpoint when it started. But it's still going on. It sometimes drops off but it's momentarily. Then back again. To be honest, you don't realise it's there until its gone sometimes.