Hello everyone, i have TN2N1M0 left tonsil HPV squamous cell carcinoma. Diagnosed 6th June 2024.

Hi Nise247 

Im so glad you mustered up the courage to join us. So sorry you’ve had to though. 
Theres no doubt the treatment is pretty awful but it doesn’t last long and most of us make an uneventful recovery. I know that’s not much comfort at the moment but you will surprise yourself how well you manage. 
NOBODY gets all the chemo side effects. Sickness can be controlled, you just have to make sure you get the right drugs. If one isn’t working get your team to try another….. oh and take them religiously. 
Cisplatin can affect your hearing so please say if you are having problems. There is an alternative. Having said that chemo adds only a little to cure rate and many folk don’t have the whole course. 
RT is a different kettle of fish. Short term side effects of the treatment are painful but again can be controlled. 
Do you have a feeding tube fitted? 
Stay with us. Ask anything you like. Somebody is usually around to help 

Hi and welcome from me to our group.  Firstly we are here to listen and help.  So you have done the right thing.  Even if you only want to rant about something we listen.

There is no denying it.  Treatment is brutal and recovery torture.  I am now at 6 months since starting my last set of treatment so make the statement with total honesty.  Having said that I am doing very well and living a good life.  It is different, but still good.

My journey has been long and torturous and I had lots of time to consider my options.  I had both chemo and RT after previous surgeries so have almost every T-shirt!  Look at my profile.

They tell you all the side effects but most of us get only some of them.  Take charge of your treatment and be proactive and you will minimise the side effects, or at least the effect they have on you.

Speak to the teams treating you.  Almost certainly they will have seen people with similar concerns and have tactics to help you cope.  Never be afraid to tell them what it is really like, otherwise they can't help.

Is it worth it?  Well, after 4 1/2 years to hear the words "complete metabolic response"; it most definitely is.  Not easy, but the other option is even worse.

Stay with us.

PS

I’m over five years free of treatment and have been discharged from routine review. I can say that I had a few bumps in treatment and recovery. It was a challenge but unlike Peter I didn’t find it torture. Life is good and I’m pretty well

We are all different and most of us face the challenge pretty well too

Thank you so much for your reply! 
I am being give Carboplatin, which I now don’t want. 
I have had hearing problems since birth in my left ear, same side as cancer, so I know I can deal with tinnitus and hearing loss. 
I want Cisplatin as it will be less impactful on my body and am worried it’s too late to request a change in treatment plan. 

Hi Nise

T2N1M0 HPV16+ tonsil cancer finished ChemoRadio June 2023

Yes it is a minefield, I questioned that at 68 whether I would be able to get through the tough treatment regime and long recovery....plumped for the treatment ....really no choice....PEG feeding tube insertion was not ideal but probably saved my life...it is a long hard road but outcomes for most are very good.....

After-treatment PET/CT scans were clear....been on a few sunshine breaks since....still improving week on week....

Please stick with this forum....plenty of sound advice and support from others who have walked the treatment walk

Take care and best of luck

Peter

Thank you so much Peter, that has helped me. 
I am looking at having tube feeding in week 3 of treatment. 

Thank you so much Dani, it’s so reassuring hearing from everyone who’s on or having been on the same path. 

Hi i Nise247 Welcome to the group from me, we are all here to help where we can. Feeling anxious before starting treatment is natural, once you start your treatment and get into the daily routine you will feel better about it all, you will not get all the side effects, and those you do get tell your team about them and they will give you something for them. The treatment is challenging, which effects people in different ways, but it is also doable, and it does come with very high cure rates, many of us on here are living proof of that. Try to take things one day at a time, you will be able to do it. Any worries along the way let your team know, you can also ask as many questions as you want on here, someone will always come back with answer. 

Ray

Honestly I’d go with what your oncologists recommend 

Both cisplatin and carboplatin are used as radiosenditisers making the cancer more sensitive to the radiation. Carboplatin is not far behind cisplatin in efficacy. Both add around 6% to cure rates but remember if the cancer is HPV driven your chances are hugely excellent even without chemo 

I didn’t have chemo and I’m still here. 

Nise247 said:

Thank you so much Peter, that has helped me. 
I am looking at having tube feeding in week 3 of treatment. 

That’s what I had in week 4. An NG tube. It did really well for me. 
Some details in my blog. I purposefully haven’t gone into too much graphic detail. I didn’t think it was necessary…. But that’s just me.