Starting out

Hello. I’m 14 months post treatment for tonsil & lymph node hpv 16 positive. I had bilateral tonsillectomy, PEG fitted then 6 weeks chemoradiation.30x radio & 6x chemo. I had complete faith in my consultant  & when he told me that the radio plus chemo was ‘belt & braces’ I put myself in his hands. Why are you reluctant to have chemo? 

Hi I’m almost 5 years post treatment for HPV tonsil cancer with lymph node involvement. I was due 3 chemo infusion larger doses was they way my trust went. one every 2.5 weeks I had 2 with no issues  but in conjunction with oncologist didn’t have the 3 rd infusion. My palpable lymph node had shrink. I was lucky I had no. Reactions to chemo. I was told the chemo makes our type of cancer more responsive to radiotherapy. At the  end if the day the decision is yours I took the belt and braces option and was happy with my decision that I had 66% but was equally happy that I avoided tinnitus and didn’t suffer nausea from the chemo. Any questions please ask. I would be wary of going down the dietary changes during treatment not sure what you’re thinking of cutting out but to he honest for a good  few months very little food is actually eaten. Remember HPV tumours respond extremely well to treatment. 
Hazel x

Welcome AniA

So sorry you have had to join us but know the HPV associated oral cancer is curable.

You're right about the 5-10%. I had exactly the same conversation with my oncologist a coupe of months ago. His figure was 6 and a bit.

I escaped Chemo as I was stage 2....no nodal involvement.... which they use as a cut off. Anybody with stage 3 and 4 is offered it, I think those are the NICE guidelines

AniA said:

I'm willing to make major life changes. Already said goodbye to lots of food groups so if in the longer term such  nutritional, lifestyle, alternative supporting therapies could offer me that 5 to 10% chemo is suggesting. Again, just thinking out loud here but if there is any of this that resonates and there are suggestions, I would be happy to hear from your experience.

What Cisplatin does is sensitise the cancer to the Radiotherapy. I'm not a doctor but I might speculate that if I had more than one lymph node involved it would make sense to me to take the chemo and keep the radiation dose down. I remember, when diagnosed, my friends saying  to me that I was lucky to escape the chemotherapy but RT is much worse. So to my mind if I could hack the RT them chemo would be a doddle in comparison. Quite a few people find that is so. I think there is a perception that chemotherapy is absolutely awful, you spend your life either in the loo or in bed and your hair falls out. None of this is the case with throat cancer

Will nutritional, lifestyle,alternative therapies affect the cure rate? Not much research there nor in whether they might prevent recurrence.

I'm a huge sceptic regarding diet and curing cancer ...that's a very murky path.

These are questions for your oncologists, but ultimately it's your choice

Lots of people don't have the whole course if side effects become too  much and get cured. Some people don't have any chemo and get cured, some have a recurrence.

Me? I'd take the chemo and every drug they throw at me. 

Whatever you decide....stick with us. there is a wealth of experience here and always somebody to hold your hand.

PS have a look at Mark's diary by clicking on his name. MarkEL 

Best wishes

Hi AinA, welcome to the forum from me. I'm about 51/2 years post treatment now, I had 30x RT and 5 out of 6 chemo days. The way I looked at it was, I wanted to use everything I could to get rid of the cancer, so I opted have everything they offered and recommended, like the others have said, I put myself totally, in the hands of the team.  It is of course our decision; on whatever treatment we have. If you have any questions just ask on here, someone will always come back with an answer if they can. All the best for your treatment.

Regards Ray.

Hi AnIa

I too am just starting out with both tonsils, soft palate and huge lymph hpv16+ cancer. Only 4/35 radiation and 1/7 cisplatin experienced so far. As I'm 73 yr old, I asked for a reduced dose of the cisplatin as no long term studies have been done yet, to my and the oncologist's knowledge, of how post treatment affects people in my age group long term. Quality of life stuff. We know cisplating helps the radiation destroy the cancer.  I was very concerned about all the side effects  of cisplatin ( in addition to the radiation) and remain so. However at my family's encouragement and my oncologist's kind option that  I had a choice whether to continue or stop at each and every chemo appointment I decided to give it a go. This was what went into my choice making. His goal for me is 5/7 treatments. I personally want to get to 3 if I can. But if  I can do it, I probably will continue to at least 5. Everyone must make their own choices and I respect yours whatever it will be.

This forum is truly wonderful. I live in Canada and while there are forums here too, there is nothing like this one here that I have found. I rely on it and find everyone so supportive, informative, honest about the real experience which is what means so much to me and I hope will be for you as well.

Send love for your journey

Kathy

Hi AniA

Welcome and I am sorry you find yourself here.  That said this forum is a great place of support for those pre, during and post treatment.  We each make our own choices and have to live with them.  Your choice is no less valid than the ones I made to only have surgery and no other treatment.  None of the options are easy, but keep in mind that HPV+ cancer is very responsive to treatment and has a high cure rate.

As to your lifestyle choices...  My personal choice is to keep healthy and fit.  However, I am not about to give up things I like on the off chance that I get a few extra months of life - potentially a poor quality of life.  I would rather enjoy myself and go out with a bang sooner than be "good" and have a dull few extra months.  

Personally I would take the scientific options open to you if you feel the risks and benefits meet your needs.  That is what I did in my treatment and I am still here coming up to 4 years post diagnosis.  Good luck and we have your back!

Many thanks for your response, it is good to be in contact with others along this path.

My reluctance? weighing up the benefits against the side effects.

It's not something that can be answered easily as we each are going to respond uniquely.

Dear Kathy, 

Thanks so much for sharing your thought process in going into this treatment. It really does take some discerning wisdom and I appreciate your letting me know how you are going with this, personal stories help a lot.

Sending love and all best wishes for your continued progress and healing.

Thanks so much Peter. I can resonate with the 'dull few months' not being high on anyone's aspiration list. Some joy, happiness, love and appreciation goes a long way to keeping the quality of life in a good space. I had hoped to have surgery and say no to anything else, but surgery is not an option. So, the first line is the radiation and chemo and as you have said, then keeping healthy and fit.

It's of great value to know that group has my back! May we always be supported in life.

Thanks so much Ray, delighted to hear that you are long past treatment and still doing well.

I appreciate the encouragement.

Take good care