Treatment help advise

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Hi everyone, hope you are all doing ok. An update I saw my oncologist and his team yesterday and we discussed my course of treatment for squamous Cell Carcinoma 16 positive HPV in 3cm lymph node left side neck and primary site left side tongue base.

It was discussed that as the primary tumour in tongue base was small they thought 7 weeks of radiotherapy VMAT 5days.

But my oncologist thinks that because of the quite large lymph nodes he suggests 7 weeks radiotherapy but a lesser dose and a lesser dose of cisplatin to help with less side effects. Has anyone else had this treatment option by having reduction of both. How did you get on with the cisplatin? I'm having the radiotherapy but need to let my oncologist know if I want the cisplatin alongside it.

I'm really worried but even with the radiotherapy there is a 95% cure rate but the chemo cisplatin will give it a bigger kick up it's cancer backside.

I would really appreciate some advice please

Sarah xx

  • Hi Sarah

    I had 30 Radio and 4 cisplatin.....supposed to be 6 cisplatin but my system would not take the last 2....cisplatin was an extra to give the treatment an added push...I wasn't offered a choice.... 

    Side effects of cisplatin were unpleasant....but not everyone has them.


  • I'm really worried but even with the radiotherapy there is a 95% cure rate but the chemo cisplatin will give it a bigger kick up it's cancer backside.

    The cure rates oft quoted are 95%. That covers the treatment the oncologist decides on, depending on symptoms It will cover RT alone, RT plus Chemo, Surgery Plus RT and Surgery Plus RT and chemo. Chemo therapy adds around 6% to cure rates. I think the 95% is a mean of all the treatments...taking every case

    I had six weeks RT and no chemo as I had no nodal spread and my cancer was localised. I'm sure Hazel will be on soon. She had seven affected nodes so she had seven weeks of RT and chemo but she didn't finish the chemo course.

    Cisplatin acts as a radio sensitiser making the cancer more sensitive to radiation, so it makes sense that the radiation dose might be reduced but I don't think it is by much. It's something to ask your oncologist


    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

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  • Hi Sarah.  I did not have reduced doses of either RT or chemo but I had already had the lymphs surgically removed and they wanted to ensure everything was gone.  I refused the cisplatin as I did not want the side effects.  In particular I was worried about my hearing being damaged which is a known and relatively common side effect.  Instead I had carboplatin, which has its own side effects that I could accept.  Both chemos are really tough and act in a similar way with carboplatin being very marginally less effective than cisplatin, but if you have the full dose of carboplatin as opposed to a truncated dose of cisplatin I guess it is probably more effective.

    I definitely think it is worth taking the chemo if offered, but maybe discuss in detail the side effects and options in your specific case.

    See my profile for more details of my convoluted journey
  • Hi Sarah I have 35 radiotherapy  over seven week period I was planned to have three chemo sessions with one week three and the last week but I only had the first two sessions. I did have seven affected lymph nodes and my cancer was in my right tonsil  as I type I’m sat in southern Spain six years later happily living in my life treatment is hard. It is brutal but if you take it one day at a time one step at a time you’ll get there. try not to stress if I can do it anyone can any questions just pop on here and one of us out with pop in and help you  I didn’t have the last chemo and discussion with my oncologist. We decided that I had handled the first two chemo was really well. I had no tinnitus. I wasn’t sick. I did take all my medicine. He told me  that  my lymph node that was the most prominent one had reduced dramatically in size so we decided not to have the last chemo? It does have a small percentage to the overall 95%.. 

    hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Thankyou Hazel, you give me so.much hope and strength to do this. Reading your blog over and over you are an amazing and inspirational woman. 

    The oncologist said that he would give me a lower dose of radiotherapy together with the cisplatin so the side effects are not so terrible.

    I can't remember the % of each I will have to look at my notes and info that he gave me. What did you do to help yourself get through it.

    You had a lot of travelling to your hospital as well, we are an hour away each way to all the hospitals we are under, that in itself is so tiring and a concern if when home the side effects are so bad, was there anytime in your treatment when you had to contact the 24hr helpline 

    Did you do lots of research before agreeing to treatment and what swayed you.

    Sarah xx

  • Hi Sarah. Thank you  my blog it was  the only  thing u could control and  it made it easier for John to tell people to read it.
     trusted my team I did t read up on the pros and cons I was good at my job so I trusted  that my team and my fabulous oncologist to do their best for me.
    No I never needed the 24 hour line. I took my meds as directed I took the anti sickness meds even though I never got sick I did as was suggested by Dr Sen. 

    I had at least an hour some days more my hubby drove he also cooked cleaned shopped. Checked my ng tube when it needed leaving me free to concentrate on me. I treated the entire 7;weeks as a job that had to be done. I didn’t research as I said before I was good when I was working at my job but I wasn’t a medically trained person so left them to do theirs. 
    I had 70 grays of radiotherapy split into factions of 2 grays a day. Ciplatiin was worked in weight and height from my understanding likewise the saline solution and the speed it all goes in I’m onky small so took longer for my body to,process it hence my 10 hour days on chemo. The first 3  weeks or so I pottered around but then wham it hits overnight. 
    one thing that helped me was I had a uniform for my hospital visits ut put me in the mindset if work as I worse a uniform when I was working plus saved the hassle,of what to wear. 
    hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Good evening Sarah, i had 30 courses of radiotherapy and 3 of Cisplatin and on the whole, i coped well with it all, maybe lowering the dose but extending the period will help, my treatment was all done within a month (approx) so what has been suggested might be more comfortable for you and your body. We all react and recover differently as some people can struggle with Cisplatin as a few on here have mentioned, some just have radiotherapy and make a full recovery and use chemotherapy as a backup if ever needed. As i said i had both and would most probably do the same again. Im a bit different as i also had surgery first to remove the tumour followed by the radio/chemo so i had the full works Slight smile. I wish you all the best in your decision, take care.

                                                                                      Chris x

    Its sometimes not easy but its worth it ! 

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