Things moving along

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Had first meeting with my oncologist yesterday.Getting PEG on 11/8.Nervous.Had to get 3 teeth taken out yesterday too.I'm getting 6 weeks radiotherapy and chemo first and fourth week.I noticed how alot of prople have different lengths etc of treatment and wondered is everyone different depending on what they have.I tried to remember so many questions yesterday but of cours forgot alot too

Turi

  • Hi Turi

    Hopefully you feel a little better knowing what treatment your having, at least you know what is happening now.

    I'm sure if you call your SCN she can help you with the bits you've forgotten. I was told to take someone with me, but that's not easy when they are working etc. A friend of mine recorded theirs on there phone.

    I would have thought it does depend on what, where, how big etc etc the cancer is yo what treatment you have.

    Wishing you the best of luck, and i hope all goes well

    Take care 

    Cat X

  • Hi Turi. Most people find it helpful to have their treatment plan outlined, so they know what is happening, but that can bring more questions and worries.

    My initial plan was the same as yours. I had 2 teeth that needed to be removed on the right side, and they took 3 more on the left (just to be safe).  They left me with no molars, holes and stitches and then told me not to lose weight Face palm. Had a RIG tube fitted prior to treatment too.

    Anyway, I hadn't had my PET scan when my plan was outlined, after the PET I was told that I was going to start with 'Induction Chemo' (1 full day in hospital and a bottle home for 5 days) x 3 times, every 21 days. Then when it came to the Radiation treatment time, the Chemo was 1 full day every week over the 6 wks, only managed 4 before my body said "enough". 

    The changes were based on what the scans showed, my tumour grew and spread dramatically between MRI and PET. Then reduced dramatically after the Induction Chemo as shown in the mapping MRI. I just trusted their knowledge, asked questions when I needed clarity, and trusted the process. Best of luck with the next stage 

    Tina x

  • Hi Turi. It does depend on how advanced your cancer is. There are protocols for all the stages. 
    Mine was T2N0MO. Having no spread to lymph nodes made me stage 2 so I didn’t need chemo. I got 66 Grays over 30 sessions. 
    Whether you get a PEG/RIG before you start or a nasogastric tube when you need it is down to each individual trust. I had an NG tube when I couldn’t swallow any more. 

    Dani 

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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Cat,

    Oncologist did say 6 weeks radiation with the full day chemo week one and week four.I realise everyone is different depending on what they have I suppose.Thanks for getting back to me.

    Turi

  • Thanks Dani.I think it was abit of a daft question !

    Turi

  • When did you have your treatment ? I've been told the radiotherapy is the main treatment and the chemo enhances it.Unfortunately we don't have a PET scanner but will get another ct scan.

    Turi

  • Hey Turi. No question is daft. There’s lots of things the team don’t tell you. The RT is the main treatment. The cisplatin makes the cancer more sensitive to the radiation. My oncologist said it adds around 6% to cure rate if you have the cancer in your lymph nodes. Not everybody gets a pre treatment PET. It depends if they are looking to make sure there’s no lurking cancer in more lymph nodes.  You will get a PET or MRI three/four months after treatment. 

    Dani 

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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Unfortunately we don't have a PET scanner but will get another ct scan.

    We all get a planning CT with the mask on so that they can accurately measure the cancer and the target. I had my mask done on the simulator and had my scan straight after the mask hardened. They make lots of marks on the mask and you might get a pin prick tattoo on your breast bone which they use to make sure you are straight on the treatment table. I got fed up of looking at mine so I had something tattooed over it. 

    Dani 

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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Turi no question is too silly. My trust Leeds cancer centre does chemo  in 3 does i only had 2 doses in discussion with oncologist we jointly cancelled thr 3 rd  Radiotherapy I’d the main course if treatment chemo helps to make the cancer more sensitive tj radiotherapy nig it’s cn king a small percentage so don’t stress if you don’t get all the chemo. I had 35 radiotherapy as I had 7 affected lymph nodes. You’ll get there one day at a time. 
    Hugs Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • I just heard the words CT scan.I had nobody to take with me and it becomes overwhelming trying to take it all in.Did you have eyes put into your mask ? Alot of people say it's a good idea ?

    Thanks for all your advice,

    Turi