Good morning - I was diagnosed with NUT carcinoma in March of this year....currently undergoing chemotherapy. I had never heard of this type of cancer before and was told this is a rare type. I was wonder if there are anyone on this forum who has the same diagnoses?
Hi TopC
So sorry you have found yourself here
I had to look this up.
I’ve bee here about five years and I can’t recall anybody posting about this.
I did a quick search for you and came up with a blank I’m afraid.
Maybe a social media search for a support group might help.
I hope you find somebody to talk with
Meanwhile we can help with chemo questions if you want to ask something
What chemotherapy are you on?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Beesuit,
Thanks for reply. I am on palliative carboplatin and docetaxel. Due to complete cycle 6 this week then a few weeks of a break before ct scan on September. I have looked on FB bit can only find a support group based in the US....nothing for UK. Will try again.
Docetaxel is awful. Poor you Because it’s so rare there might not be one in the U.K. see what the USA one has to say?
Macmillan has a chemotherapy group that might be useful too.
It’s here
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi hello from me as well sorry I’ve not heard of anyone either. I had cisplatin chemo which was ok for me I was lucky. But happy to help if I can.
Or just have a rant in here it’s a good place to rant.
ww never judge as we’ve all been there.
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
Hi RadioactiveRaz...thanks for message. Good to know I can off steam if I need to. So far have been ok, had some low days but have a great family and friends network around me. My med team and doctors also have been fantastic.
Hi it helps to have a good medical team around yiu as well as family.
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
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