UPDATE

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HI everyone,

Just thought I would quickly update you on hubby's condition.

We went to see the oncologist on Wednesday and unfortunately he has not been accepted for the immunotherapy and once again gutted. They have said that they will now work to manage his cancer and to give him more time and quality of life for whatever time he has left. He is to start chemo in 3 weeks time for 3 cycles and depending on how he responds to the treatment he will be given another 3 cycles. They have also said that they may be able to offer him radiotherapy which I was a little surprised at as he had already received that in the first instance. Apparently as he didn't have too much and it was targetted at the specific area where his original cancer was then they can give it him. They have not ruled out the immunotherapy at a later date as if he responds to the treatment well then he may be offered the therapy after the other treatments. Bit surprised at that too as if he is not compatible in the first instance why will that change at a later date unless the chemo could make a difference or is it a cost saving exercise?

He is happy to go along with the treatment and willing to give it a go. Unfortunately, we will have to postpone our holiday for a bit as his treatment is scheduled for when we were away but this is more important and at moment he is very tired and spends most of his time in bed as the prescribed painkillers are knocking him out so hoping he will feel a little better once the treatment starts.

I know it is not a cure but hopefully it will give us some further time together to create and do the things we can to live a full life for a while.

I will keep you posted but at the moment we are taking each day as it comes as we are going to need to all the strength once again to get through this journey.

Gill. x

Beesuit over 3 years ago

Hi Gill. Thanks for the update.
This immunotherapy thing is a bit of a conundrum. I think with a recurrence NICE guidelines used to be cisplatin first then immunotherapy if that failed. It’s nuts!
One of our forum members Trickycycling has gone down this route and has a blog about it.
I haven’t heard from him for a while but last I did he was watching some racing abroad. Maybe he is at the Vuelta?
I think of you both often and hope you find time and strength to be together for a long time yet.
Hugs and love

Dani

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

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

RadioactiveRaz over 3 years ago

Hi Gil Thank you for the update. Can’t answer why no immunotherapy but can try to help with the chemo and radiotherapy when he starts. When you find out what chemo he’s having let us know. Like you said he’s been through it before but good on him for giving it another go everything x that you get to spend more time together. Maybe this radiotherapy is being targeted in a slightly different area or us it his chest area ? this time ?
Sending much love

hugs Hazel xx

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/

https://oraclehnc.org.uk/signawaycancer

Anorak over 3 years ago in reply to RadioactiveRaz

Hi Hazel and Dani,

Thanks for your kind words as always.

Things seem to be moving quickly now and he has tests on Tuesday and the line is going in on Thursday and then oncologist the following Monday when I think he might start the treatment.

He is having Cisplatin and Fluorouracil chemo drugs. Not sure what to expect really and what side effects he may get but he is all for giving it a go and I admire him for that. He has been given leaflets on possible side effects of the treatment (bless him he is worried more about his hair) as he still has some left at the ripe old age of 64! Think you are right with regard to the radiotherapy as they said it would be directed away from the original cancer site so at least they are looking at options and not given up on him and they did say they would not put him through it if they didn't think they could do something for him.

We have decided to put the holiday on hold for a bit but will try and get out as much as we can as and when he is feeling strong enough to do so and will bw guided by the hospital.

Well back on the long journey to hospital again and it looks like a few early rises as his appointments seem to be the first available slots but it is a small price to pay and will keep that thought firmly in our minds.

Thanks again you are both truly champions.

Gill. x

Beesuit over 3 years ago in reply to Anorak

Legends? Ha!
I wish I could offer more.

I have everything crossed for you both