Only just joined, been diagnosed for over 1 year now.

Hi First a little history, Gland up Mar 20, diagnosed July 20.

S4 Base of tongue, lymph nodes & Mets in lungs.

Chemo 1st, 5 rounds, worked initially then stated to grow again.

Nivolumab X2 caused Pnuemonitis, pause.

Then 2x Nivolumab, where I thought it was going ok. Developed a sore mouth, turns out the cancer is now bigger that when we started back in July 20.

Not many options, decotexal 1st & a referral to another hospital.

Completed 2nd docetaxel, but mouth sores terrible & loosing weight. Ng tube fitted but removed after 24 hrs, so uncomfortable.

I feel low, I don't know where to turn & just waiting fur a suitable trial to try & help. Don't think I can continue with the docetaxel anymore.

I haven't been told this is the end , but it does feel like it & I can't shake that. I've never felt lower.

Is there anyway out of this vicious cycle.

 

 

  • Hello Surfer69,

    Welcome to Cancer Chat.

    I'm really to sorry to hear how you've been feeling and I hope being on the forum has helped in some way. It important to let your doctor know about the pains you have and how unhappy you are with the medication. They might be able to make adjustments. There is some information on coping with cancer here, which I hope will help. We have a team of cancer nurses that you can speak to also. They're available on the freephone 0808 800 4040. Lines are open from Monday to Friday between 9am and 5pm.

    Best wishes,

    Moderator Anastasia

     

  •  

    Hi Surfer,

    A very warm welcome to the forum that nobody wants to join.

    I am so sorry to hear of how you are feeling. Treatment can make us all feel low, especially when it doesn't appear  to be working. Take heart in the fact that you are still receiving treatment. You wouldn't be getting this if it were the end. 

    Have you considered getting some counselling? You might find this helpful to put things int perspective.

    Thinking of you and hoping that you soon find a suitable trial. Please keep in touch. We are always here for you.

    Kind regards,

    Jolamine