Thanks so much for sharing Lynn. I understand you have been thru so much. Keep up the fight you are an inspiration. Lynn my NPC was detected by the ct scan and then pet scan. The pet scan showed no further spreading at this stage. I'm not in the UK at present but I have been advised that surgery is the safest treatment for me. I'm waiting for the biopsy results on June 4th. Lynn stay strong ok. Was surgery an option for you. From the research I have see the cancer grows around and then down. I'm so glad to also hear that the 3 moth scan was clear. Thanks so much for wanting to chat and share with me. Regards Ian.

I'll be thinking of you on Thursday when you get your results.  Good luck and let us know how it goes

Thanks so much Lyn. How are you feeling. I hope you get back your feelings soon. How are your eating habits. May I ask how you were diagnosed with npc. Were you told the possible causes. Excuse me for asking so many questions. Lyn please take care and stay strong. Regards Ian.

I had a biopsy done up through my nose and it was very painful, just local anaesthetic. I then waited a week for the results and started chemotherapy 4 days later 

I am tired a lot, the fatigue has been difficult. I am beginning to eat more but have a very dry mouth which is helped by a prescribed spray. I have bad neuropathy in my feet, on medication to help. No cause given just 'one of those things '

Hi Lyn, thanks so much for sharing your experience with me. I'm glad you are starting to eat better. Trust you have family and friends around to help you get thru this. I will contact you after I get my biopsy results. I couldn't get the biopsy up through my nose because there was only dead tissue. Therefore I was put to sleep and a lot of dead tissue was cleaned away before we could get some suitable tissue for the biopsy. Lyn take care and chat soon. Regards Ian.

Hi Lyn how are. Trust your feeling better and you are eating and living better. I'm thinking of your discomfort and hope it gets better soon. Regards ian

Hi Lyn. I got the biopsy back and it was inconclusive. They now believe it could be lymphoma so I need to go for bone marrow extraction to confirm. It's a process that we must go thru. Fingers crossed.

Hi Lyn how you feeling. Sorry I have been having problems with the chat site. Have you been receiving my posts. Regards Ian.

Hi,

Apologies, I've had IT issues too.

How horrible that the results are inconclusive. When do you have the next lot of tests?

Hi Lyn trust all is good with you. Stay healthy now. I have sent the biopsy tissue to another hospital for a second opinion. Another week or so. I have been advised to have a body fluids extraction. I will wait till after the second biopsy comes back. Being in limbo is tough right. Since I had the biopsy surgery and cleaning up of the dead tissue up behind my nose I feel better and not a lot of thick green yellow snott. Excuse the expression. Time will tell. You take care Lyn and thanks for listening. Get well soon.