Sinus cancer.

Dee, thank you so much for taking the time to message me. It's horrible to know what your up against but for me finding someone on here who has gone through a very similar experience is really reassuring and it drives me on to try and copy your success!! 

Its mad how much it helps to know that someone else has done it and come out the other side.

I am trying to drink as much as I can at the moment and the teeth are getting treated better than they ever have before, brushing 4 times a day, moisturizing mouthwash and sprays, it's like a luxury spa for teeth in my bathroom!! 

I will definitely look into the vitamins and the diet link you sent through too, honestly Dee anything that pops into your head that you think might help, send it through,  it's all gratefully recieved. 

Hi Chippy, no problem! There's quite a few on here who know exactly what its like but to find someone else on here with SNUC! It's just great to have someone to talk to about this particular type of disease, I have absolutely amazing family and friends but I've found it very isolating as I couldn't find anyone with this to talk to. 

I had 3 rounds of TPF, (Docetaxel, Cisplatin, Fluorouracil)  Docetaxel and Cisplatin administered in 1 day and Fluorouracil 24 hours a day for 5 days, so 6 days in hospital and home for 16 days and repeat for 3 times. Then 35 sessions of radiotherapy with Cisplatin for 3 days. 

Is that the same as ur treatment Chippy?

If the chemo is making u sick or upsetting ur tummy, ask for Ondansetron 8mg melts, I found these worked the best for me! 

That's a bit different to the chemo I've been having. I'm just having the cisplatin and flouroracin once every three weeks. The cisplatin is being put in at the hospital and I have a pump fitted for the flouroracin and that goes in over 3-4 days at home then the pump gets taken off. They were talking about doing 3 courses of chemo if the tumour responded really well to it but I think they have decided to bring the combined treatment forward as they always said this would be the most effective way of treating it. After the first course of chemo I had quite bad acid reflux and a mouthful of ulcers, second time round I have been taking Lansoprazol for the acid which seems to work and no ulcers this time! Other than that at the moment I got a bit of dry wretching but my appetite is fine.

Thing is after the first course of chemo about 10 days in and feeling ok I started deteriorating, nose more blocked and blood constantly running out of it, started getting absolutely horrible headaches and nose swelled up with a big blood clot on the right side. Hopefully it doesn't come on like that again this time but I'm making the most of the days when I do feel relatively normal. 

I'm the same as you, the family have been fantastic so supportive but you cant help but feel a bit isolated when you feel there is no one else going through what you are.

Lucky for me you made yourself known but I can imagine it must have been hard for you. If your anything like me for some weird reason I would look for some ones situation to almost mirror my own to give me that bit of reassurance. 

Hi Chippy, you've really had a tough run of it. God bless u. The ulcers are awful, I dodged the ulcers all the way thru chemo, except a few wee niggly ones, it was during the radiotherapy that I took mine. I found rinsing with aspirin numbed them although it's very painful to do! After my radiotherapy finished and the ulcers were at their worst, I got Fluxocillin and that really helped, I wished they'd gave me that during therapy! If the ulcers come back u should ask for it, it's a pink liquid and u keep it in the fridge, 4 doses a day. 

I only had 2 bad nose bleeds during chemo and none during radiotherapy, I haven't had 1 in months actually! And yours will stop too! Unfortunately there's probably nothing u can do about those... 

Yes I totally get that Chippy, although a lot of people on here have had similar or the same treatment it's still good to connect with someone who has the exact same type!

Were your tumours visible on your face Chippy? 

Because the part of the tumour in my sinus is more right sided when it starts pushing on the eye I can notice it under the skin between my right eye and  nose a bit but not massively. Did you get ringing in your ears and the occasional lights in your eyes? Were your tumours really visible  then Dee?

Yes I had a wee lump at the left side of my eye at the top of my nose and a lump on the roof of my mouth, then I took another lump at the other side of my eye on the right side and it kept growing, the lump eventually went from the left, across the top of my nose and to the right, it stuck out more on the right side. I had such ear pain with it, like a constant stabbing pain but no ringing, I took the ringing with the chemo. I didn't have lights in my eyes Chippy but had extreme photophobia and constant watery eyes, I couldn't look outside without it being very uncomfortable! 

Wow, it sounds like you had a nightmare with the lumps. I've only really had trouble with the one side and at its worst daylight and even a slight breeze was causing me quite alot of discomfort and eye watering so I hate to think what both eyes must be like. So you experienced the ringing ears with the chemo then Dee, well that might explain why I'm getting it at the moment. 

Yes defo Chippy, with me it went from a strange low hum to a screeching noise! Quite unsettling! Its called Tinnitus, mines def came from the chemo as I'd never had it before! 

So u had the blocked nose too? I sounded like I had the cold all the time. Did u lose your taste and smell Chippy? 

Yeah had no taste or smell for months now, It  has made a brief reappearance once or twice during the chemo but quickly goes again. Did you lose yours and has it come back at all? 

I'm assuming you got the all clear quite recently, how is the recovery going? 

Hi Chippy, I lost mine over 2 years ago, i had minimal taste in that I could distinguish between sweet and savoury etc but after radiotherapy I had nothing! Everything tasted like salt for a long time, slowly but surely that went away, now I can detect sweetness but that's all. I'm told that's a really good sign tho so I remain positive. 

Yes I got the all clear 10th June, 2 weeks ago! 

I'm getting on rightly Chippy, issues with saliva and taste, no smell but I'm used to that, eye issues from the radiotherapy. But I'm in good spirits and that's soooo important Chippy, even at my siest I still stayed positive, after my diagnosis I worked right up till I had the picc line in, I went back to work on the actual day my picc line was put in, and im the store manager of a shop and its bloody hard work! Straight away I took the attitude that I was NOT going to lie down to this, I was gona rise above it and not let it rule me, I refused to be a slave to fear and negativity! And that really worked for me! I've had a few wobbles but I've recovered my thinking quite quickly.

How quickly were u diagnosed from ur symptoms started Chippy?