Sinus cancer.

Hi Chippy hope you are your family are okay how’s the treatment going?

helen 

Hi Helen, yeah were all fine thanks, how are you all?

Treatment is starting to bite a little bit now but I'm prepared for it to get quite alot worse! 

I've been in hospital since last Saturday because I was throwing up and not holding anything down. I don't think it can be completely sorted out but just managed as it's just a symptom of combined chemo and radiotherapy. Also where I have quite a substantial nasal pack in still, that has started to break down and was dripping down the back of my throat, the nurses said that swallowing that would cause vomiting aswell. Other than that its standard treatment side effects i think. Extreme tiredness, blurry vision and headaches, which is why I haven't been posting on here as much! And the throat and mouth are starting to get really dry no matter how much I drink. 

How's your dad getting on, and how are you all bearing up?

Chippy.

Hi Chippy I’m sorry to hear you are going through this hard times an oncologist told me that the side effects you have means it’s working but it’s still not nice to go through hope they can get the sickness under control 

dads ok his managing day by day we have finally got his first oncologist appointment through which is this Tuesday it’s terrible how time is at a essence with this evil disease but they don’t seem to rush anything

dads specialist nurse called us this week to let us know dads results from his pet scan unfortunately it’s spread to his lymph nodes, liver, lungs and bones

we are waiting on a plan of action to see what the oncologist can do to relive dads pain and symptoms 

hoping you be home soon Chippy with your family always thinking of you and your family Chippy 

Hi, I just been diagnosed with SNUC, and am having a full maxillectomy. The rare thing has made it hard to find info. It’s early on in the journey for me although the tumour is ‘very large and aggressive’ according to my diagnosis letter. I hope treatment goes well for you.

Hi Tiggytoes, sorry to hear of your diagnosis,  its not a journey any of us want to make but all my thoughts and best wishes are with you. You've found the right place here, everyone is so helpful and any advice we can give you to help you through this we will. 

SNUC is rare but dont let that get in your head, if they're treating it, it means its treatable, that's the way to look at it.

I'm about halfway through my combined chemo radiotherapy now and the side effects are starting to bite a bit, hence why I'm not posting as often at the moment, but I will be trying to get on here as often as I can from now on so if you want to message me about anything at all feel free! 

Hi Helen, sorry I haven't been in touch for a while, how's your dad, any more updates, how are you all coping. I've not been on for a while due to hospital stays and side effects so I'm kind of checking in with everyone to see how they are doing. 

Chippy

Hi Tiggytoes, welcome to this forum! So so sorry to hear about ur diagnosis, and it is so hard to get info about SNUC, I struggled for months and couldn't find anyone or any solid helpful info, then I found Chippy! 

Tiggytoes, mine was also very large and aggressive but I now have the all clear and am in remission! Try not to believe all the horror stories surrounding this awful disease, there has to be some success stories, right?! 

And as Chippy says, you've came to the right place, the people on here have helped me immensely, even though it's different cancers, the affects of treatment etc is basically the same. 

Good luck Tiggytoes  

Hello Chippy, really good to hear from u, I really hope u are doing as ok as u can be and still sticking 2 fingers and toes up. 

Think about u and ur family every day and always sending u best wishes across the pond

Just popping in to wish you all well with your treatment.  I noticed I'd been mentioned upthread.

Although my tumours were caused by lymphoma (they were originally presumed to be caused by SCC), and therefore my treatment is different, the largest one occupied a quarter of my face so I had extensive destructiion of bone, my eye was displaced to the extent that I couldn't even open it for a while, and one side of my face was numb and immobile.  My tumour also came down through a tooth socket and effectively turned inside out on the roof of my mouth (that hurt as much as you might expect).

I have now finished chemotherapy and will have a PET this coming week to find out whether I need any radiotherapy. My lingering symptoms at this point are a small patch of facial numbness (which should go away in time - nerves regenerate slowly), a feeling of fullness and pressure in my sinus cavity at times (I used to get this pre-cancer - I've had sinus issues for a very long time), and a small amount of residual neuropathy in my feet (this is from chemotherapy and getting better each week).

I'm telling you this because I know how hard it can be at the beginning to imagine severe symptoms getting better.  We're so focused on just staying alive and halting progression.  But they can get better and they often do.  Sometimes rapidly and sometimes slowly.  Sometimes partially and sometimes fully.

You have all my best wishes as your treatment progresses.  Make sure to celebrate the little wins along the way.

Hi Chippy,

Dads doing a bit better I think the steroids his on is helping the symptoms a bit he starts chemo on the 14th his got three sessions and then we will go from there I hope the side effects get better Chippy always thinking of you all you got this