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Hi everyone, I'm not very good with tech, and I've never really done any web chats, embarrassing for a 42 year old I know but bear with me!
I have been diagnosed with a snuc during lockdown that has spread to the lymph nodes in my neck and also into the brain cavity. I have had 2 rounds of chemotherapy so far and I am due to start a combined chemo and radiotherapy treatment on the 13th July. It will be radiotherapy 5 days a week for 6weeks and chemotherapy once a week during those 6 weeks.
I'm just wondering if anyone has had a similar treatment in a similar area and could offer me a bit of advice about what to expect, I've been told it probably will be quite hard going but any helpful advice or pointers would be really appreciated.
So sorry you are starting this journey. SNUC is quite a rare cancer and there are not many people here dealing with it. If you put sinus cancer into the group search box you will find a few posts. I don’t quite know where the RT is being targeted. Have you any neck lymph nodes affected? Has your oncologist gone through the side effects with you for your consent form? RT targeted at the neck and throat can cause severe mouth and throat ulceration and neck “ burns”
longer acting side effects are a lack of saliva a dry mouth and loss of taste. There are lots of ways to ameliorate these. I’m 16 months post RT fir base of tongue cancer. Have a look at my blog. It might help.
Otherwise pop back here as and when you need to sort out what’s happening to you. The best piece of advice I was given was to stay in touch with your Radio team who you are seeing daily, be honest with how you feel ( no brave faces ) so that they can get timely help for you regarding pain control and nutrition
Best of luck
Cheers Beesuit, I have gone through the side effects and consent forms for all the worse case scenarios such as partial sight and hearing loss, loss of taste and smell and slight brain damage so that was a cheery meeting as you could probably imagine!!
The cancer has spread to three lymph nodes in my neck so that area will be targeted as well as the skull base inside my brain cavity.
I'm going to read your blog this afternoon, thank you so much for replying to my post I really appreciate it.
Not everybody gets all the bad bits. have you a Macmillan team at the hospital as well as a dedicated clinical specialist nurse? They have more time to spend with us than the consultants generally though there are exceptions. My two consultants were very compliant and spent a lot of time with me.
Check out RadioactiveRaz
She has a much better blog than mine with lots of pictures
sorry you’ve found yourself on here my cancer was tonsil cancer with several affected lymph nodes I had 35 radiotherapy sessions and 2 x10 hour chemotherapy cisplatin. Like Beesuit says nit everyone gets all the side effects .Best advise I was given was leave google alone as you can scare yourself silly. Stick to on here or cancer U.K. sites. Write questions down ready for your next meeting. I have a blog details below it may help you feel free to ask any questions someone will always try and reassure you. Plus painkillers don’t be brave use them .
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com
i give a honest account of my experiences with tonsil cancer
T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions. Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can
Hi Chippy, I hope u are holding in there.
I too was diagnosed with SNUC in September last year and have just got the all clear. I just can't believe there's someone else on here who has it, I've searched and searched and googled since last September and could find no info other than case studies, no real info.
My tumour filled my whole nasal cavity and was 6cm, had gone through the cribriform plate but not through the dura. I had big painful lumps coming through the top of my nose between my eyes plus all the other symptoms...
Are u having 3 rounds of TPF chemo Chippy?
Hello Dee, I'm so happy to hear you got the all clear, that's great news. I have had 2 rounds of cisplatin and flouroracin chemo and I'm due to start my combined radiotherapy with a dose of cisplatin each week on the 13th of July. 6 weeks of radio 5 days a week.
I was at the hospital all day yesterday having my mask made and all my scans done. Met with my oncologist after and she has told me that the scans show the tumor hasn't retreated from the brain cavity but it is shrinking in the sinus and the lumps on my neck have shrunk too due to the chemo. The bit in the brain cavity was the bit they really wanted to see a big change in but not this time unfortunately.
Hopefully the combined radio and chemo will sort it but it will be significantly less powerful radiotherapy in the brain cavity due to the fact they are only allowed a 5% risk margin for damage to the eyes and brain.
Cheers for the heads up about your blog Hazel, I will have a look.
Good advice about Google and pain relief too, I'm a bit of an ostrich anyway so tend to bury my head when I don't like the sound of something! But the pain relief, that's been a learning curve, take whatever you need and dont try to put up with it!
hi chippy,ive had radio/chemo at weston park hospital 10 year ago,and i must say the radio is a doddle you wont feel a thing at all,i ended up having a bit of a laugh with the nurses who do the treatmean they get to know you after going day in day out,that was 10 year ago, by the way it will b all thumbs up for you now,good luck
Cheers for the message Hugg, sun is shining outside, good positive message from your good self first thing in the morning, its shaping up to be a good day.
Hi Chippy! Chippy don't be disheartened that it hasn't came away from the brain cavity, I had the same response at the same stage u are at with ur treatment in that the tumour had shrunk and broke in two but hadn't came away from the cribriform plate/anterior cranial fossa, exactly where they wanted it to come away from. So don't lose heart with that news, the good news is that it has shrunk, try and focus on that.
Chippy drink loads of water to flush everything out of u, they told me that the amount of water I drank was my saving grace! (2 litres a day)
Do u take vitamins etc Chippy? I know u can't take vitamins during chemo but once it stops u can take them although check with ur oncologist. i take loads of different ones but Cytoplan CoQ10 multi is a good one as it helps with cell regeneration, I don't know all the technical stuff but I was told by a PT friend that I'd be on these for the rest of my life, there quite expensive but apparently the best lol.
Take really good care of your teeth Chippy, the radiotherapy might leave u with no saliva and there's good bacteria in your saliva that helps protect your teeth so having healthy teeth in the 1st place will stand u in good stead.
It's good u found this forum so early on Chippy, I only discovered it a couple of weeks ago and wish I'd found it during treatment cos it would've been invaluable to me! Beesuit and Radioactive Raz have a wealth of helpful information that really helped me, so ask all the questions u want and I'll try and help u as much as I can too!
Main thing is to stay positive Chippy, stick 2 fingers up at it, be stubborn and stay brave!
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?
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