Good Morning everyone! I'm new to this forum; I decided to join to learn from others (and hopefully share with folks some positive vibes!). I was diagnosed last fall with tonsil cancer. I had 7 weeks of daily radiation and once weekly chemotherapy during those 7 weeks. I was hospitalized last January w/pneumonia and was released after 4 days-PHEW! I was able to finish my last 3 radiation treatments by January 20th. My PETscan in April was clear- WOOO-HOOO! All follow up ENT nose-throat camera views and CT's clear. My feeding tube was removed June 12th. I have found recovery to be almost more challenging than the days of treatment...it's really a giant mental game. But, despite losing 30 lbs (I'm maintaining my weight at 118 these days; had dropped to 112), I feel my energy's back and I'm fit both mentally and physically. I have lymphedima in my neck so I use a compression suit daily for 32 minutes which works well. My eyelids can be prone to blepharitis now so no mascara and diligent optical cleansing twice daily. Eating is a project- small bites and lots of chewing to allow swallowing. My mouth (including my tongue) feels like I drank really hot coffee and is burned. I have to be anal about oral care: 3xdaily brushing, rinsing and fluoride treatments. Taste is weird...Has anyone else had these experiences? How long did it take for your taste to come back?
Hi Movin On and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis and the journey you have been on.
The fact that you have used the words 'last fall' infers that you are not in the UK........ This community is primarily based in the UK so it's important to remember this as there could well be differences between treatments and post treatment support.
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated Head and Neck Support Group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….
……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
Do get back to me if you need further help navigating the community.
Hi Movin On
Im Dani and I hang out in the head and neck cancer forum that Mike has signposted you to I’m coming up to six years clear of treatment
Click on Mike’s link and join us there.
My mouth (including my tongue) feels like I drank really hot coffee and is burned. I have to be anal about oral care: 3xdaily brushing, rinsing and fluoride treatments. Taste is weird...Has anyone else had these experiences? How long did it take for your taste to come back?
That feeling is called burning tongue. It’s a kind of neuropathy. It will likely improve but you might find you have triggers if you keep a food diary.
OTT oral care is normal and will have to be permanent I use high fluoride toothpaste and have a fluoride varnish every three months.
Taste took me a year to normalise.
Much of this is par for the course
By the way, are you in the USA?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Yes- I'm an American, and NO, I did not vote for the felon
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
