hello there ...this is my first post...my husband has been diagnosed with sqarmous cell carsinoma of the base of the tongue.and lympth nodes only in throat.... very aggressive cancer caused by the hpv16 virus and triggered by smoking, only he has never smoked or been around passive smoking... its all a bit confusing...he is only 40 years old fit and strong with no real symptoms only coughing up a lot of green phlegm.... he is positive and has an awesome attitude.... I have too...never once entered our mind of anything but a cure which is achievable.... its exhasting watching the person you love go through all this and still workiing, children and life...... he has been in intensive care after swelling during biospy, then again after teeth were removed and feeding peg put in so he ended up with trachy in.... thankyou for reading my post.... nelly
its devastating news, and me and my partner really hope your husband can beat this. It's really frustrating when dr's associate smoking to cancer, however alot of us that get diagnose with the c bomb, haven't smoked. I tried when i was younger but got sick with asthma.
There is a fair bit of new literature surrounding a head and neck HPV cancer.
The treatments can be tough, as you most likely are aware. They are doable and there are things that can make life easier. Self caring is incredibly important in my opinion. IE mouth washes and salt water soaks etc.... on the radiation site.
I had T4 N2 tumour base of the tongue, trachea in place from the outset and a peg tube for nutrition (beats the old nasal gastric by miles).
All my best to you both.
This looks like an old post. But I will try anyway...
I had Follicular Dendritic Cell Sarcoma which is fairly rare cancer to the neck. This was removed & followed head & neck radiation treatment.
Results are showing I am all clear. Which is fantastic.
Just wondering if anyone has experienced cramping & spasms of the neck, Lymphedema of the face & brain fog.
We have had different cancers, although most likely similar treatment. Brain fog from chemo and also radio can cause this. It does get better and I found by starting out doing simple puzzles that did not take long to do and working up to doing more complex ones helped mine to get better, although still a slight residue there 3.5 years later. I had no neck dissection but do know that others experience the cramping etc... andyou might find a tens machine may help, physio/massage and maybe heat packs. Lymphodema massage is a good technique to learn. I went to a lymphodema specialist and she showed me how to massage and slowly I have learnt a good technique to keep that under control somewhat.
Good luck with your recovery and hang in there as it just takes baby steps and you will heal over time.
You know its a nice reflect to hear your experience. I have only just registered and I found my problems are getting more depressing. So I went in search and found this, the only other stuff I have found is info from US but from Australia is so good.
I will start with the puzzles & hopefully this happens. I do IT at work and troubleshoot all day so I am using my brain but it feels like I am having to constantly reassure myself that I am doing the right thing.
I did see an OT for the lymphodema and try to massage this daily, I also use a compression bandage at night. Just find it hard being up in to tropics the heat was ignoring at night to sleep in it. And I find now its cooled down my face seems to still be an issue.
The cramping is something I will have manage. It has only just started to come on constant maybe because of the it cooling down. I know its happening quite alot daily and the cramps last a good 5mins. I ain't take painkillers yet. I have found some sites mention about exercising that area so I will try that.
Thanks so much for your help... Great to hear you are all good after 3.5 yrs. Cheers!
It is tough when you first come out of head and neck cancer treatment. Just be kind to yourself and patient. 🙂 Baby steps and you should slowly but surely notice differences, takes work though!
I find that I now take a multi V, Magnesium and Vitamin D and if I take them regularly my muscles are wayyyyyyyyyy, wayyyyyy better than when I first finished treatment. I actually tore my rotor cuff tendon sitting on the couch, which sounds and now seems somewhat ridiculous but it did happen.
Whatever you do "gentle" is the guiding word. Just start slowly and you will know what you can and cannot achieve. Just keep looking back and recognising where you have come from and it will help you to keep going forward with it all.
All the best.
ps I have worked in the heat and humidity and now work 12 hour days and cope pretty well. Came from being a physical, mental and emotional wreck to that! 🙂
Thanks Julie. Its been a long road til here. I actually finished a year ago last Saturday doing Radiation treatment. So its been awhile since treatment, I think the first 6mths recovery was harder with fatigue/pain etc. Now its just a day to day management of the effects. I know I am a lot stronger than last year.
I just thought it was weird with my brain fog & having the cramping come on so strong and regular which my GP didn't seem to know much about.
I will try your advise on the vitamins. My GP did suggest the Magnesium so I will try the others as well and hopefully that should help.
Thanks for your time & help again Julie. Great chatting !
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.