I hope you're doing well by this point. I am a 19 year survivor of your same tonsil cancer. Surgery and 35 radiation treatments May - August, 2000. I was also 44 when diagosed. Happy to answer questions if I can help. Blessings,
Moore, OK USA
HI Cath....The staff there are just wonderful...My oncologist is Richard Khor, I really couldn't have asked for better care and support through some of the darkest days of my life. Wonderful people.
I finished just before you in Feb 2017! So we are both sitting at that all important 2 year milestone. How are your follow ups? Regular PET and MRI?
I have just undergone surgery and currently due for my radiation therapy. I was going through all the threads and this has been really helpful in preparing myself for the upcoming tyranny.
Hi Simon et al
Your posts have been enormously helpful for me as I help my mom in her recovery from tonsil cancer. She's at about 6 weeks after the completion of radiation (concurrently with Erbitux ) and about 3 months after neck dissection.
So much of what you've all shared has been reassuring. The crazy mucus, the radiation burns and the pain that absolutely sucked after the treatment was over and we thought things would start getting better.
Anyway, one thing I haven't seen and want to ask about is neck cramps (cervical dystonia?). Her neck started to get knotted and tense a week or so ago, but now it's totally cramped and locks up to where she can't even sit up without massive cramping and seizing. It's affecting her ability to sit up, eat, sleep, etc. She's on day 3 of this and I'm worried about her losing a ton of weight again. She really can't afford to lose any more.
I'm getting her some massage and physical therapy, but does anyone have any ideas for something that can help with immediate pain relief or getting things to uncramp? (She's taking some muscle relaxant and ibuprofen, but neither help much). We even tried CBD cream and biofreeze but nothing helps. Is this going to be a long term side effect?
I've read that radiation fibrosis can set in any time after treatment (like a week to even 6 months later).
Anyway, thank you for sharing all of the experience and advice; it's been tremendously encouraging and supportive!
Wishing your Dad all the best! All of us are different and what might affect me may not affect your Father. Several weeks into treatment you will feel fatigue but you wont spend all day in bed. Yep your dad will be able to go for walks and if He feel up to it He can drive. I managed to wash and detail my car but damn... I wish I didn't, it totally wore me out.
I'm onto my 7th week now of treatment and three days ago my voice became raspy and squeaky, sometimes, I can barely whisper and there is no way I could yell. It does become difficult to try maintain conversation well, it does for me.
Skype or whatsapp may be fine for Him if he can use them.
Thank you all for the words of encouragement it has kept me chugging along. I'm really in the dumps at the moment with these side effects. My neck is all bandaged up from Rad burns and skin peeling, I have almost lost my voice.
Nothing by mouth it all goes in the NG tube...including meds, I grind them up and put them down the tube.
Tatse, Smell etc all gone.
Thick ropey mucus...my god, its driving me insane. I have grade three mucositis so yeah mouth pain is quite bad. my radiation Doc managed to convince me into doing three high does radaition sessions when I officially finish my course of treatment on Wednesday. This would have taken me through to last session being Monday. This was just to give me a slightly better chance in the long run.
You know what? Over the weekend feeling misrable and just wanting it all to stop I decided stuff it! They can stick those extra 3 sessions up where the Sun don't shine. 😄
So i'm now back the original plan 35 doses of rads ending Wednesay and Chemo finsihed. And no, i'm not ringing the bell at the end of treatment out of respect for other patients there who will remain on treatment until their time is up.
Thank god, i'm tired! I just want my life back, to taste food again, to smell as before and to eat as one is intended to eat through the mouth.
Head and neck cancer is bad, as are all cancer's. Treatment for head and neck cancer is hell!
I hope everyone is doing well and again thank you. Sorry if I may have stressed some out with the side effects you can go through.
Sarah, sending your Mother my best wishes. Sorry I cannot be of help with your question. Perhaps try specialists in this field. Have a read here : https://www.mayoclinic.org/diseases-conditions/cervical-dystonia/symptoms-causes/syc-20354123
I mentioned these weird, insidious neck cramps that started happening about half way toward year 2 post-treatment, I think these late effects are under-recognised and worth mentioning for anyone who has been researching what to expect.
So effects that creep in late-game (a year or more post treatment):
Fibrosis/Cramps: it's the radiation damage that gave birth to these fun adventures in fear and pain - basically if you had one or both lymph nodes blasted, there's very likely to be scar tissue and fibrosis where you open your jaw, so any kind of movement can stimulate the cramps .. like a yawn or chewing or whatnot. The cramps themselves are like .. a creeping muscle cramp in the side of your face .. a bit like the leg cramps you can get when you overdo running or don't stretch (but a bit less painful). On the pain scale I'd say "moderate", like ... 5/10 ... but they're disturbing because it's your face. I haven't tried physio, the doctors say massage and moisturising help, but ... yeah, it's likely to be something to deal with for a while. For me it started at 1.5 years post treatment and now is continuing with at least 1-3 incidents per week, at 2.25 years post-treatment.
Thyroid Damage / Weight gain: if youre gaining weight at all, get your thyroid tested at your earliest opportunity, before the problem starts to snowball. It's another result from radiation damage, you can suffer from 'radiation induced hypothyroidism' (or something like that), and it causes fatigue, slowed metabolism, all that fun stuff.
Still, all great problems to have, if they're the cost of remaining among the living. It's important, even when dealing with multiple issues, to maintain a positive outlook and find fun & enjoyment in your life.
One other mid/late effect post treatment that I haven't mentioned at any point (because it's superficial) is wattle-neck. You can get a dangly kind of neck a bit like a turkey (but it looks fatter, not wrinkly). Its water retention from under-performing lymph nodes, if one or both got blasted by rads, you can expect to have a .. danglier, fatter looking face.
If you've already gained weight from the thyroid damage, it can make you look like a big ol' porker (I do at least), which can be demoralising as you don't enjoy food as once you did, and don't really overindulge, you've just taken a bad metabolic hit plus the underperforming lymph nodes.
Welcome to post treatment. I know it's not nice....it really is the pits but every day will be a tiny bit better than the last. Just focus on your nutrition and getting through each day, focus on what you can do to heal. For the mucus have you tried a neubulisor? I found that really helped me....I was doing saline neubulisor up to 4 - 5 times a day and even through the night, it really helped to break the mucus down so it can clear....until it starts all over! Steam is good too. I got a humidifier for the bedroom at night to keep the air moist. It all eases things but it doesn't really go away any time soon, it does linger on and gets slowly better. The aftermath of radiation can be really devastating....no taste no smell affects to hearing....But it is all a small price....see the bigger picture. Things do get better but it is a very very slow process. Don't try to get off your pain meds too quick, I was really anxious to "detox" after treatment kniavely thinking it would be a quick healing process. It takes time and I was on pain meds for a good 6 weeks post treatment, I slowly came off them. At the moment you just need rest and time to recover, keep up the nutrition - I know that can be really hard as you are probably over it all. But just keep going...it will all pass and sink into the distance very soon.
Noticed some comments about neck fibrosis and thought I would add my experience. As most of you know I am five years post treatment and somethings are only now settling.
The term the doctors at my ENT clinic used was Woody Neck. There is a hard mass on my jawline extending down into the neck. This is the scarring from the radiation. I don't get cramps as such but my jaw locks up from time to time. This is worse in the cold weather and I have to use a head pad on it.
Also have trouble with the ear on that side, tip of ear is very sensitive and sometimes feels like a spider or insect crawling on it. When it is cold if it is touched it hurts, fun when getting hair cut.
Also finding my jaw is out of line after having mouth wide open for dental treatment and it also aches more. Takes a few days but does settle.
When jaw "locks" up, I just do the exercises the speech therapist took me through when I first had my op. I was lucky in that my swallow and gag reflexs remained as before. The saliva issue is an ongoing battle so I always carry a bottle of water to "wet my whistle" when conversing with people.
These are some things that will never improve and you will find a way that works for you. Also my GP is one of the best support people along with the Primary Helath Care nurses at the G
Now I am focused on caring for my disabled husband and having lots of fun with our beautiful grandaughter who will be eighteen months on Friday. I mind her one day a week and sometimes over night on weekends wheh her parents have a night out. This is the best medicine and I than the medical who worked their magic so I can be here to enjoy this time.
All the best to everyone, Just hang in there and take one day at a time.
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