Hi all,

I am almost 90 days out of Chemo/Rad. I am back to work and eating human food with the occational bottle of ensure. Today I had a wopper combo meal for lunch. It taste almost normal but I still can't taste the sweets stuff. By the end of my meals my throat gets a little sore. The pain lasts 20 mins then I am OK. Life is returning to normal but it is NOT a staight line.

I do have a couple of question/issue that I have not seen discussed on this sight yet. The muscles in my neck are sore. All of them. I have my wire rub them and it hurts a little. It also hurts a little when I turn my head and the muscle strech. Is not awful, but it is a nagging, odd felling. Has anyone noticed this?

I also think my thyriod is harder and may be larger. I really can't tell for sure. My ENT did not say anything. It could just be my skinny neck. However are there any thyroid issues that I might run into?

It also hurts to open my mouth wide. I seem to have a hard knot or a ball of muscle in my cheek on both sides that hurt when I open wide. I rub and strech it daily but it is annoying. Does this go away?

Pet scan 2/20 fingers crossed.

These are all things Kevin has complained about too. I think they are a little better now. All in due time I guess.
Kathy

Congratulations on getting back into the world of eating. Sweets and breads were the last thing that came back for Jeff. He often said his neck was tight and sore and I kept telling him to do his exercises and stretching therapy and it did help. It did improve and he hasn't mentioned it in quite awhile. You have come a long way and it always great to see someone on the other side of treatment.

Congrats on the great improvements!!! Eating a whopper meal is quite an accomplishment!!! So glad you posted this as it helps others who have recently finished.

The tightness in your neck muscles and jaws needs to be addressed. You will need PT exercises to work these muscles. Massages and stretching will help so keep working those muscles. On your next check up discuss these things with your doc and ask about seeing a PT.

Thyroid is another issue many of us deal with after rads. This should be brought up with your ENT on the next visit, but dont put it off too long. If you dont have an appointment within the next month, make on to get this checked out. Many of us have our thyroid fried and end up taking lifelong thyroid meds (myself included).

Your improvements will continue over the next year. Keep up the great progress

Hockeydad,

You should have a series of neck stretches to do for life and often AFTER PT. fo us on the scalenes as they cause the most referred pain and can cause pain even in your feet. Stick with a PT that works with radiated tissue first then find a Chiropractor that specializes in Active Release Technique for best results. Massage and such should be from now n as well for best comfort.

Unfortunately your jaw pain is from the radiation too and may or may not improve. Likewise thyroid and other things that got radiation need t be watched which your team should know. One trick is to find a group of doctors to manage the symptoms after the 5 year mark. In my case that magic number seemed to signal less overview afterwards. Just my opinion. Non-cancer type of docs were always hesitant to get involved post treatment as well.

Ed

I completely agree with what Uptown said. The head, neck and mouth exercises are so important throughout treatment, and especially after treatment, in order to maintain mobility. The real scaring starts as soon as treatment stops. I'd get to work with a speech therapist at your oncology center to get a full range of daily exercises going, otherwise your range of motion will likely get worse.

This is one of those areas that caregivers can help out, remind our loved ones. My husband came through treatment very well, did the exercises, slacked off and started to pay the price. I really got on him, reminding him we didn't go through all of this for him to lose the ability to open his mouth wide enough to properly eat food. The role of bad cop does not end with the last day of treatment.

Hockey Dad

Radiation fibrosis in the neck is extremely common. I also recommend getting a prescription for physical therapy for your neck. Being unable to move your neck without pain a full rotation is so common, my CCC nurses called it: Wooden Soldier Syndrome.
Please go through all you old blood tests to see if you even had a TSH or thyroid test. Unfortunately, most cancer doctors do not take a baseline TSH before treatment, instead they rely upon the lab ranges of normal to test afterward. Sadly this is medically incorrect IMO since the lab ranges are so large for normal. 0.3 to 4.5 as to be individually meaningless. You want to be what you were before. I have discussed this a lot and really need to add this to all my welcome posts instead of just some.
Not opening your mouth is called Trismus. Here is the full OCF web page info on that OCF trismus I still use my Therabyte 5 years out.
Charm

Vince still uses his Therabyte too, really great device. Or at least he leaves it strategically laying around to make me think he's using it, must check up on the boy...:)

Thanks.

I did the pre-treatment TSH measures and I have that number. I was more concerned about C cells finding a new home there.

Thanks for the info on the Therabite. I knew they had to be something better than my fingers. My speech therapist gave me some tongue depressors and showed me that trick. I'm sorry but that method is stupid. They work but you would need thousands of them. I would use 9 at a time and they would get a little nasty after a couple of uses.

I called my RO to see if he could write a prescription for the Therabite. The nurse will review it with him and they will let me know. Amazon has it for $540. If they don't I might have to fork over the cash myself. I will take anything but my fingers at this point.

By the way, the link on Trismus section on the OCF page does not work.

Hockey Dad

Good that you have the TSH number. The radiation does a number on the thryoid. Haven't seen too many posts about getting thyroid cancer.
The link works when i click on it but here is the naked URL to cut and paste in the browser
http://www.oralcancerfoundation.org/dental/trismus.htm

Heads up the Therabite gets very very nasty very quickly as the pad fall off and get goopy. I ended up just putting scotch tape over them and leaving on the tape and changing the tape often. It is way way overpriced, so push for a script.
Lots of people here did make the tongue depressors work, I couldn't.
Charm