Been away from the site for awhile. Just completed my first week of radiation and chemo, start my second week today. So far so good, however I know the worse is yet to come, six more weeks. Had a port and peg installed. Taste buds are fading fast. I have missed a few work days so far due to the port placement and feeding tube. I hope to work halfway through the treatment and then take off for awhile (Feb & March). Would appreciate any insights as to what to expect nexy. Thanks.

Each of us can respond differently and you will hear that a lot for the next 2 years so you might as well just answer yourself the next time you ask a question. lol

That said most of us loose our taste almost totally in stages; loose weight; loose the hair on the backs of our heads; loose our whiskers; develop painful mouth sores; loose our voices for a short period; become nauseated; get dehydrated; develop constipation; produce a massive amount of thick saliva before developing dry mouth and may develop swallowing problems and thyroid problems. You may of course have none, some or all of these. You also didn't mention if you are getting chemo as that can add to the severity of some of these things mentioned. Most don't feel the brunt of our Tx until about the 4th week and most have the roughest time the 2 to 3 weeks post TX. All I am left with today is maybe a 5% dry mouth; a 5% lack of taste and Hypothyroidism compared to my pre Tx normals. These are the physical side effects and you may also have to deal with mental issues. Point of all of this doom and gloom is to let you know that if you develop any of these side effects you are just NORMAL and don't let any inexperienced doctor/nurse/whatever lead you to believe otherwise.

I'm sure others will add to this post as we all had our unique moments during our Tx and recovery.

Oh David!!!! Dont scare the poor guy so much. These are all side effects that are annoying and uncomfortable and yes, normal. It can get difficult but you will get thru this. Looking back it was only a few months of my life that I felt crappy and miserable.

Just remember to keep up your nutrition with minimun 48 oz water and 2500 calories daily. Getting more is even better. The better your nutrition, the easier it will be to get thru this. Make sure even with the feeding tube you continue to swallow daily. Even if it means taking small sips of water all day til you get the whole bottle down. Some members would put the bottles they needed to drink on their kitchen counter and when they were gone then you knew you drank enough that day. Keep eating as long as you possibly can, try your best to eat thru the whole thing. Chewing and swallowing are things that your muscles can forget how to do if they arent used.

If you havent started this yet, its ok. Make sure you do stretching exercises for your mouth several times per day. Open your mouth as wide as possible and hold it open for a few seconds. This is very important so you can avoid trismus. Thats where you can barely open your mouth.

Let me know if you need any pointers about using the peg tube. Im full of tricks to make it easier. The peg tube is an easy way to get additional water too. Just add an extra can or two of water to your formula. I always mix mine with some high protein powder, that helps healing.

Hang in there. It will get difficult but we are here and will guide you thru this.

Hi Buster: I am a few steps behind you. Will probably start radiation/chemo on 1/31. I don't have much insights to share except to say hang in there. You can do this. And I can, too. I am glad that I found this site. I will be looking our for your posts and praying for the best. -Michelle

Hi Buster and welcome to OCF. I have been away for a while but the wonderful people on this site were a HUGE help to me. I'm sorry you are going through radiation but you will get through it. Especially with the support of the people here.

I did not have radiation so I'm sorry I personally will not be much help to you. I always have an ear though!!

Buster,
I start rad & chemo this week, actually on Thursday. So I don't know anything from personal experience,but it sounds to me like you are doing great so far!

I believe in being prepared, ok, but when it comes down to it, taking one day at a time is not a bad philosophy either, especially when you trust your medical team. I asked for advice too, and I got some great ideas here. Know that you can always come to this site to ask about your side effects, etc, and it is impossible to ask your doctor everything I know.

It probably won't be easy but you're going to get through it!
Anne O

I will say this, like others have said, everyone is different. Some fly through this with very minimal side effects. Others, like myself, have one heck of a time.

I will say I have not heard of one person that received radiation being able to continue to go to work past week 3, but that doesn't mean it can't happen!

I developed mouth sores week 2, was unable to eat or drink anything starting end of week 2, had a PICC line put in that is like a iv going straight to your heart because peg couldn't be placed till the beginning of week 5, so I went 12 days without eating or drinking anything before they put the PICC in. Most of my issues stemmed from my nausea that they just couldn't get under control. I personally think the thick mucous would cause me to gag and be nauseated, cuz i think my stomach would just get so full of it. But it probably also had to do with the other issue I got when the put the peg in as well.
They took it out, but had to put it back in shortly after PEG placement cuz I was having issues and wasn't even able to get 1 can in a day through it, but most people can use it and get 6 cans in a day no problem.

I had a dry mouth first and then the thick saliva came, and I lost my voice around week 5 for about 3 or 4 weeks. Lost the hair on the back of my head, maybe about a inch or 2 high but from ear to ear (radiated areas).

I tell you all of this not to scare you, but just to share experience.

If I would have known what was going to happen to me before I went through radiation, I still would have gone through it. The fact that I am alive and 6 months post treatment and as far as I know still cancer free, 6 month scan result to come on monday, is reason enough to go through everything I did. I had a total of 7 months of "hell" time, and I feel very fortunate, as like i say some go much longer or some shorter with the time frames of treatment and as i call it "hell" time, but i will say this, even if this comes back, i am still glad i went through all i did, as it's kept it away for this long!

Thamks for the continued words of sopport, don't worry about scaring me as I have read enought to be scared and worried, but also hopefull. "Bethers", sounds like you had a tough timr, glad it has pasted, and the out look is good. I just finidhed my 2 nd week of radiation snd chemo, a couple of days of naseau, but better now.

Buster:
As most have already said, everyone responds differant. I had a much easier time than most....luck, genes who knows. But like David CPA, I found the last week of treatment and 2 weeks post treatment the most difficult. In hindsight, I should have drank more water and gotten more calories those last few weeks. ( I did not have a peg).That being said after the 2 weeks post treatment, each day there was improvement in everything and for me it came rather quickly. Although as time goes by some of the details seem to fade away. 3 years out I am at 97% and have almost no side effects. Once in a while I will eat something that seems to taste differant than I remember, occansionaly some ringing in the ears and some neck stiffness but overall I feel great. You can get through this and be for your know it the bad stuff will just be a fader memory. The key is to follow the advice of these posters and learn what to do and not to do. Good luck in your fight.

Buster, good luck with everything. Its like a full time job going thru treatment and keeping up with the meds, nutrition, hydration and jaw exercises. Keep posting and asking questions. We will be here with you all the way thru.