I am a 50 year old male who has been fortunate to be in very good physical shape (6'4" and 180 lbs) Prior to my diagnosis/surgery, I have been active with both aerobic and anaerobic activities 5x per week.

I have recently been diagnosed with a T1N1M0 (HPV+) on my right tonsil tissue (I had my tonsils taken out as a kid). I had a MND on the right side of my neck in which they took out 18 lymph nodes, with one being positive. I just started today my first of 33 sessions of IGRT at the University of Miami (Sylvester). Due to the size of the source and only one positive lymph noce, the team (who have been excellent to date) are not recommending chemo. The radiation dosages that they are scheduling me for over the next 7 weeks are the following:

right tonsil area - 70 Gray
Left lymph nodes - 54 Gray
Right Lymph nodes - 60 Gray

With my weight at 180 being 6'4", I am concerned about losing to much weight and am going to do whatever it takes to keep my weight up (I am not scheduled for a PEG unless it becomes required)

A couple of questions regarding working out during my radiation treatments. Please accept my apologies in advance if any of my comments/goals are unrealistic or just plain dumb

1) I am planning to do light workout with weights for 30-40 minutes along with 20-30 minutes of light aerobic work on either the treadmill or elliptical machine five days per week. Is there any downside to this type and level of activity (assuming I keep my weight up)

2) Does it make sense to breathe through my nose instead of my mouth during workouts or does it not matter as I am concerned about keeping mucositis at bay?

3) Has anyone had any positive/negative experiences with working out while undergoing RT?

Thanks in advance for your help/suggestions/comments

I may have cancer at this stage, but not for long!


Sincerely - Steve

Steve, some people sail right thru their treatments while others struggle. Everyone is different. So it will depend on how you handle your treatments if working out is part of your routine or not.

Talks about your weight. It is on the low side for going into this. Your sense of taste will change for a while and eating probably will become more of a chore than a pleasure. Make sure to always swallow something every single day or you could end up having major problems later trying to relearn to eat and drink. Try to force yourself to eat all your favorites now and then have seconds. It would be a good idea to try to add a couple pounds as most of us have lost significant amounts of weight while going thru treatments. I lost 65 pounds and that was with a PEG. Doctors like to keep a person's weight stable with zero weight loss the goal. One a daily basis, shoot for 48 oz water and 2500 calories. This is something you need every single day, dont try to skimp one day and think you will make it up the next. It rarely happens when you try to play catch up. Your body needs extra calories while fighting the cancer plus trying to sustain you during the treatments. Maintaining your weight can become a difficult task but if you can do it then you may get thru it easier than most of us.

Talk with your nurse and ask about mouth stretching exercises to do daily. Another helpful plan would be to talk with a nutritionist. They can help critique your diet and make sure its balanced.

As far as exercises go, if you feel like you can do it then go for it! There are a few of the guys here who are very smart about this kind of thing. Im sure they will be able to give you some tips.

Hi there I too was a workout a holic - well I'd work out for an hour a day up until diagnosis - I did the elliptical a few times after surgery and during radiation up until it became too much for me - regardless for all except a week when things were the worst - I walked my dog for 30 minutes every day! And did some yoga! do what you can but as it becomes harder to eat your energy level may drop - at that point stick to things like walking for a bit and yoga and deep breathing if you're into that kind of thing - mucositis will hit you when it hits you breathing through your nose isn't a bad idea as - despite the fact that you are not getting chemo - you may have issues with immunity as radiation does a number on your system. Mostly though rads will make you tired. However if you arent taking in enough calories lay off the gym. bulk up now!! Good luck! It's not fun but it is doable... take care

Steve

I too was hitting the gym 5x a week for weightlifting, elliptical, as well as yoga and pilates classes. Like the old Cure song: "I had the best laid plans this side of America" to keep up a schedule similar to yours, but you know what they say about the best laid plans. The first week, no problem. The second week, a little weary. The third week, vomiting after class. The fourth week thru eighth week of radiation: couch potato.
The only downside is that the more you exercise, the more calories you will need and as Christine noted, that can quickly get problematic. I made it thru without a PEG the first time in part because I had so much lean muscle mass going into TX. I think you are ahead of the game by being in very good shape.
Keep the Faith
Charm

Thanks for all the great advice. I am in the second week and still able to make it to the gym. I am doing the elliptical and some weight, all the time taking controlled breaths while breathing through my nose (kind of like when geting radiation - but that is a whole different story). To date, I have been keeping my weight, eating tons of protein and calories (no meat or milk based foods as per my nutritionist). Throat does not feel bad yet, though I have this funky taste in my mouth most of the time

I have this minor headache starting this week, kind of like a bit of a hangover in the front of my head. I am assuming that it is the radiation. I will keep you all informed of my progress through the next two months.

I think I love your nutritionist - great advice. they are good rules to live by. kudos on the gym and the weight. You should be good up to week 4 take care!

Hey Steve,

Sounds like you're doing great so far! My husband and I both work out a lot too and my advice to you is to listen to your body. It will let you know if/when the time comes that you just need to rest. When my husband Ron was going through the radiation he was fine until going into the fourth week. Just remember, your body is going through a lot right now and will need rest in order to heal. Don't push yourself too hard.

All the best,

Shelley

Steve, keep up the workouts. I never quit keeping busy with physical workouts or labor. I am 75 and did go from 220 to 130 on the low end. Eat all you can and try to keep the weight on. As Chrisitne says, you will lose weight. I think we all have in the Forums but you can dstill keep in shape. I got back up to 174 but other things took it back off. Now as I go in for my lower jaw removalsurgery this Friday, I am pushing 152. Can't drink red pop as I would be mistaken for a thermometer. I look like a fish that has been out of the water for 2 weeks. Good luck

Thanks so for much for the advice. Just finished my 7th treatment today. I have put on about 6-8 lbs the past few days(now about 187). Overall the mouth and throat feel good (though I can feel that my throat is getting a tad sore). No problems eating yet, though my mouth has a funny taste to it. Food still taste OK.

The only issue to date is kind of a mild headache, reminds me of being a bit of the type of headache that you get when seasick.

Still at the gym but not pushing it too hard.

Laz,

good luck to you my friend, however just remember to listen to your body very carefully. It's very typical to get dehydrated during treatment and even more so if you're doing cardio work on top of it.

Headaches are generally a sign of dehydration (it could be a myriad of other things) so just make sure you are in constant communication with your MO and keep both fluids and electrolytes flowing (hydration is much more then just water as you are very aware of I'm sure). You're body will probably start talking louder and louder as treatment goes on and that's typical. Good luck, be safe.

Eric

Steve, you're a hero. By about week three, maybe even earlier, I was so knocked out I could barely make it to treatment every day. Forget about eating solid food. And you've even gained weight!

Keep up the good work!

Steve,
You have the right attitude to get through this and I commend you for for your approach of staying with your normal activities. Keep it up, week by week. We all have different experiences with the rads, but most experience some fatigue around the 50% mark. In my case, I kept up good activity until I hit the wall, and did my best to fight through albeit at a reduced level of activity. You are doing great, so stay strong, stay with your program and keep that positive attitude, day by day and week by week.

Bob

Eric - Thanks for the advice, I am drinking over 80 oz as per my Nutritionist. Of that number, about 50% of that is Gatorade (low sugar version)

I will step it up to over 100 oz.

Just finished my 10th treatment today, I am scheduled for a total of 33.

Food is starting to taste like shit, had a large grilled fish burrito tonight and it tasted kind of funky.

Mouth is getting dry at night. I need to buy a misster as I have heard good things about using one. Should I use plain water or would you recommend another concoction?

Best - Steve

Steve, I hear you about the taste of food. After a few weeks even water tasted metallic to me. Not that I was eating anything solid at that point anyway.

But the taste will eventually return. Might take some time and it's different for all of us.

As to the mister... why not? I've used one on and off and I don't seem to notice a difference. But of course you've got much higher humidity back in my hometown of Miami than we do in dry old LA.

I'd go with water. Unless someone else has a better idea.

Hang in there, buddy!

Steve

You young guys! Way to go. I agree with Eric (no surprise there) about headaches & dehydration mostly because I never had a headache from radiation or chemo.
I had a whole house humidifier which really helped the first time around plus when I could not work out anymore, I still went to the gym just for the steam room. But since mucositis is not too much mucous (which I thought it meant until I joined OCF) but mouth sores from radiation, I used seltzer water. It fizzed and burned a little but not only cleared up my mouth sores but also did help dislodge mucous.
You are doing great . But there is no shame in just letting this TX wash over you in the later stages. Not that it will happen to you, but I thought I was "tough" until my face fell off.
Keep the Faith
Charm

Probably by now you are not going to the gym. Most of us got so weak and/or fatigued we had to plan our day around the best time to sit in the shower. Calories become precious commodities as treatment progresses. You will need them for basic life support.

It's a bummer having to start over at the gym after an extended time off but it is what it is.

I would also have concerns about infections you could acquire in gyms (or any other public places for that matter) with a crashed immune system.

I am down to my last radiation session on Monday. I stopped going to the gym a week ago as I was feeling a bit run down and did not want to push things. I lost about ten pounds and feel that I am very fortunate that I have not had to take any painkillers. Though I have been taking Tylenol PM to help be sleep better at night. The throat is a bit sore, but I guess that is expected at this stage. I can eat most non-spicy/acidic soup and have oatmeal with bananas for breakfast.

I supplement that with Chocolate protein shakes two to three times per day. Recipe is as follows:

Chocolate Why Protein - 1 scoop
Glutamine - 2 tbs
One raw egg
either Swiss Chard or kale
raw almond butter - 2 tbs
Chocolate Hemp Milk
4-5 Ice cubes
Mix it up very well in a blender.

Radiologist says that I can expect to go hard in the gym in aprox 3 weeks. I will give you all an update in a week to let you know how I am feeling

I was 5 years older than you and in very good health going into it. It was a full year before I was back to 80% of what I could accomplish pre Tx. Everyone has different experiences with their response to treatment. Some have even driven themselves to all of their RT treatments and went back to work several weeks, post Tx, but they are certainly the minority. I'm not trying to be a downer here - just tell you that the post Tx phase is very unpredictable. The majority of us continued with radiation reaction issues up to 3 weeks post Tx so I am curious why your doc feels you will be back in the gym in 3 weeks.

I have always felt one has to plan for the worst and hope for the best. Take it one day at a time.

I drove until about the last 2 weeks and finally I admitted that I was not only a danger to myself but to the rest of the drivers. I also had a horrible experience my first 2 weeks post Tx, hospitalized, etc and finally walked out of that tunnel in the 3rd week. I was still weak (mentally and physically) as a kitten for a good 3 to 4 months post Tx but by spring, which was after my tax season, I was mentally ready to take on Lance. With my renewed desire to prove to myself I was not going to let this affect me and with my new lighter frame I quickly rose to my pre Tx riding ability and for a time was a better rider. Each of us can respond differently.

Laz, i too was in pretty good share, knocking down an ironman a year. My treatment devistated me. I was done about 26 montha ago and it took a good 6 months before I could run or ride well, swimming was a bit eaiser. I did lose alot of muscle so it is frustrating comming back. I am weaker than I was before, but still have the desire to work out. You got plenty of advise in the previous posts but here is one more. We all lose some of our salivia during radiation. it takes a while to come back. I bought a camelback still run and ride with it!
It is a loooong road back but just keep moving forward! You will make it back

Steve

Congratulations on being done with radiation! You are doing great! Wow! You've done so well, your doctor is probably right on target with the estimate on when you can return to your usual routine at the gym.

Best wishes as you transition from patient to survivor!

Sandy

Re the Camelback, I also bought one thinking I had to have one to ride. First time using it I found it to be a constant drain on my speed as every 7 seconds I had to put that thing in my mouth. I did find that by using Biotene gum and keeping my mouth closed as much as possible and definitely not engaging in conversation with fellow riders, that I was able to do without it and just drink from my bottles as normal. Brand new only used once Camelback for sale!

Thanks for all the kind words and advice. I finished up my radiation on Monday. Said my goodbyes to all the Techs and Admin folk, gave my favorites bottles of champagne and told them that I hope never to see them again at work. Currently my mouth/throat feels like a combination of the following; just finished eating a hot slice of pizza, a sore throat and biting my own tongue.

I have been grabbing a nap 1-2 times per day (it helps having a three year old at home) as have been feeling a bit rundown.

Food still consist of oatmeal with banana and protein shakes.

I have my trainer tomorrow (for the first time in 3 weeks) so will be interested in how much I can push it.

How long did it take for most of everyones mouth to heal? I am fortunate that I did not have Chemo and that they had the lasted IGRT kit at University of Miami (have not really had much of an issue with dry mouth)

Also I was making it a point to breath through my nose when sleeping with going through radiation. Does it matter if I breath through my nose or mouth when it comes to the mouth healing?

I remember the feeling! What our poor mouths have been through! I think my mouth really started making progress as week 2 moved into 3 and then even better by week 4!

You are doing so well! Congrats on making it through and working so hard on your recovery! Hope things went well with the trainer - regaining physical fitness was a bigger challenge for me that almost anything else. It takes time and patience was hard to find! Be easy on yourself!

Definitely better to breathe through your nose - the mouth can heal better when it's moist - dry mouth creates an unbalanced and abnormal environment!

Keep doing what you're doing Laz!

Laz, you continue to amaze me. Sounds to me that you're at a point right after RT that took me months to reach! Fantastic. I agree with the nose breathing if you can do it. I've always had blockages so it's tough for me.

And do go easy for awhile. That you're able to eat anything solid is wonderful. Again, that took me 4-6 months.

Congrats!

Sorry to take so long to check back in. You were right that the effects of radiation hung around for 3-4 weeks after final rads. Putting the weight back on has been a challenge, though I think that much of it was not drinking any beers.

Taste is back, saliva is about 80% of the original. I have to really thank the team at Sylvester Hospital at the University of Miami in Miami.

Back to playing lacrosse again (started back in April). The mouth gets a bit dry during games, however just need to keep an extra water bottle on the sidelines.

Just has my ~1 year PET this past week then went to London for the Olympics (which was fantastic). Hoping for good news when I meet with my Dr next week (not expecting any bad news as all has gone as planned) Will keep you all abreast.

Hang in there and I hope/trust that all is good and/or getting better in your worlds.

Sounds GREAT. It's all up hill from here except that "getting older" part of life!

Wow, Laz you are doing EXCELLENT!!!! I love hearing from survivors like yourself, it gives so many other hope that they too will get past their struggles.

I bet the London Olympics trip was the trip of a lifetime! I watch it everyday on tv and think of what it must be like to be there in person. Im in awe of the amazing athletes who work so hard for just a few minutes of competing to be named the best in the world. That is true dedication.

You will see small improvements right up thru 2 years post rads. Best wishes with your continued recovery!

So glad you are doing well!

Great job Laz. You must be relieved and smiling.