I have oropharyngeal cancer scc, stage iv, HPV+.. Started in my tonsils and spread to the lymph nodes on the left side of my neck. Just a little lump to start with. Didn't think much of it.

Starting chemo with cisplatin on Tuesday. Radiation starts the same day. Three infusions of cisplatin scheduled over the next six weeks. Radiation each weekday, but I get the weekends off.

I bicycle 50 miles a week and jog 20. I was planning on a triathlon this spring, but life had other plans for me. Really not sure what to expect as my doctor says much will vary by patient. Will I be able to work, run, bike some of the time, all of the time, none of the time? We'll see.

I've started looking through the posts. Lots out there to look through.

John

I ran a half marathon two months before dx. I felt so good two days after chemo #1 that I did a 6 mile training run. That was my last til I got better. I did not have a PEG tube ( my choice) and I had to replace every calorie I burned plus my target every day which was 2500-3000. I have seen some here say to keep working out but i couldn't. I did really well during tx because I was in good shape. As an athlete you know your body so I would say do what the doc blesses and rest when you're tired.

You can do this.

Hello John:

Welcome to the family, though I'm sure it's a family you would rather not be a member of (like the rest of us).

You will hear this over and over on this site, what you are able to do or not is purely individual. A physical therapist I know who has tonsil cancer (no lymph involvement) was able to work all the way through her radiation. She just had to slow down a little, maybe see 1 or 2 less patients per day due to fatigue.

I'm sure she didn't run and bike as you do. Unless your oncologist is also an athlete he likely won't understand your need/desire to continue training. He could easily advocate shutting it down completely during treatment. That's where you will have to be your own advocate and speak up and be persistent about your needs.

So, how about starting off with the "in moderation" approach. In the first week or two of treatment, cut your training by half. Your body will tell you soon enough if the level is right. Your treatment side effects will grow as you get deeper into treatment and then subside post treatment. So, post treatment is when I think I would really be watching it to see when you can re-elevate your training distances. Again, your body will tell you what is appropriate.

You can learn a lot by reading about other forum members cases. You just have to factor in that they aren't athletes.

I don't think I would finalize the spring tri decision at this point unless it's a half Iron Man. If it's a sprint tri maybe it's still doable. It likely won't be a PR for you, but there's no reason you can't envision it as being the most memorable tri you ever completed.

Hang in there, there is a light at the end of the tunnel.

Tony
Houston Tenneco Marathon, 1990, 91, 92. Several halves since then and too many 5k/10k to count. MS-150 (Houston to Austin) 1992 thru 1997.

John,

Read my Signature Line. By Spring I expect to hear great ride stories from you! BTW I'm doing a Century Nov 10.

OK now some advice....

1. Eat everything in sight NOW. Forget FAT, just eat all your favs and I don't care if you eat pizza for breakfast.

2. Get fitted for Fluoride Trays if you haven't already and start using tem every nite.

3. Get a blood draw and record your TSH level pre Tx. Keep that number in a safe place as your Thyroid might get damaged with the rad.

4. Watch out for the Cisplatin and hearing damage. If you hear ANY strange noises coming from your ears like a faint buzzing or "ringing" as some call it tell your MO IMMEDIATELY.

5. All throughout this Tx and at least the 1st year of your recovery consume 2500 - 3000 calories and at least 48 ozs of water EACH and EVERY day. Start today.

6. Use this site 24/7. There are many many things that can and usually do happen to us during this Tx and while it may cause concern it's pretty much NORMAL. You may loose your taste; develop thick mucus; have burns in your throat; get nauseated; loose weight; develop dry mouth; have pain issues, etc. I'm only telling you these things because IF you experience them they are NORMAL. PAIN IN THE ASS, but totally normal so don't be alarmed.

7. Most of us with your presentation and Tx don't usually start to have "problems" until after the 2nd bag of Cis so weeks 4 thru week 3 POST Tx are usually when we hate this Tx. That's only 7 weeks so keep that in mind.

So Gulfcoast is that TX, La, Ms or Fl? Maybe we can ride together some day?

Welcome to OCF! Glad you have found the forum to help get you thru the next few months.

Most patients are able to keep their lifestyle pretty much the same the first 2 weeks of treatments. Whats important right now is intake! Burning off that amount of calories biking and running probably isnt the best idea. Every single day your intake must be a minimum of 2500 calories and 48 oz of water. For someone so active I suggest taking in 3500 calories and 60 oz of water daily. I know it sounds like way too much but your body is fighting the cancer and soon the treatments so it will be burning calories at an incredible rate. This is probably the most important thing I can advise you on and it will make all the difference between struggling or getting thru it easier. You are in for the fight of your life so your focus needs to shift from exercise over to your intake instead.

Read and educate yourself so you can be your own best advocate. Please feel free to ask questions and we will help you thru this.

Something to look forward to: I still have a text from my imaging people responding to my question "If I run a half marathon four days before the PET will it hurt anything?" He's a good friend and his paraphrased response was "I'm not sure. We don't PET many elite level athletes." I'm not elite but his saying that sure made me walk a little taller for a while. This path isn't easy but it's doable. Keep a fighters attitude and you'll be on the other side of this in no time !

Yup... what Chris said... ;o)

Hi John,

More power to you to keep up physical activity levels. Most suffer side effects that will sideline you through rads and some time afterwards.

Besides having the energy to do exercise, particularly of the calorie consuming variety, you have to increase your caloric intake over what the resting body needs.

Many struggle getting sufficient calories to maintain weight much less have the luxury of extra calories to account for the exercising.

If you struggle with weight loss, the strenuous exercise needs to go first; priority is to keep nourished and hydrated.

Thanks all for the responses! A lot of good thoughts.

I have about an hour left on my first chemo. Had my first radiation treatment this morning. A lot of firsts I wish I didn't need, but it's the only way forward.

David, I'm sitting in the infusion center at Moffitt. We'll have to catch up for a ride one of these days. I ride the Pinellas trail to work once a week. My wife and I both have mountain and road bikes. So we do get in a mix of riding.

Sounds like I have two weeks to sort through excercise and eating. Good points on the calories burned/needed.The doctor also recommends "bulking up". A bowl of ice cream before bed each night. We'll see how it goes.

Thanks again for the input, much appreciated!
John

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