Haven't seen anything relating to exercising while undergoing radiation. John wants to keep that up as long as possible (just had his first rad treatment today), but the RO said something about not wanting him to exercise during radiation--something to do w/weakened blood vessels. He's only had a couple of very brief visits w/the RO so far, so there's minimal information.
Thanks for any input...the cancer seems more real now w/this first treatment, even more so than after his surgery over a month ago.

We have all been told that mild forms of exercise is OK, like walking. I was told to forget my bike and believe me I wouldn't have dared get on my bike as I was weak, nauseated and clumsy just to mention a very few symptoms.

Look, exercise consumes calories and most of us lost 30, 40, 50 pounds or more. I lost 30% of my total body weight and I was at my ideal weight when I started rad.

Here is something I posted a few months post Tx about my Tx experience:

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the Ciplatin and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck fared a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

I hope this helps you understand that this Tx is one of the most barbaric and brutal cancer Tx's out there.

Unless John is an ultra athlete doing iron man triathons, a break from major exercise will have no real impact on getting back in shape once it is over. Like David, I was uber fit when I started; weightlifting heavily, half hour elliptical sprints, hour classes of advanced pilates and yoga, not to mention doing honey do projects around the house like driving out to the quarry and loading up a hundred bags of 50lb landscape rocks, then carrying them around the back yard and spreading all 5,000 pounds. I was inspired by the Lance Armstrong books and I had a major exercise plan for my TX all planned out, Well, the radiation and chemo TRASHED me big time and it was a chore to get to the couch. Opening the cans of ensure was my major exercise, Yet in three months after treatment over I was back at the gym, lugging suitcases onto the airplane for a hiking trip out in Scottsdale, AZ, and enjoying it all the more for having lost it,
This time around, just doing mild pilates and physical therapy exercises. My point is that John just needs to listen to his body and if he has no energy and lots of fatigue, just relax, It can and does come back, faster than you think,
Charm

I would recommend mild exercise like walking as long as you are able to do it. Although I only lost 4-5 lbs, I lost of lot of leg muscle because after week two, I spent about 16 hours a day sleeping, not because I needed it, because it made the time go faster. If you are up to it, I would keep moving.

Take care,
Eileen

Muscle is the 1st thing you lose. too bad it isn't the belly fat LOL\

EzJim: ha ha!