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5 weeks out of rads and chemo for NPC

Kyle Gilmore
Posts: 55
Joined: Sep 2011

I find myself close to soon getting enough food thru my mouth...just eggs and similar simple bland foods but its going down regular.Any other NPCs out there that got back a real appetite and taste buds? When is ir reasonable to ask for the tube to be taken out?

I can tell I am healing but get burned out so quick...i am back at work and i am lucky to squeze out a 8 hour day...then after wards i find myself in bed for a whole day.What I find though is that after every down time i am a little stronger for the up time.

I have been having all kinds of aches, pains and headaches and earaches.They are not serious and i think its do to lack of exercise.before i got diagnosed I was working out everyday since i work in a venue that also has a gym...I was 43 and super strong and healthy when i got diagnosed....been about 3 months now with treatment and a month of recovery. should i start working out again? whats a good heart rate and distance goal for cardio.

Hope you can help...going nuts with lying around just trying to get nutriton in me.

A freind I made because of our common dillema with cancer has passed away from his c last night here in Salem Oregon he was 82...clear headed and a pleasure to spend time with.his name was Gil.Send your prayers,good juju and positive thoughts his way.hes on the path we all never took but will soon enough feel under our feet.

Thanks!

Jimbo55's picture
Jimbo55
Posts: 576
Joined: Jun 2010

Hi Kyle

Can't help with the tube question as I didn't have one.

It is so easy to overdo it soon after treatment and it really does knock you on your butt for a day or so, ain't that the truth. I was lucky and was able to ease back into work after treatment. For the first month or so, I would go in to work in the am and then usually go have a bit of a workout in the afternoon.

I tried to keep active during treatment, mostly by taking a 20-30 minute walk each day. By the end of treatment, 15 minutes was a struggle. After treatment I slowly built myself back up, adding a little bit by bit. About 4-6 weeks post treatment, I tried running and could make all of 5 minutes (seemed like 45 minutes!) I then increased by 1 minute each run.

I don't think heart rate and distance should be a primary concern when you are first getting back into it. That 1st 5 minute slow jog had me sweating bullets!
Pushing yourself too hard, especially in the beginning, will definitely have you knackered for the next several days.

I am 16 months post tx and earlier this month I ran in a 10K. It was a great run among the ancient temples of Angkor Wat in Cambodia. These temples date back to the 9th and 10th centuries. A great setting for a run and it was a great day to be alive to run this race once again after surviving the big C.

Cheers!
Jimbo

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

after my several interventions. Well, except for the cambodia thing:)

Kyle Gilmore
Posts: 55
Joined: Sep 2011

That must have been a great time on that 10 k....I have found a trilogy of videos on netflix called journey into buddism that i must have watched over 20 times each while in treatment and recovery. The temples of Cambodia were in them.

Thanks for the pointers....I think I will start on a 20 min treadmill with minimal strength training.

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

5 weeks out of treatment is not very long at all. Sounds like you are doing a whole lot. Give your body time and listen to it. I've heard before to eat before you are really hungry and rest before you are really tired. I know that my husband (the patient) wants nothing more than to have his old appetite and energy but, there is a "new normal" for most folks here. One day at a time...You will see progress, especially if you judge by longer periods of time and not by days. Maybe by weeks?

Best wishes,
Robin

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

If you are only five weeks out and doing all that, then I think you are doing fantastic. I'm not NPC, but I had SCC and 30 rads.

I was told by my doctors and my nutrition team that I had to gain back at least 13 pounds, to get to 100 lbs, and then maintain my weight for at least one month with out using my peg tube at all. So if you are a decent weight now, as your doctors, but if you can maintain a safe weight format least a month without the tube, that is good. I made sure I kept track of my calories daily, to make sure I was getting enough in. I found that if I did not track them, I would not get enough. I looked up how many calories i needed and ate enough calories to reach my goal weight. Drank a lot of smoothies with protein powder, and prepared a lot of eggs with hollandaise sauce, and a lot of puréed vegetable soups with my HealthMaster, which is an emulsifier/high speed blender. Vitamix, and Ninjas are other high speed blenders others have to make it easier to get in good nutrition. It took a long time to get back taste buds and appetite. I'm 2.5 years out and now I'm starving all the time. My taste buds are so much better, but not what they were before radiation treatments. I still have issues and pain with my tongue.

If you need food ideas and tips with nutrition look at the HNC Superthread in the section called:

NUTRITION / HEALTHY EATING / LIQUID NUTRITION TIPS:

HNC  SUPERTHREAD

Can't help with the exercise.

Kyle Gilmore
Posts: 55
Joined: Sep 2011

My rad onc keeps pushing me to push myself. I had 35 rads concurrant with cisplatin.

Onc says to swallow as much with texture as possible even if it hurts she keeps telling me i edont want to lose my swallowing memory

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

That might be another good topic for the HNC Superthread, maybe I will work in that next.

sumarah8
Posts: 32
Joined: Sep 2011

One month after my radiation got my taste for sweet, I just finished my ist cycle of chemo for npc and I'm still doing fine, I can still eat but the real appetite is not there, were the same, we pushed ourselves too much to be normal again, but I guess its still too early to be normal again... I have a little bit of taste of any food, but the sweet is like 95%. You'll see one day you will be surprised you already got your taste back!...

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

Sweet taste came back first for me. Took a very long time for savory foods to come back for me. Everything tasted like wall paper paste with tons of salt. :p

osmotar's picture
osmotar
Posts: 1005
Joined: Jul 2011

I miss eating fruit, right now anything sweet has a nasty taste. Just finished creamed loaded baked potatoe soup with left over ham that I cut into cube...was delicious.

Hal61's picture
Hal61
Posts: 655
Joined: Dec 2009

Hi Kyle, your speed of recovery puts you in the upper 1 percent of the graduating class I think. One month out I wasn't thinking about recovery, only reruns. Great job and effort. Like Sweet, my docs wanted me to maintain weight for one month without using the tube, before thinking of removing it. I could never gain weight on the tube. I went from 165 to 140, and never really started gaining until I could get down the "textured" food you doc was talking about.

best, Hal

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