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Joined: Sep 2006
Posts: 149
trt Offline OP
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Posts: 149
About a month after Tomotherapy, I was much better, started eating more, had more energy, could drive etc.
Then toward the end of 2nd month about 10 days ago, I started getting all the old symptoms: nausea, diziness, constipation, gagging, more pain, strong headaches, trouble eating, poor appetite, weakness, etc.

Is this typical or did something go wrong.

RO said she was not worried and does not see anything, meanwhile I am a mess.


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
Joined: Sep 2006
Posts: 8,311
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trt,

I can't respond to your specific symptoms but when I was recovering I would have good days and then have bad days and as time went on the good days outnumbered the bad days until the bad days disappeared altogether. The bad days felt like I was right back in the middle of Tx if that helps any.

If your RO isn't concerned than maybe it's just your body doing the healing thing. One thing to keep up with is the calories and water. Now is just as important as during Tx, perhaps even more so. I drank 6 cans of VHC (3360 cals) a day and tried to eat some solid food as well. VHC is packed with protien which I believe aided my healing.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I had a rough time during my 2nd month post tx. I think mine was withdrawals from the pain meds. My doc's told me to expect to feel good then feel bad and eventually I would just start to feel good.


Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
Joined: Sep 2006
Posts: 149
trt Offline OP
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Joined: Sep 2006
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What's worrying me is that they are not good and bad days, they are almost like a good 3 weeks then a bad 2 weeks (and getting worse). Definitely having trouble with nutrition and liquids.


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
Joined: Sep 2006
Posts: 8,311
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trt,

His "poor appetite" may be the blame for a lot of his troubles. Most he has can be a result of dehydration. Kinda like the chicken and the egg. Is he not eating and drinking because he feels bad or does he feel bad because he's not eating and drinking enough.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Sep 2006
Posts: 149
trt Offline OP
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Joined: Sep 2006
Posts: 149
yes, I think it's because I am having trouble eating enough. I can't seem to solve the pain/narcotic/constipation/nausea/appetite problem.


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Joined: Sep 2006
Posts: 8,311
trt,

What worked for me when all else had not was that I just stopped taking all meds and fought thru the pain and the nausea went away and that was my biggest hurdle to overcome. Once the nausea was gone, I was able to drink more and eveything fell back into place.

I am now a firm believer that if you drink your daily water and food you will fare much better all around during and post Tx than you will if you don't keep up. Easier said than done but it's something I wish we could all do.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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