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#102770 09-01-2009 01:57 PM
Joined: May 2009
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Ok so its been 2 weeks since my last day of treatment! I made that turn (or as Davidcpa says walked out of the tunnel) about 5 days ago and am not going to look back! I am slowly starting to feel better everyday! I had my follow ups today with my RO and my ENT, they both were very impressed and of course said that my age is def a huge factor in that I have progressed so well so fast. However my ENT said I have a very bad case of mucusitis in my throat and that is what is keeping me from still being able to eat anything other than soup or cream of wheat. It still hurts to even drink water but like everything it is a healing process that takes time and it will get better. Other than that I am doing very well, I am going to start working on getting my strength and endurance back tomorrow. I just have to make sure that I get enough nutrients and fluids back in my body. The one thing I have noticed is how much I sweat now and how hot I get. As soon as I walk outside I start to sweat, they seem to think it is the percocet doing that to me. I weighed in at 177 lbs so I lost a total of 23 lbs from day 1! I am actually very happy with my weight, I just now need to start getting fit again. I am finally starting to be able to sleep without waking up every 20 mins gagging on thick mucous! I wake up about every 3-4 hrs now like clockwork! I dont even have to look at the clock because I already know what time it is...As soon as my percocet wears off I wake up! I am still having to pop 1 of those bad boys every 4 hrs or I get really really sore and extremely difficult to deal with...lol my wife always knows when its time for my pain meds! I am hoping to go back to work full time Oct. 1st, I was thinking about going back mid sept part time but I think I will hold off just to make sure that I dont over do it! The lump that appeared on the right side of my neck towards the end of treatment is still there but seems to have started to get smaller so they liked that and still do not seem to worried about it. My ENT noted it today as a sub-centimeter node in sec. 2! Whatever...he wants to see me back in 1 month and do some scans in 2-3! My RO wants me back in 3 months! Ok that is enough of my BS! Hope all is well with everyone and I will continue to post and comment thru this journey! Oh and like I promised I made a donation today and became a member! Thank you to everyone that has helped me thru this!


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
JIM BEERS #102772 09-01-2009 02:10 PM
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Age or not it wasn't until my 3rd week post Tx that I was finally able to start eating again. I remember I called my wife that afternoon and told her I had to have KFC mashed potatoes with gravy and their mac n cheese. She brought that home and I took a few bites of each and found it was going to take forever to finish even if I could so then I asked her to go get me some canned fruit cocktail which she did and I ate some of that. That was my start and I felt liberated.


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.
davidcpa #102774 09-01-2009 02:22 PM
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Jim Beers said:

I was thinking about going back mid sept part time but I think I will hold off just to make sure that I dont over do it....

Has someone kidnapped the real Jim Beers? Now Mr "I don't want to overdo it" is being sensible?

Jim also said:

The one thing I have noticed is how much I sweat now and how hot I get. As soon as I walk outside I start to sweat, they seem to think it is the percocet doing that to me. ....

It's a little to soon but you may want to have your thyroid tested. Next time they do blood work look at the TSH levels. It's common for our thyroids to get cooked during rad but it usually doesn't show up for months post Tx.


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.
davidcpa #102811 09-02-2009 05:16 AM
Joined: May 2009
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lol a lot has changed since then! A LOT!!!!!!! I will ask on my next visit. I asked about them checking monitoring my blood and they said with my age and health there was no need for that. If I was complaining, ran a high fever, lost a ton of weight or looked bad then they would have but since I so called "breezed" thru it they said there was no need to. I had about 10 bites of cheerios lastnight before bed! I was sooooo happy! lol amazing I feel like I am a little kid doing things for the 1st time again and getting so excited over the dumbiest, littleist things! Its good though! I even somewhat tasted them which made me even happier! Wow my grammer was like a little kid there too! Ha have a good day all!


30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
JIM BEERS #102817 09-02-2009 08:39 AM
Joined: Jul 2008
Posts: 507
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Jim,
It is really great to see how well you have done and are doing considering you have no PEG.

I enjoy reading your positive posts.

I also did well, but for several months eating was my big post TX problem, so you are really doing great.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

JIM BEERS #102847 09-02-2009 09:17 PM
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Posts: 51
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Congrats on your progress! Dana has discovered that lobster is very easy to eat...could it be all that butter making it nice and slippery? Also, he saw a pain management specialist who put him on a long acting pain reliever that enables him to sleep through the night. Maybe that is something you might consider so you can get enough rest. Hope you continue to do so well!

Diane


Caregiver for Husband, Dana, age 52
DX 11/08, SCC right tonsil, Stage 3
RND, right tonsilectomy, Peg tube installed 12/08
Cisplatin X3, IMRT X35, last TX 3/09
CT scan 5/09 clear
PEG removed 8/27/09
1st PET scan clear 9/10/09
Minor surgery to repair PEG site 9/17/09


Dianeox #103100 09-07-2009 03:17 PM
Joined: May 2009
Posts: 1,412
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Glad to hear you are doing so well after treatment. Keep us posted.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
JIM BEERS #103114 09-07-2009 07:12 PM
Joined: Jan 2009
Posts: 253
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Jim
Congratulatins on your fast recovery. I'm so surprised you're able to eat so soon. I'm a breezer too, but I didn't recover as quickly as you. Best of Luck!!!

Are you gargling with salt water for the mucousitis? I did it frequently and it really helped to get rid of it.

Sandyst


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter

SandySt. #103491 09-14-2009 06:43 PM
Joined: Sep 2009
Posts: 229
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It's very uplifting to read your posts. Sounds like you're doing wonderful!

The Percocet had me drenched in sweat too. It took me a while to figure it out though.


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old

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