#54659 04-10-2004 09:27 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Lynn, I have thinking about you and wondering if you had gotten the biopsy results yets. Still praying hard for you! Why are they making you wait? Did the results just not come in? My mom is 5 weeks post radiation and chemo and very frustrated with her energy level also. It is also a major concern for her because she thinks that since she is so tired that something is wrong. She too cannot put any weight back on and is trying to eat as much as she possibly can but no weight gain. I keep telling her it takes time but she gets pretty depressed because she really can't talk that great (2/3 of her tongue removed and a large portion of the right side of her mouth) and prefers not to talk much because of the pain (she got off of the pain patch last week). This is all so frustrating. I'm sure things will start looking up for both of you soon. Danielle 
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#54660 04-11-2004 07:49 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Danielle,
I realize every person heals at a different rate but I lost 70 pounds and it took me from August until March to gain any back. I ate a tremendous amount of food and nothing put on the pounds until March. I ate extra fat, 4 cheese lasagna with hamburger and italian sausage, ribeye steaks, Boost Plus with extra fat and Boost Hi Protein. I counted as high as 4000 calories many days with no weight gain. It will come.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#54661 04-11-2004 02:45 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Ed, That is the Atkins diet! 
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#54662 04-13-2004 01:16 PM | Joined: Dec 2003 Posts: 1 Member | | Member
Joined: Dec 2003 Posts: 1 | Danielle, Ed,
Me too! I lost 55 lbs. Was dumping Boost Plus in the PEG like crazy - 2500 Calories/day. Now the PEG is out, I'm eating 90% normally but still can't gain a pound. I'm exercising again, good apppetite, good energy level but can't put on an ounce! It will come.
Bob V
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SCC Base of Tongue & Lymph Nodes (Stage IV - T2N2cM0)
Dx: Sept. 03 - Finished Tx: 3 Dec 03 (Cisplatin 2X, Radiation 20@1/day + 20@2/day
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#54663 04-13-2004 02:04 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | I've just accepted the fact that I'm going to be staying slim and trim for a while. Back to my high school weight. Now, if I only had my old clothes from high school I'd be a fasion hit. Well, maybe not...come to think of it, I still dress the same, just Calvin Klein instead of Levi's.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#54664 04-13-2004 03:49 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Bob,
I was diagnosed 7/21/03 and finished treatment 10/8. I just put on pounds the week of 03/10/04. I am excercising with weights and riding the bike as much as 7 miles every other day, eat like a pig several times a day and finally have my energy back the past couple of weeks. It does come back. My medical oncologist's nurse kept telling me when you turn the corner, you will know it for sure.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#54665 04-13-2004 08:14 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | When I was all done with treatment and feeling like a million bucks, I ate like there was no tomorow and didn't gain an ounce. This happy circumstance lasted for nearly a year, when suddenly my revved up metabolism slowed and I had to cut my consumption drastically. There was some agreement among the professionals that the chemo had changed my metabolism, temporarily as it turned out. Perhaps this is what has happened to some of you also. Enjoy it while it lasts (grin). | | |
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