| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) |  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Bananas were tolerable early post Tx for me but any citrus fruit was off limits for a while.
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Great to hear from you Nate!
Good luck with the "Cold" stuff. I had the same pitfalls David eludes to, no citrus, acidic foods, and no cold stuff. I still order my water without ice when we go out. I have improved tolerance to cold but find room temperature easier. Right out of treatment I just couldn't handle it. Sounds as though you are doing AWESOME! Keep it up...
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Well I called the GI lab today and they ran me through some procedures of how to unclog the tube. I just got impatient with it and used the syringe the natural way instead of letting it gravity pull into my stomache. Needless to say I injected my carnations this morning, I just could not bare the taste of those things. I almost threw up several times trying to drink them and only managed about 1800 calories so I went to bed angry and determined. So I just injected them this morning, and enjoyed a nice cold Dr. Pepper by mouth instead. I would rather inject the ensures and carnations the rest of the way until I can eat by mouth. I can do milkshakes fine, but am wondering when I should take the next step towards soft food. Also I dont feel quite out of the tunnel yet because I am still bothered by heat flashes that make me so damn uncomfortable and just the pure fact of not chewing and swallowing yet. Thanks for your support and advice, and David, what does it feel like and how will I really notice when I am out of the tunnel. Because truthfully I still feel like I am in the tunnel but can see a small light now.
Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Nate,
I likened it to waking up the morning when you just feel like the cold you've had for 2 weeks is finally going away. I didn't feel that much better but I just felt like something was different. Even then you will have good days and bad days but eventually the bad days will finally give ways to just the good days at least that was my experience.
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Nate. Healing from all this takes a long........time. Everyone is different but John didn't start eating "soft foods" by mouth until around 6 - 8 weeks out of treatments. He couldn't drink those liquid foods, they made him throw-up. He did drink liquids such as water and juice by mouth every day but his mouth was to beat up with mouth sores and tongue sores to eat "real" food.
John never had a "coming out of the tunnel" feeling. He just started having more good days then bad days. John's recovery was long and he didn't have daily changes or was more weekly changes.
Be patient with yourself, you have been through so much.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | How was the Dr Pepper by the way Nate? Did it taste the same to you and not let you down like you thought it would? Well...for Ron he was always on the go. He may have been in pain and hurting but he was always doing something to keep himself busy so I only knew he was getting better by the less time he was in bed sleeping, even though to this day he usually does take a nap daily. BUT now I found out that he is able to swallow better now cuz the swelling he said has gone down and for the past 2 days he has been eating Chili and crackers WITHOUT blending it!! He just chops up the beans and meat a bit and his last day of Rad was 8/16/10 BUT he has Thrush real bad but he wants his damn chili so bad he is tolerating the pain from the thrush AND today he is going to the docs to get that shit taken care of finally and once he is done with that he said he wants to eat so much til he throws up! lol ewww. Day by day Nate.
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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