| | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 92 | Just wanted to pop on here and share some good news instead of asking advice for bad sad effects. I am eating a 1/3 pound hamburger!! I took the top off and its going very slow with a little burn from the salt but over half of it is gone and it taste delicious. I am even able to swallow some bites without having to wash it down with water. I am also enjoying a Dr. Pepper with it. Its a good day, doesn't mean to tomorrow will be. I have discovered with me that just because I can eat fairly good today doesn't mean I will be able to tomorrow. I might be back to Boost VHC tomorrow, its back and forth. But I am enjoying this moment.
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 8 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 8 | Good for you Rosy, savor every positive moment. Then you can look forward to more even if there is a temporary setback.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Feb 2013 Posts: 78 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2013 Posts: 78 | That's great to hear! Keep trying different things. I sometimes surprised myself with what I was able to eat!
Andrew
age 25
early 10/12 - enlarged lymph node area
01/13 SCC of L tonsil, L BOT, 2 L lymph nodes
stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT
4/13 TX finished
7/13 PET/CT - NED!
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | keep eating! good for you. don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Isn't it great how enjoyable eating a hamburger can be?!! You really have to savor and enjoy the good days/times. And don't think too much the "what-ifs" of the not-so-good days . . . they might not even come! But if it happens you can start thinking about how good that hamburger was and know that it could happen again! Good for you, Rosy!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jul 2013 Posts: 33 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2013 Posts: 33 | I am a little over a month behind you and your post offers me some hope. Still getting everything through the tube and waiting for that breakthrough moment.
Thanks for sharing.
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin).
Tx completed 7/2013
MND 10/2013 (Pathology Negative)
Debridement for minor ORN 7/2014
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 |
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Wow! Meat?! Good for you! I still have a little trouble with meats...chicken and beef are a little to fibrous for me still. I can eat them but it requires a lot of water. Still no saliva production at 11 weeks out.... but I did get to enjoy a BLT the other day. Between the mayo and the tomato I was able to swallow quite a few bites without water  Glad to hear this! "T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | 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 | [quote=rosymonroe] ... I am also enjoying a Dr. Pepper with it. [/quote]
LOL...I lived on Dr. Pepper for quite a while. Up to 11 cans a day with nothing else for weeks. The fizz broke through the goo and it was refreshing. I mostly drank the Dublin Dr. Pepper with cane sugar. I stopped after my blood sugar hit 300 and graduated to Ragu sauce and spaghetti for months. I never knew a noodle could shoot out of the nose intact when you sneeze.
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
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Every bite helps. I eat my hamburger rare, had one last Ning, as a well as other fatty cut meat, med rare, if that. If cooked too much, it's difficult to swallow, unless stew type meats, chuck, flank, oxtails, short ribs cooked for several hours. I still need plenty of water, but can eat most anything not over cooked, except vegetables, I don't like them raw or aldente, but cooked through so its easier for me to chew, swallow. Fat in oil, butter helps with taste and swallowing. Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
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