| Joined: Jun 2013 Posts: 49 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2013 Posts: 49 | Hey folks, been a while since we last checked in. Richard is a year out, and most things still taste like cardboard, but he mans up and eats because he is hungry, not for taste. He says he remembers that it used to taste good. Yesterday, he actually had 2 sweet rolls stuffed with coconut and I asked him if he could taste the sweet, he said he could taste a little sweet - so there is his progress. Having minimal taste, has not stopped him from eating when he is hungry. Aloha, Barbara
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Great news, an indication that his recovery is on-track. which is more good news!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Apr 2013 Posts: 14 Member | Member Joined: Apr 2013 Posts: 14 | i had BOT resection/neck dissection 30 rads and no chemo -rads ended august 7 2013 so i am 10 months out---my taste returned slowly after the first month and is nearly all the way back---acidic foods such as ketchup still sting but i can taste it--carbonation bothers me too so i now drink nitro filled stouts almost exclusively--i was a big IPA drinker and while i can taste it, the carbonation irritates my throat--everyone is obviously different but your taste should come back--my goal is never to drink an ensure or boost shake again
T - 55 yrs old BOT - right lymph node T1N2AM0, Stage 4, SCC HPV+ Diagnosed: 4/23/13 Surgery 5/10/13, ND, BOT lesion removed Pathology report: 23 nodes taken, no cancer; clear margins; no extracap Treatment recomm: Radiation only - 30 sessions, lower dose of 60gy to start in approx a week.
| | | | 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 | Sounds good, Barbara! I thought the attitude lunch was his and I was amazed at what Richard was eating then realized it was CJ. What a dork I am!
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Yep, getting sick of the old baby formula. I'm nearly three weeks out and some taste is returning. Going to try pumpkin soup soon:) However I keep channeling Christine B and drink the milkshakes as well. I've lost more weight since treatment than I did during it. Because I lost some weight before surgery, some after and a little during rads I've changed from a rounded, stocky shape to a taller slimmer profile. Very nice but then I think of what everyone is telling me and force down the shakes.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Alpaca we'll worry about the body shaping later. lol Tried a can of tinned spaghetti today. The sauce stung a little but it was soft and frankly anything is a break from those damned Resource thickshakes. Another tip I found works, try a hot drink with the thickshake. Hot chocolate, tea, coffee, whatever. Sip of the shake, sip of the hot drink. Mixes it up a little and doesn't feel like you're swallowing 227ml of phlegm all in one go. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Good point. I tried a beef and tomato cup of soup today - no useful calories but for a taste test and I fancied it. Tasted too strong ans salty but not foul. There's NO sense of enjoyment in anything though although some taste is very reminiscent of normal. Maybe I enjoy the first few mouthfuls of coffee ...
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Dairy helps neutralize the acidity of tomato based foods. Have a glass of white or chocolate milk handy when trying foods that could be acidic. Beware of Chinese food too, for me it burned worse than any other food. Eventually I was able to eat won-ton soup. Its basically just broth so hardly any calories in there but its great for keeping you hydrated. You probably have seen this already, but it may help others who read this thread. List of Easy to East Foods. PS... Please push yourself to take more in. Losing weight now means you are not taking in enough to heal properly. I know Im the biggest nag about intake and I probably always will be! Im speaking from experience, I struggled and found out the hard way by being hospitalized a couple times for malnutrition and dehydration. I felt so bad I actually thought I was dying and thats what it felt like. Even if you spent your entire life overweight, it could be years before you have properly recovered and rebuilt your body enough to gain weight. Im now almost 7 years post rads and Im still slim after dropping 65 pounds. Its a real struggle to take in enough to maintain myself. When in doubt, take a 3 more bites or sips and then repeat ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | 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 | Your body will be producing a lot of mucus and milk can exacerbate the thickness. Follow it with water and guafenesin if it gets too thick and causes gagging.
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: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | As far as milk, it burns some, it did to me, from the lactic acid, sugar. As far as producing more mucus, it really doesn't. Milk has enzymes that replicate saliva, lasts longer than water does, and coats the mouth, which may cause a feeling of thickening of mucus. Speaking of Chinese food, I ate mostly egg drop soup during my last two cancer treatments, which soothed my throat, lessened my mucus, has protein, little carbs for my diabetes, in addition to my canned Glucerna. I guess everyone finds out what works for them, and wasted many foods in search.
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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