| Joined: Feb 2013 Posts: 13 Member | OP Member Joined: Feb 2013 Posts: 13 | I'm new here. My husband, Phil, is the patient and I am having "culinary adventures" every night trying to find what he can tolerate. He had a tumor removed from his tongue in May 2012 with clear margins and no cancer in lymph nodes. In November a new one showed up. Due to insurance issues he didn't start treatment until late January. He's getting Erbitux infusions plus daily radiation. I've read a bit here and so appreciate the input! I apologize if my questions are repeats. Salty, acidic and of course spicy foods are off limits plus anything dry or bumpy. Oddly, he can tolerate things with cheese and salted butter, but nothing if we add a bit of salt ourselves. I am wondering if potassium salt substitute has the same stinging effect as salt. Every fruit he has tried burns. I have not tried stewing prunes yet, so maybe that will work. It can't hurt with gastric issues, either!  Thank you! Lori
Lori, wife of Phil, 54 Phil's data: SCC dx spring 2012 right side of tongue, stage 1 Tumor removed from tongue and lymph nodes in neck 5/12 ALL margins clean, ALL lymph nodes clean SCC near 1st tumor stage 1 dx 11/12 Erbitux infusions and rad began 1/28/13 No known cause of cancer
| | | | 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 | Welcome to OCF, Lori! While being treated and recovering from oral cancer a patient will have major issues with eating. Im not surprised that salt will bother him so much. Every single food and drink will not taste like it is supposed to for weeks, possibly months. All the food problems are usually a temporary hardship and most members will slowly return to eating somewhat close if not exactly like they did prior to having cancer. But it takes time, and when waiting for something like recovery, time can seem to take forever. Here is a list of foods which will be easier for your husband to tolerate right now. Easy to Eat Foods Best wishes!! 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: 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 | It is an adventure, and will be for quite a while depending at what point of treatment he is at, areas radiated, and dosage amount, but taste will eventually come back, maybe not quite what it was, but can be close. I'm not familiar with the potassium salt substitute, but have used organic salt substitutes, but not during treatment due to offending tastes of many foods, and not wanting to be turned off by any in the future, I avoided many, and relied on canned nutrition. Anyway, trying to improve saliva may help taste, drinking milk replicates saliva, and may help with eating irritating foods, but the lactic acid may burn in some. Umami, 5th taste sense, is unique, and transcends into all areas of the mouth, tongue....taste buds, which are more compartmentalized in taste senses for salt, sweet, sour, bitter, and helps with taste, so I use Umami type foods often...anchovy, Worcestershire sauce, hard cheeses, dry bonito flakes, fish sauce, dried mushrooms, soy sauce, cured meats, etc., which enhances everything.
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
| | | | Joined: Feb 2013 Posts: 13 Member | OP Member Joined: Feb 2013 Posts: 13 | Thank you both for your answers! I went ahead & picked up a container of the salt substitute. It was inexpensive, so if he can't tolerate it, it wasn't a waste of money. We've JUST paid off his hospital bill and lab bills from last year. We are still paying for the MRI & PET scans. Now the fun part begins with bills for the "chemo" ( Erbitux) and radiation. So very thankful we have insurance. At least this way we can eventually pay the bills. 
Lori, wife of Phil, 54 Phil's data: SCC dx spring 2012 right side of tongue, stage 1 Tumor removed from tongue and lymph nodes in neck 5/12 ALL margins clean, ALL lymph nodes clean SCC near 1st tumor stage 1 dx 11/12 Erbitux infusions and rad began 1/28/13 No known cause of cancer
| | |
Forums23 Topics18,252 Posts197,147 Members13,335 | Most Online1,788 Jan 23rd, 2025 | | | |