| Joined: Jul 2016 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2016 Posts: 34 | Hello fellow members, I know it has been a while since I have shared. After being diagnosed with stage 2 throat cancer I think I told all of you that my ENT advised not doing surgery on my throat as it would be a very big life changing experience. Epiglottis removal, voice box removal, stoma and permanent feeding tube, I am pretty happy with the decision to not due this surgery and do radiation instead. 35 radiation treatments later, temporary feeding tube, 30 pounds lighter, treatments were over about 4 weeks ago. I am starting to ween myself off the morphine and hydrocodon and am trying to gain some weight back though very difficult. These radiation treatments were brutal. My nutritionist said to use 6 bottles of Isosource a day to help gain the weight back but I can't do it. It smells foul so I am eating as much as possible and 2 Isosource things a day. I have gained maybe 2 pounds. I went back to the radiologist last Monday for a follow up scope, though he said that my throat was still quite swollen and iritated but that he didn't see any signs of cancer there. He said that he can only see the surface and a soft tissue scan is scheduled for August 8 and another scope afterwards. WOW, some good news for a change. I went to church this morning for the first time in 4 months and wept quietly the whole service. I can't push it, my tolerance for patience and resting is nil but with my wife helping me I will make it! Cheers to you all, Murphy
5/31/16 Partial Glossectomy Right neck dissection 22 teeth extracted Six weeks of radiation Ended 8/19/16 2/8/17 Biopsy of epiglottis-cancerous 35 radiation treatments to the throat, End 11/17/17 8/23/19 Tongue reconstruction, left radical neck dissection
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Congrats on doing so well, Murphy! Recovery takes a very long time. None of us can ever bounce back as quickly as we think we should. Gaining 2 pounds is a step in the right direction. The following list should help you to find things you can still eat easily like canned peaches (these will slide right down) or cream soups (helps with sensitive mouth sores). I also enjoyed yoo-hoo and chocolate milk during rads and recovery plus the extra calories sure didnt hurt. List of Easy to Eat Foods Here is a recipe for something I used to make and drink when I went thru treatments. This shake has anywhere from 1500-2200 calories depending on how its made. The list of easy to eat foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate. If you are ever eating and feel like the spices in your food have set your mouth on fire, milk will instantly neutralize the burning in your mouth. I also found room temperature foods were easier for me to eat or slightly cool. Anything hot bothered my mouth and hurt like heck. (All measurements are estimates) Giant High Calorie Choc-Peanut Butter Milkshake3 or 4 cups chocolate ice cream (regular/full fat type) 2 tablespoons peanut butter (smooth type) 2 tablespoons chocolate syrup 1 or 2 cups whole milk (can substitute half and half to add even more calories) 1 scoop carnation instant breakfast 1 scoop high protein whey powder (check with doc if this is ok) Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you. Hope these tips help. Best wishes with your continued recovery 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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Murphy,
Nice to hear from you. At our hospital, we were told to make fortified milk for milkshakes/smoothies that you are making. Here's the recipe
Protein Fortified Milk Recipe Ingredients:
1 quart whole milk or 2% milk 1 cup powdered non-fat dry milk Blend milk and powdered milk together. Chill in refrigerator for 4-6 hours before consuming. Each one-cup serving of protein fortified milk contains 211 calories and 14 grams of protein.
In addition, you can put ice cream in your Isosource to improve the taste. It will also up the calorie count. That's what I used to do for my husband. Poached eggs are good too, they go down really easily. I kept a detailed calorie count for all the meals as it helped me to keep track of how much John was consuming.
A shout-out to your wife. I know how tough it is to be a caregiver and I applaud her efforts.
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: 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 | Murphy, congratulations on completing your treatments! As said, gaining two pounds, and getting out, is a step in the right direction. Like you, I couldn't do 6 cans of Ensure or Glucerna or at least want too.
Other than what was already said, I found egg drop soup to be nutritious and tolerable, and basically lived on that, along with the supplemental drinks, scrambled eggs, cooked with lots of butter on low heat or other means to avoid any browning, and pastina cooked with chicken broth, lots of butter, and grated cheese, if it's tolerable. Slowly, I added or tasted different foods, sometimes as little as a teaspoon to help get my taste back on track, and it did, but it's not overnight. Even to this day, when I order out, it's not one dish, but may be as many as 5 or even 7 to see what I can eat and taste. Some even go to a buffet, which may be a cheaper way, but I'm selective with that.
Treating and preventing mucoctis and thrush helps too, as do avoiding spicy, acidic, too temperature hot, and sharp textured foods.
To increase appetite, caffeine helps, so does fat and sugar type foods, took marinol for a while also, which increases appetite. There are others as well.
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: Sep 2016 Posts: 111 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2016 Posts: 111 | Murphy!
Great to hear from you. Glad to see that you completed the treatments and are in the process of recovery
Have you tried the unflavored Isosource? (Quick piece of advice - Don't try to smell anything before ingesting but it sounds like you figured that out for yourself.) Head and neck cancers and their treatments really do a number on smell and taste sensations
You could also try any over the counter weight gainer / muscle milk type of liquid. Something high in protein....
Good Luck
1997 SCC Tumor on tongue - Partial Gloss 1997 Met to Lymph Radical Neck Dissection / 2nd Partial Gloss 6 weeks chemo and radiation Brachytherapy 2011 Stroke 2014 Recurrence SCC at Base of Tongue / Hemi-gloss Free Flap reconstr from thigh PEG Tube Radiation Permanent Issues with speech and swallowing 2018 - Bleeding throat / mouth 2019 - Bleeding throat / mouth 2019 - 3rd diag Cancer SCC Base of mouth / jawbone 2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue | | |
Forums23 Topics18,166 Posts196,921 Members13,103 | Most Online458 Jan 16th, 2020 | | | |