| 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 | So glad you like it, James! While I was recovering from rads, I would drink 2 or 3 a day plus eating and doing the peg tube overnight feedings. One day I totaled up my intake and was shocked to see 7000+ calories a few days a week. Even with that gigantic amount of calories, I never gained an ounce until a few years later. 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 2012 Posts: 14 Member | Member Joined: Dec 2012 Posts: 14 | Great suggestion on the choco protein shake. I bought one of those high powered blenders (OC folks can get discounts, check the websites), and wanted hubby to start with the GREEN shakes (full of Kale, etc..) but found that the chocolate/banana shakes were a great starter. I still make them once in a while, cuz now after several months and 'experiments' he can down a green shake! I've added fresh ginger for nausea, raisins or dried plums for iron (like the kale &/or spinach isn't enough). See my other posts for other nummie ingredients!
Joanna - caregiver (spouse) Init bio 11/12, gloss/neck dis 12/12, rad/cisplatin - 6 wks 2/13
"The most important thing is to keep the most important thing, the most important thing."
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | LOVE a power shake... seriously starts my day every day... YUM! hopefully things continue to progress well. hugs
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: May 2013 Posts: 42 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2013 Posts: 42 | Sending hugs. It is not an easy place to be in as caregiver with the nutrition. I too was at wits end with my husband, but his probs came much later. We finally had a fdg tube inserted the last week of his treatment after loosing over 50 pounds! In the beginning , I would have him come grocery shopping with me to pick out things he believed he would tolerate.he was making up his own smoothies for awhile adding various things, peanut butter or various fruit. Allow him variety and lots of choices. There is a good listing on this site for soft foods which is helpful too,and a good pantry filler...as far as nausea, talk to MD and tell him nausea not well managed. If one drug doesn't work, another will. Rx Zofran was a life saver, great drug for nausea. It's been a couple weeks since your post , how are you Both doing? Stay on site, great place for support!
Colleen Wife/advocate for husband. 52 yo nonsmoker ISSC tonsil stage IVa. HPV + Enlarged node & tonsil, CT 2/13 Bx lt tonsil 3/8, PET 3/16 Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk Tx end 5/29 GT 5/24-7/17 Officially in Recovery Phase! : ) CT scan 8/13-NED ! CT scan 7/14-NED 5/2018- 5 year anniversary -NED
| | | | Joined: Sep 2013 Posts: 9 Member | OP Member Joined: Sep 2013 Posts: 9 | Thanks for the hugs! He still is having a great deal of trouble eating (by that I mean drinking nutritional drinks). His gag reflex is going crazy and thick mucus grosses him out constantly. He's lost 30 pounds since the start of this. However, today is his last day of rads. We know he won't improve right away, but at least there's a light at the end of the tunnel. I am pleased with his willingness to keep trying new things, even though we have had little success. On a good day of experimenting, he'll actually take in a few more calories than on days when he just tries to gag down some Boost, even if most of the experiments end up down the sink.
Wife/Caregiver 6/5 ENT visit 6/11 FNA biopsy on lymph node 6/13 DX T2N2b stage 4 SCC on right tonsil metastasis to lymph nodes on right side 7/8 first chemo using Cetuximab 8/20 radiation oncologist initial visit 8/21 dental clearance Cisplatin and Radiation starting Sept 9 2nd Cisplatin Oct 1 Radiation completed 10/24 | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 188 Likes: 4 | You are absolutely right with the word experiment. My cupboard is full of mine. We made hydration number one high calorie high protein shake number two and then whatever appealed to me. Fortunately I had a PEG to maintain base nutrition. The experimentation will continue for awhile so be patient.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV great team at OSU Tx 6 weeks of rad started June 3 8 weeks of chemo started May 28 RTOG Phase III trial Cetuximab group. Treatment completed 7/16/2013 PET Scan completed 10/08/13 Results discussed 10/11/13 NED - Free but am I Next part of the journey? 1year PET 10/24/14 NED Good reports now 10 years out. | | | | 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 | Congrats on finally getting thru the rad treatments. Its not easy at all and the road to recovery will be a very long and sometimes frustrating time. The most helpful thing you can do is continue to push the high calories and hydration with attempting to maintain the 2500 calories and 48 oz of water every single day for at least the next year. His body has been thru the war and needs lots of fuel to rebuild itself. High protein whey powder (unflavored) is an excellent additive to drinks. It dissolves easily and doesnt alter the taste. Add it to a shake or smoothie. Make sure to check with your husbands doc first as from what Paul mentioned a while back his protein can impact the kidney function in some way. Here is the list of easy to easy foods. Try to make a goal of having your husband try say 2 or 3 new foods a week. Be prepared for the first 3 or 4 weeks for everything to taste like burnt, salty cardboard charcoal. Gradually that will change and one day out of the blue your husband will be able to taste something and that will be his new favorite food. Hang in there, this horrible ordeal is almost over. You did good! Easy to Eat Foods List 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: 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 | That's a great milestone to finish the rads BUT dig down deep now. The next few weeks can be VERY MUCH WORSE that anything you guys have experienced up to this point so just be prepared. Seriously if he doesn't have a PEG please consider getting the nasal tube because the way it sounds he will definitely need one or the other at least for 2 to 3 weeks.
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: 225 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jan 2009 Posts: 225 | Hi, I agree with David, the next few weeks will be tough too. Radiation carries on working. I found the nasal tube was an enormous help and wish Martin had not resisted so long. I could make sure he had the correct amount of nutrition. He just needed to keep drinking. We were also given a nebuluser to help with the dryness and mucus. I also sneaked it maple syrup in everything in an attempt to hide the taste. Our dietician said to us the best way to keep his weight up was dairy, so ice cream, yogurt, creme caramel were present at every meal. Good luck and well done for getting through the treatment.
Girlfriend to Martin 49 years old at diagnosis Diagnosed with SCC unknown primary June 2008. Cancer found in single node Stage N2A (3 to 6cm). Tonsilectomy 16th june, Radical modified neck dissection left side 30th june. 30 TX radiotherapy ended 9th October First comparative study scan came back clear
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Its a long slow road to recovery from here. What he's going through is completely normal. It will be frustrating for you, you will probably feel like its your fault but its not. I don't know what weight he was to start with, but its a very common misconception "I can afford to lose a few pounds" and pick it up later. It doesn't work that way.
It is a real struggle mentally when you feel full and everything tastes bad and it hurts to swallow, you have no saliva and gag at everything. But you have to find a way.
Experiment with everything. All calories are good calories right now. Experiment with meal timings. Smaller more frequent snacks. Have a food diary, thats important when experimenting, its easy to lose track and end up eating much less than you thought.
Doing the groceries with you can be a blessing or a curse. It can be really depressing to see the range of food and feel you can't eat any of it. I had a few cries in supermarket aisles. On the other hand visual stimulation can give him ideas for new experiments. Try not to nag him, listen to him and work with him to do what he needs to do. Best of luck and keep up the good work, you've done great to get here. 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.
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