| Joined: Jul 2013 Posts: 24 Member | OP Member Joined: Jul 2013 Posts: 24 | I'm about 9 1/2 months out from radiation and chemo and still having problems with eating. I have a PEG tube and still use it for most of my calories. I have no teeth and not able to open my mouth very wide. I am trying to work really hard to get rid of the tube. Would love some suggestions to help with that.
Lots of people have told me to try creamed potatoes but for some reason I have real trouble with them. I normally love potatoes but they just seem to stick together and won't go down well, even with lots of water. I was told it was because of the starch. Any suggestions to help them go down??
I have gotten to where I can eat soft vegetables such as carrots, green beans, cooked onion, and baked squash. Have started experimenting with casseroles with those ingredients and have done fairly well. I know I need more protein but haven't been able to do meats much yet. Any advise on starting to use some meats? Ways to cook them or something that can help with breaking it down more?
I do some shakes, bought and homemade and do well with them. I know that they are just mostly calories and not very nutritional but I also know I need that as well.
They say I may be able to be fitted with a bottom denture at some time in the future but probably not the top since that is where the most of my cancer was. Thank you so much for any advice/suggestions that you can make.
Sandra 5/15/12 Diagnosed with SSC 6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51 8/20/12 PET scan showed cancer had reoccurred 9/4/12 Began Chemo and Radiation 1X cisplatin 2X carboplatin 35 radiation 5/28/13 Latest scans---Cancer free 12/2013 Still Cancer Free MO wants no more CT scans (not sure how I feel about that)
Blessed and Very Much So
| | | | 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 | This may help you with relearning to eat. The texture of food plays a big part in relearning to eat. Plus of course things arent tasting right all the time which makes it even harder. Recovery is a strange time full of ups and downs and setbacks but you need to keep trying different things. The trismus can make eating more difficult too. Having no teeth makes it much more difficult trying to chew foods so its able to be swallowed. Some people have gums that will harden making it a little easier, but its not the same as eating with your own teeth. In time your gums might toughen up so it will be a little easier. You didnt mention if you had dentures or if they were a possibility. Here is a list of foods that are easier to eat. I hope this helps. Easy to Eat Food 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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Shakes can be very nutritious pick up a high protein powder and add the ingredients of your choice. - fruit maybe some veggies almond milk etc... I start my day off with one always
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: Jul 2013 Posts: 24 Member | OP Member Joined: Jul 2013 Posts: 24 | Thanks ladies.
Christine, I was told that I should be able to have bottom dentures in the future. One doctor told me I would never have top but another said there was a possibility if they put in a "post" where the most of the surgery was done for them to hold on to. My husband is worried about that. He doesn't want to bother the area and possibly stir things up again.
Cheryld, What kind of protein powder do you use? Does it have a taste to it? My husband had gastric bypass surgery 10 years ago and tried some of those then and couldn't stand it. I would imagine there is a lot of difference from then to now.
Again, thank you and I would be most appreciative for any more suggestions you have!
Sandra 5/15/12 Diagnosed with SSC 6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51 8/20/12 PET scan showed cancer had reoccurred 9/4/12 Began Chemo and Radiation 1X cisplatin 2X carboplatin 35 radiation 5/28/13 Latest scans---Cancer free 12/2013 Still Cancer Free MO wants no more CT scans (not sure how I feel about that)
Blessed and Very Much So
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Whey powders taste the best - I'm a vegetarian with a milk issue so those kill me I usually buy sun warrior - it's vegan and they have chocolate or vanilla - this one is finely powdered so its not grainy - which is a plus - taste depends on your hubby they often have unflabvored, chocolate, vanilla or berry. I tend to add banana, strawberry (frozen), or blueberries, but you can buy bags of any frozen fruit or add fresh - I use almond milk - unsweetened - but you can use anything, milk, or soy, etc... you can even add peanut butter. It tastes like a milkshake but more nutritious...
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: Jul 2013 Posts: 6 Member | Member Joined: Jul 2013 Posts: 6 | Have any of you tried Levity for protein replacement? My father was buying ensure the chocolate flavor and we thought it was the best choice until someone who had throat cancer gave him a case of Levity. We are amazed at the difference in nutrican each one has to offer. Levity provides way more good things than Ensure ever could. Levity stopped his weight loss and there is a big difference in how he feels three weeks after using this product.
| | | | 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 | Is it Jevity? they are mostly made by the same companies, Abbott, and Ross products. I used Glucerna 1.5 Cal, 19.6 grams protein, 356 Cal, had Jevty too.
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: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2012 Posts: 111 | Hi Sandra, I still have swallowing problems, particularly starchy foods. I gave up on mashed potatoes very early on. The only way I can eat potates is a small amount of steamed new potato with a bit of creme fraishe.
Slippery food is the important factor for me. So I use lots of natural yoghurt, creme fraishe, mayo (combinations of the 3 sometimes) to help food down. For example king prawns go down a treat in my own Marie Rose sauce. I can eat a small amount of bread if it is smothered with butter and soft cheese. I keep up my calories (and good cheer!) with half a bar real (70%+ cocoa) chocolate each day washed down with a latte. Adding Chai seed, which is very healthy, swells to make foods more slippy. The best way I find to eat eggs is a Spanish ommelette (fried veg, cut small, with egg mixture added when veg cooked through, and cooked very slowley first on hob then under grill to keep centre moist). I recently also started using a slow cooker, following a suggestion on the forum, which helps to keep meat tender and means the reletless soups and casseroles are easier to make. I juice friut and veg to make sure I don't miss out on vitimins etc as cooked veg, salad and whole fruit is not possible. It is a journey of experimentation I'm afraid.
PS My diet is very light on carbohydrate and high in fats so I am curious to know what my cholesterol is and I am awaiting results - I will report back to on these. I am hopeful that I am ging to be high on HDL!
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol. 10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12. 12/07/11 RIG. RIG removed 05/05/12. 4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | Joined: Jul 2013 Posts: 24 Member | OP Member Joined: Jul 2013 Posts: 24 | So very blessed!!! I got my PEG tube out yesterday! I had gained 4 pounds and had gotten down to one feeding a day/sometimes two. Now trying so hard to keep pushing to eat different things so I can stay healthy!
Sandra 5/15/12 Diagnosed with SSC 6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51 8/20/12 PET scan showed cancer had reoccurred 9/4/12 Began Chemo and Radiation 1X cisplatin 2X carboplatin 35 radiation 5/28/13 Latest scans---Cancer free 12/2013 Still Cancer Free MO wants no more CT scans (not sure how I feel about that)
Blessed and Very Much So
| | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | Great news! Blessed indeed!
Nancy (53 at dx) Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs 7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo. 5/29/13 - Found primary 7/3/13 - TORS 7/8/13 - Emergency Surgery/Blood vessel burst in throat 8/9/13 - Peg in 9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck 10/14/13 - Radiation ended! 11/12/13 - PEG out!
| | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 188 Likes: 4 | It is Jevity and manufactured by Abbott Labs. I have been on Jevity as a supplement through my tube from week 2 of treatment. My tube should be out in early October so I congratulate you on losing yours. That has to offer a sense of freedom. Eating is a challenge but as you can understand from all of the postings many options exist.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yah tubeless!
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: Jul 2013 Posts: 24 Member | OP Member Joined: Jul 2013 Posts: 24 | Thanks everyone! Now I have a new problem. I've been crushing my meds and taking them through the tube. Now, I'm having to try swallowing all these pills. I have a tendency to get choked on them. Some because of the size and some because they are not coated. I decided to try crushing them and adding a little water to swallow that way. Something in the meds burned my throat really badly, also very bitter. Guess I'll go back to trying to swallow them whole. Does anyone have any suggestions about this? So proud to be rid of the tube and I want to get this part of the situation easier to manage. Thanks in advance for your help and encouragement!!
Sandra 5/15/12 Diagnosed with SSC 6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51 8/20/12 PET scan showed cancer had reoccurred 9/4/12 Began Chemo and Radiation 1X cisplatin 2X carboplatin 35 radiation 5/28/13 Latest scans---Cancer free 12/2013 Still Cancer Free MO wants no more CT scans (not sure how I feel about that)
Blessed and Very Much So
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Sandra - Don't know if this could help, but I've seen others here mention trying to get the meds in liquid form to make them easier to get down. Maybe ask your doctor about this?
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: 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 | I agree, liquid meds would do the trick. Another suggestion is to crush ed and add them into a spoon of yogurt or applesauce. That should mask the taste and burning. 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 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | The trick I used was to coat the pills in something slippery - a little bit of butter or some olive oil works - it avoids them starting to dissolve and stick. Coat it and stick the pill back as far as you can, then take a sip of water. It sounds gross but you can't taste it anyway and it slips right down.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yup even a gulp of a thicker liquid, I take my pills (vitamins) with a smoothie or almond milk. I have no problems.
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: Jul 2013 Posts: 24 Member | OP Member Joined: Jul 2013 Posts: 24 | Thanks! Good things to try!
Sandra 5/15/12 Diagnosed with SSC 6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51 8/20/12 PET scan showed cancer had reoccurred 9/4/12 Began Chemo and Radiation 1X cisplatin 2X carboplatin 35 radiation 5/28/13 Latest scans---Cancer free 12/2013 Still Cancer Free MO wants no more CT scans (not sure how I feel about that)
Blessed and Very Much So
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, Sandra some pills are not supposed to be crushed or even split due to an enteric coating - some NSAIDs (like my RA med, Lodine) is like this. Check the label or ask the pharmacist. These would be a good candidate for the slippery coating trick.
For the pills that can be crushed, you can get an actual pill crusher to make it easier.
Best of luck and congrat's on going tubeless!
Maria
Last edited by Maria; 09-26-2013 10:23 AM. Reason: spelling
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2013 Posts: 144 | What I am doing as far as getting my pills down is 1. Take the smaller pills first.(this in my mind kind of primes my throat for the larger ones)2. Don't over think it.(don't just do it but don't dwell on them getting stuck). 3. Don't panic if a pill doesn't get all the way down.( In the case of a stuck pill try more water first, if still in there have a small bite of food. I know that it can sound scary to put more on top of a pill that is stuck. but take the bite of food and follow with some more water.(or ensure for thickness). This has always worked for me and some of my HIV pills are huge. The worst you can do is panic, or try to get the pill back into your mouth from your throat. The food part is directly from my MD. Happy swallowing. And congratulations on getting the tube out! Shawn.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF 3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | Joined: Jul 2013 Posts: 24 Member | OP Member Joined: Jul 2013 Posts: 24 | Thanks everyone! Great tips and I will be trying them. I've about decided that crushing isn't for me. Swallowing them whole is working a little better and I couldn't believe the difference a thicker liquid (my milkshake) made in getting them to go on down. I try to just do water and that is getting some better too. I really appreciate everyone's advice and encouragement. So proud to have the tube out and going forward into my new 'normal'!!
Sandra 5/15/12 Diagnosed with SSC 6/20/12 Surgery-Hard/soft palate with RND, trach and PEG, teeth taken, Age 51 8/20/12 PET scan showed cancer had reoccurred 9/4/12 Began Chemo and Radiation 1X cisplatin 2X carboplatin 35 radiation 5/28/13 Latest scans---Cancer free 12/2013 Still Cancer Free MO wants no more CT scans (not sure how I feel about that)
Blessed and Very Much So
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Water is good but something thicker is better... try milk or a milk substitute to get pills down. I use almond milk or my morning smoothie. I don't take medication anymore - but I do take suppliments - vit c, d, etc...
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
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