| Joined: Dec 2009 Posts: 24 Member | OP Member Joined: Dec 2009 Posts: 24 | hello everyone! I have reached about the half way point in chemo and radiation. My blood work with the chemo has astonished my rn's Perfect readings so far. I wish I could eat how ever. even water does not taste right, My mouth is really burnt up and using the right washes for numbing and dr gave me liquid lortab but after a couple of weeks not working as it once did so i dont know whats next or available she also has me on JEVITY 1.5 my supplement for my feeding tube. I lost weight to 118 and well yesterday the scale tipped at 120 so gained a couple. fighting with insurance company for my Jevity, it is expensive but dr wants me on it. I should not have to go on worrying about my next meal but this is what is happening they wait till the last second to approve wich is really uncalled for. starting to lose my hair now but over all in good spirits. tell me out there that I will one day eat my good gumbos and food we took for granted with our embelished taste buds I want them back! keeping you guys posted and yea go SAINTS!
nov30squcelldec209tonect no treat yet "positive people +positive thoughts brings positive tomorrows"db
| | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 147 | YES! you will eat most of that good food you crave.......in time. There is a light at the end of this tunnel that is not another train coming. At almost 8 mos post treatment I can eat most things and for the most part can enjoy the taste. And it is enough to make me feel great about food again. So keep up those good spirits. We are all on your side cheering.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10 | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | I'm three months out and had a nice steak for dinner last night.
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | Don, glad you are doing so well. Its always inspiring to others going thru treatment to see someone who is having an easier time of it. Although its never an easy task getting thru this. You will eat agin, it might be a while but you will get there. If you are able to keep eating something, soup or yogurt, choc. pudding with whipped cream is good. Make sure no matter how difficult it gets to keep drinking water daily. Also stretch your mouth open wide several times per day to avoid worse problems later.
You can order carnation VHC thru the Amazon tab on here. Its 560 calories per can. Its so much cheaper than prescription formulas. I use it in my peg with a can of water and then a can of formula. Whats the Jevity? About 200 calories? This will help you to keep the weight on....2 cans of Carnation VHC and 2 cans of Jevity would do the trick, maybe even 3 or 4 cans Carnation VHC for you. Talk it over with your doc or nutritionist. Keep those calories up to about 3000 per day to keep your weight on.
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 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | It took me a bit longer (about 18 mo's) til I was able to eat anything more than soup and fruit smoothies and, of course, Ensure Plus, but that was largely due to a terrible yeast infection in my mouth that affected the taste of real food. Now I'm mostly eating normally (Lots of gravy and mashed potatoes help)and I can tell you, after all that time, eating is just awesome. It just takes lots of patience and keep trying things every now and then and 1 day you will be surprised that something actually tastes good. For me that surprise came in the form of won ton soup from the Chinese place around the corner. I completely expected it to taste awful but gave it a try. That was a real turning point. You'll get there in time. Congrats on hitting the 1/2 way point.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | 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 |
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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | the insurance companies make this process so much worse. i had to freak out on ours, letting them know that they could give me the stuff to give him or they could pay for him to finish his treatment in the hospital...i had cases of jevity, a pump, syringes, and feeding bags delivered to our home within 2 hours. ask ur MO about this. they should be able to help, too. maybe they could make the call for u.
glad to see treatment is going fairly well. 1/2 way!!!
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
| | | | Joined: Dec 2009 Posts: 24 Member | OP Member Joined: Dec 2009 Posts: 24 | hello Christine thanks for the response..you are so sweet! jevity is made by abbott same people as ensure. It is a formula that is high protein nutrition with fiber and has prebiotics to maintain and restore damaged gut flora. the 1.5 contains 355 cal/8 oz. I did pick up 2 cases of the carnation brk. hvc. and putting a can in, in place of one of the jevity. I do exercise my jaw opening it wide 20 times per day at least when i do think about it. So far christine I have no weakness at all no nausea either. thank goodness. I try to keep moving and busy the draw back is the feeding tube cause they have me setting at 70 cc per hr. well feeding takes 7-8 hrs plus you have to add water and or juices so = some more time but its all good! thanks again for being here for me and inspiring me to play it forward. donald
nov30squcelldec209tonect no treat yet "positive people +positive thoughts brings positive tomorrows"db
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Donald I have been exclusively on Jevity 1.5 since March of last year or about 11 months and while certainly not optional, it will work. I started out at 119 lbs after getting out of the hospital with a PEG tube (I did better the first time around w/o a PEG) and 6 cans a day of Jevity 1.5 plus a beer or wine have put me up to 136. I'm still 5'11" so I also know what it is to be considered skinny Keep the Faith, you will do just fine charm
Last edited by Charm2017; 01-28-2010 10:10 AM. Reason: typo
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | 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 | Donald...
As long as you are tolerating the feedings, its ok to up the rate. Work on gradually increasing it by 10 every 4 or 5 days. If you have a problem back in down again. I was at 70 for weeks before I upped mine. Im now at 150 and will stay at that rate. I do mine starting at about 4pm while watching tv. Then I let it finish overnight. If you do it at night, make sure you are propped up in bed. I have the head of my mattress about 8" higher and use 2 pillows so its high enough.
Jevity as well as all the different prescription formulas come in different strengths. If you are using the carnation VHC, add a can of water to it. Its thick and can clog up your feeding tube.
Im so glad you are doing so well. See, it just goes to show people what a good positive attitude will do. It might start getting harder as the next few weeks go by. Reach out if you need help, we are here. 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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Kelly. you and your steak just ruined my day. LOL Oh how I wish but my steak days are over for the last 2 years and no future in site. Donald, you are doing good. Just go for it and listen to Christine. Take anything for nourishment that you can put in.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Sorry Jim,
Does it help any that it was a very expensive cut. I have to have it very tender so now they are few and far between. To expensive.
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Donald, Who dat say oc can't be handled? Apparently not you, cher. Keep looking forward to that gumbo. I sometimes make a very "light" gumbo with chicken, no roux and the okra cut up but not sauted. The seasonings depend on what you can handle, at minimum celery, and onion and parsley. Just the soup part is great until you can handle the solids. For a delicious suppliment try the vanilla flavored soy protien powder from Whole Foods. Last year when I was on liq. and then soft foods after my jaw reconstruction my d-i-l found it and the dietician in the hosp approved it. I added to almond milk, yogurt,instant pudding, fruit smoothie drinks, etc. They also make chocolate. I think I only had one or 2 cans of Ensure - that stuff tasted awful. Check the ingredients on the can against the Ensure for the proper amount.
Where are you in LA?? I'm NO and we have a few others in the state.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Dnoald, I have one day a of treatment left, I do understand the pain. Like others told me on here, ask for the patch it has helped me wonderfully. I am actually going to ask they up it tomorrow, if at all possible. Or at least ask for more of the same amount to get me through the next few weeks of recovery. I will let you know how it goes.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Most folks here have had a prescription for Jevity and the insurance company should pay for it.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Kelly, now I have a food processor and am going to try to broil a good steak and then process it into pieces I can handle, LOL and The expensive cuts are what I always liked , especially the fatty parts.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Jim,
Rib Eye is the best. Has the most fat, which I can now have with no guilt.
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
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