#93242 04-05-2009 08:30 AM | Joined: Mar 2009 Posts: 18 Member | OP  Member
Joined: Mar 2009 Posts: 18 | Hi everyone. Im new here but have enjoyed reading all the posts thus far.
I need some advice. My husband has 4 more radiations left. He did not get a peg placed and has been able to maintain some nutritional intake through this process up until now. Now, his mouth is an absolute mess and it takes all he has a lot of times just to swallow the morphine. We both know that just because RT ends in 4 days, that we have a long road ahead of us still.
At this point and time, he considers having a peg placed as admission to defeat. But, he has quit taking any type of nutrition by mouth, It is going on 8 or 9 days now. What do I do as a spouse? If I bring it up at all right now, I get my hid bitten off and frankly, im too tired myself to go toe to toe. He is also talking about not going back for his last 4 radiations. Please give me some advice
Thanks
Traci ******* Spouse to Lew (59)(5 family members DX) SCC IVA/T1N2M0 BOT DX 9/08 /Tonsillectomy(cl)/ TX 12/08 (TPF)x2 /RT x35 w 7 wkly (Taxol, Carboplatin, Erbitux) Finish 4/09 / Port /no peg lost 105lbs/ 2/10 CT clear/HBOT x30/all teeth out and implants placed www.asilentepidemic.webs.com | | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi Tracy
well now is the time for all good caregivers to get tough girl.......If you dont fancy going head on with him then its stealth tactics and go behind his back.if you can get him to his next tx then while he is having his treatment find someone you can speak to and tell them in no uncertain terms that he hasnt eaten for 10 days.Failing that ring his doctor or a nurse and tell them.He will never recover well from RT in such a debilitated state,nutrition and hydration are the keys to success.
He may well rant and rave,he may spit the dummy big time,but what the hell you really have no choice,and its better a few tears now than a lot more later.
good luck
liz
Last edited by Cookey; 04-05-2009 09:31 AM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | 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 | Tracy,
Consider a J tube. It goes thru the nose in a minute and after an x ray to make sure it's in the proper spot, they pull the wire out of the tube and he's set to "inject" all the water and "food" and meds he wants. No surgery, hardly any discomfort and if any, it's momentary. It can be pulled out when he's out of that tunnel in appx 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: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | I closed the other post so that the responses stay together.
Traci, There are a few of us here that were able to get through without PEG. I recall very well the last week and it was hell. If he is being watched and kept hydrated I would imagine he can finish. I would think that if his medical care givers were worried they could supplement some nutrition with his hydration. I ended at the weight I was at high school graduation (thin but normal) after loosing 30-35 pounds. Recovery from the oral pain can be fairly speedy. I felt better even after one week (I was able to swallow throughout the treatments).
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Mark surely what traci is saying is that he hasn't taken ANY nutrition by mouth for 8-9 days,thats serious by any ones standards.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | I would be very surprised if his medical staff is fully aware that he hasn't taken any nutrition for over a week and are doing nothing about it. My recollection of those who got through treatment without a peg tube was that there were only a few days when they took NO nutrition. At the rate he's going, it will likely be 9 days already, plus 4 more days to finish treatment, plus at least 7 more days post-treatment when he is as sore, or sorer, than he is now. That's 3 weeks without nutrition which is very dangerous. I agree with Cookey. His medical team needs to know the extent of this.
My thoughts are with you -Sophie
Last edited by Sophie H.; 04-05-2009 01:20 PM.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | 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 | Traci
I know its hard right now. Please let your husbands doctors know about him not having any nutrition for days. This will make the whole process so much more difficult on his body. Without proper nutrition he will not be able to heal. Its not just losing weight, its being able to get energy from a balanced diet. Im sure he must feel terrible and with no nutrition going in, it only makes him feel worse. This is coming from experience and I had a PEG tube. I still was admitted to the hospital for malnutrition and dehydration. Tell the doctors right away! At the end, I was ready to quit too, but he cant. he went this far to give up now. The nurses can help you with this if you tell them how things are.
As far as a fight goes, Im sure you are exhausted from the whole process but dont back down. Your husband will not be able to heal properly if he doesnt turn around immediately and help himself. Dont let something like fear of an argument make you back down. Ask the doc for something called 'magic mouthwash", it will numb his mouth. Try giving him Carnation instant breakfast or even yoo-hoo just something to give him vitamins. I drank alot of yoo-hoo since its so thin, it was easier, but I had the liquid feeding solution for my PEG tube to depend on.
Best of luck with this difficult situation.
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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Mark.... you know I just love it when people equate body weight with heath or nutrition. Completely negating any science at all. Losing 45 pounds of what will mostly be lean body mass is not heathy, retards healing, and compromises everything from mental clarity, to strength, and immune response. You guys that think you were so tough, had an element of stupid mixed in with that tough. Sorry for the tough LOVE, to my good friend, but geeze I am tired of this lack of understanding. Cancer treatments are NOT A DIET PRORAM FOR THOSE THAT WERE OVER WIEGHT WHEN THEY STARTED THE PROCESS.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Brian,
Thanks for saying what I was thinking. Losing 35-45 pounds in a couple of months is nothing like being the weight of a high schooler. I imagine that getting through treatment without a peg tube is in part a way of having some control over a terrible process which I can completely understand. But, paradoxically, you may be gaining control in one way just to lose the control which is most important which is to control for the hydration and nutrition needed to maintain overall health.
Sophie
Last edited by Sophie H.; 04-05-2009 04:33 PM.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Mar 2009 Posts: 18 Member | | OP Member
Joined: Mar 2009 Posts: 18 | The medical and radiation oncologist are aware that he has not taken in any nutrition. From the start, the doctors have urged my husband to get the peg but ultimately it is HIS decision. They said they would allow him to lose up to 10% of his body weight before refusing to treat him further. That would have been close to 28 lbs which he has surpassed. They made an appointment fo rhim last week to get it placed which he did not keep. For the doctors to say they will not continue to treat is basically music to his ears. Solves his dilemma of not returning for the last 4.
David; thank you for your suggestion. I plan on pursuing it further with the doctor on tomorrow. (BTW its a NG tube - not a J tube)
Thanks everyone for the suggestions. I read them all to my husband.
Traci ******* Spouse to Lew (59)(5 family members DX) SCC IVA/T1N2M0 BOT DX 9/08 /Tonsillectomy(cl)/ TX 12/08 (TPF)x2 /RT x35 w 7 wkly (Taxol, Carboplatin, Erbitux) Finish 4/09 / Port /no peg lost 105lbs/ 2/10 CT clear/HBOT x30/all teeth out and implants placed www.asilentepidemic.webs.com | | |
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