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#194804 - 07/05/17 05:58 PM Re: Eating post radiation: Food fights [Re: sooner]  
Joined: Feb 2017
Posts: 58
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 58
Eleven weeks post treatment. For those of you with a struggle to return to eating, hang in there. We are moving forward with the speed of a glacier, but we are moving. Added in eggs and meatballs this weekend to the food he has ingested successfully. Still balancing with the pull between the VHC Boost PEG feedings and transitioning to food by mouth. If he eats a meal by mouth it is hard for him not to skip the PEG feeding near that time, but he never takes in as many calories by mouth. He can drink most anything now which is progress, too. Dry mouth of course is an issue. We have used many ideas from this site to compensate for that problem. Awaiting the PET and results before we decide what to do next about his PEG. At this point he could maintain by mouth if he was really motivated. Sadly, he still says that everything tastes like cardboard and nothing about eating is enjoyable yet. Still hoping that comes. I've invested in a high quality blender to help with the transition to more foods by mouth. Plus that will allow us to both eat the same foods. He still has zero appetite either. All in all movement in the right direction but still much slower than he would like.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
#194805 - 07/06/17 12:37 AM Re: Eating post radiation: Food fights [Re: sooner]  
Joined: Jun 2007
Posts: 9,649
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,649
PA
Thank you for the update! Im glad to see your husband is doing better with swallowing. Everything you described could have been said about most post radiation patients on this site. It seems to take absolutely FOREVER to get the sense of taste to match what we think things should taste like. Patients here have reported getting a boost to their sense of taste as far out as their 2 year post rad mark. How I wish I could tell you truthfully that everything will be ok in another couple weeks but its a slow go for almost all of us. The key to recovering is making sure to get enough calories in every single day. Next doctor visit ask the doc if adding a multivitamin or some high protein whey powder to his diet would help with your husbands recovery. Protein helps the body to heal so this could be something that would help. Ive used it successfully many times.

Best wishes with your husbands continued recovery smile


Christine
SCC 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 smile
#194807 - 07/06/17 01:33 AM Re: Eating post radiation: Food fights [Re: ChristineB]  
Joined: Apr 2017
Posts: 34
cougardad62 Offline
Contributing Member (25+ posts)
cougardad62  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 34
I can understand the glacier mode of speed... I am six weeks out and have sipped chicken broth and downed frosted Rice Krispies ( very soggy). I had roasted corn on the cob yesterday and today. Tasted like corn lol. Just drinking water and tube feeding boosts and smoothies. It hurts to swallow but I am motivated to try different things. I have an aggressive attitude about things. Everything has a twang to the taste but you have to experiment. I wish you and your husband well!!

Last edited by cougardad62; 07/06/17 01:34 AM. Reason: Misspell
#194808 - 07/06/17 02:48 AM Re: Eating post radiation: Food fights [Re: sooner]  
Joined: Feb 2017
Posts: 58
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 58
This made me chuckle. I just gave away a box of Rice Krispies. He let them get soggy and then said no way he could eat them. It kinda had a party when he could eat eggs yesterday. We will get through it one day at a time.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
#194888 - 07/17/17 10:47 PM Re: Eating post radiation: Food fights [Re: sooner]  
Joined: Feb 2017
Posts: 58
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 58
An update on the food journey at our house. 12 weeks post treatment, it is no longer a food fight. My husband ate 3 meals today and had no VHC Boost for the first time in months and months. We have had two recent meals in restaurants, yes, the kind where you order off of menus and eat like everyone else. No, nothing is like before treatment but it is good and a victory over this beast of a disease. So, if you are struggling with eating at your house, please don't give up. Just keep trying something. Making friends with a Vitamix has been a game changer for him. Hang in there and keep fighting. We are a work in progress here but progress is the important part of the message.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
#194890 - 07/18/17 11:41 AM Re: Eating post radiation: Food fights [Re: sooner]  
Joined: Oct 2008
Posts: 215
travelottie Offline
Gold Member (200+ posts)
travelottie  Offline
Gold Member (200+ posts)

Joined: Oct 2008
Posts: 215
NY state
Great to read your update sooner!

I just remembered about a food that worked early in recovery - canned crab meat sautéed in butter. And yes, my husband had major improvement in taste & smell and swallowing well past the one year mark, even some increase in saliva after 2 years.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
#194929 - 08/01/17 11:26 AM Re: Eating post radiation: Food fights [Re: sooner]  
Joined: Feb 2017
Posts: 58
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 58
15 weeks post treatment today. Wow, it has been a journey. On Friday, my husband is scheduled to have his PEG tube out! No one wants to have a PEG tube. However, I am so grateful for this device which has allowed my husband to get adequate nutrition and hydration since his diagnosis. The nutrition and hydration he needed to stay alive, recover, return to work, take hikes and plan trips with his family and friends. I am totally confident my husband can maintain his weight at this point without the PEG tube. Will it require constant maintenance and monitoring? Yes. Is it like eating before treatment? No. However, he can find things he can eat when he goes out with his friends and manage eating at work. Food brings him a lot less pleasure than before treatment but he has returned to eating 100% of his calories by mouth. He told me this week he has ever been happier in his life. So, if you are in the struggle of treatment or recovery, do not give up. We also found out this week he does need lung treatment or surgery for treatment related issues so this is a big week at our house! There are no medals or greater chances for recovery if you elect not to use a PEG tube. The goal is a cure not avoiding medications or devices. Do whatever you have to do to get through treatment, if that is pain meds or a feeding tube, do what you need to do and do not feel less heroic or strong than other patients. Everyone responds differently and has their own path to recovery. Everything said on this site about how important nutrition and hydration are in the recovery process is true. Do the best you can to meet the intake goals but hang in there if you or your loved one has periods of time when it is really, really, really hard to do it. Hang on to our good days until you can get to your own good days. You can do it. Good bye PEG tube. You have served us well but it is time to break up!


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
#194930 - 08/01/17 04:14 PM Re: Eating post radiation: Food fights [Re: sooner]  
Joined: Oct 2012
Posts: 838
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 838
Toronto, Canada
It's great your husband is losing the PEG. When John had his PEG taken out, it was close to Christmas and the MO allowed him two glasses of wine to celebrate. Unfortunately, taste changed caused the wine to taste like metal. But whatever, not having to be fed through a tube is worth celebrating on any day!.


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.
#194950 - 08/05/17 06:54 PM Re: Eating post radiation: Food fights [Re: sooner]  
Joined: Apr 2017
Posts: 34
cougardad62 Offline
Contributing Member (25+ posts)
cougardad62  Offline
Contributing Member (25+ posts)

Joined: Apr 2017
Posts: 34
Congrats on the PEG tube removal. Can't wait to get mine out as well.

#194952 - 08/05/17 09:07 PM Re: Eating post radiation: Food fights [Re: sooner]  
Joined: Jun 2007
Posts: 9,649
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,649
PA
Thank you so much for taking the time to return and post your update!!! To newer members who are starting their recovery or in the middle of getting rads, posts like this are a lifesaver. They give others hope that they too can get thru the horrible treatments and past the worst of the recovery phase. There really is a good life after going thru so much. Thank you very much for giving others the hope they need to get thru the rough days.

Congrats on your husbands progress with his recovery!!!! Im sure he is thrilled to be rid of the peg tube.

Wishing you both a wonderful future full of many good days and good health smile


Christine
SCC 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 smile
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