Previous Thread
Next Thread
Print Thread
Page 2 of 11 1 2 3 4 10 11
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Leonard, the RO said my husband John was sensitive to radiation.i think that's why the swelling took a long time to subside. It also depends on how much radiation one has been given.


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.
Joined: Sep 2014
Posts: 87
Likes: 2
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2014
Posts: 87
Likes: 2
[quote=OES]I just know I am going hate Vanilla after this is all done.

Why do I say hate vanilla, not big on liking very sweet items, chocolate is too sweet for me. I have been sticking with Vanilla. [/quote]
Haha, I hear you on feeling like you'll hate certain things after this phase of your recovery is over. I had the luxury of owning a blender and a masticating juicer, so I was able to prepare myself a fairly wide variety of drinks to help me through it.

I don't have much of a sweet tooth either, but didn't find chocolate objectionable, so I added things like peanut butter, coffee, malt powder & cherries to change it up. Maybe it's because I prefer the darker chocolate, which has some more bitterness to balance out the sweetness. I'd make vanilla based shakes with vanilla ice cream and milk, adding various things to "shake it up" as well. Coconut milk, various fruits, peppermint extract. Also added a scoop of whey protein in most of them, in an attempt to make sure I'm getting some protein in my diet.

I'd get sick of the very dairy-heavy diet, so then I'd break out the juicer, which also let me feel as if I was able to get some veggies in my system & cut the sweetness down quite a bit. A simple green juice with celery, cucumber, some kale or spinach & an apple, really hit the spot for me.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Joined: Jan 2016
Posts: 55
OES Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2016
Posts: 55
Thank You I see all different times of how long for the radiation to wear off and things to get back to normal. This has been hard to accept. I have this date that people keep cheering me on to, you are at half time, only three more weeks to go. - It does not mean I am magically going to feel better or be able to drink a glass of water without being in discomfort.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Jan 2016
Posts: 55
OES Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2016
Posts: 55
I have the juicer and blender here, just not sure what to put in it. So hard to swallow. I will take some of your suggestions.

Thank You


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Sep 2014
Posts: 87
Likes: 2
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2014
Posts: 87
Likes: 2
Ask about the magic mouthwash if they haven't already offered it up as an option.

Hmm, what to put in a juicer and a blender. For juicing, I really like a basic green juice. So 4-6 stalks of celery, a cucumber, 2-3 leaves of kale, an apple (remove the core & seeds), half of a lemon (I don't use the entire half of the lemon peel, but put a little bit of it in there). You can tweak it based on what you might find in your fridge or what looks good to you at the veggie stand. Sometimes I'll throw some carrots, half a beet, spinach, a thumbnail sized chunk of ginger, or a pear in there. To me, this is to be used as a supplement to improve your diet. Even though I can eat almost everything again as I did before cancer, I still have the homemade green juice several times per week to make sure I'm getting enough fruit & veggies in my diet.

With the blender, you can make smoothies and milkshakes. For a smoothie, just use frozen fruit & add some liquid of choice (even more fruit juice, or water). Something like a frozen banana (just peel them & put the bananas in a bag in the freezer), a cup of other frozen fruit (blueberries, peaches, strawberries, mango, pineapple, or whatever you like), and some water or orange juice to thin it out. I'd also throw in a scoop of vanilla protein powder.

For milkshakes, I just kept a big 4 liter pail of vanilla ice cream in the freezer. When I wanted one, I'd add a few scoops into the blender, add a cup of milk and then whatever floated my boat. A couple of tablespoons of dark cocoa powder & a few tablespoons of peanut butter. Or a can of coconut milk. Or cocoa + malt powder. A cup of blueberries. Some cherry juice. Cocoa powder + some coffee I brewed in the Aeropress. There was no real recipe being followed - I just did what I wanted on a whim. I'd also add the whey protein powder if I felt I wasn't getting enough protein that day, but there's only so much your body can absorb & make use of.

Obviously these blender drinks are fairly high in calories, so don't overdo it if you can actually eat "regular" food! But for someone having difficulty eating & stuck with a liquid diet, it's an efficient way to keep your calories up while reducing the amount of food you have to try to force down.


Last edited by Vanpaddler; 02-02-2016 09:00 AM.

Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Hi Leonard, I just looked back at your initial post. Three or four weeks into treatment is still early days. You may find that as you move forward, it gets even harder to swallow. Have you been fitted with a PEG tube for nutrition? John was eating and drinking until about the third week into treatment, then it just got too difficult to even swallow a couple of sips of coffee.

The effects of radiation are cumulative, so you will notice the effects much more as you get more treatment. Can you at this point manage a poached egg, some yoghurt or some soup?

Do you have the support of a dietitian at the hospital? He/she will be able to help you decide what's best for you in your circumstances so that you can stay hydrated and receive the amount o\f nutrition you need.


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.
Joined: Feb 2016
Posts: 4
Member
Offline
Member

Joined: Feb 2016
Posts: 4
Sounds like you're currently in the same boat I was in 4 months ago.

I finished my 42 radiation treatments at the end of August. By the time I was done, I couldn't eat and I could hardly drink water. You know the routine. I was seriously starting to lose weight.

I took a couple Tylenol to try to stop the pain long enough to eat and I choked on 1 and tore my epiglottis. The next day, I went to the ER and was admitted for gross dehydration and difficulty due to the torn epiglottis.

While there, we decided to put in the feeding tube. It was the best decision we made and I wish I had done it at about Week 4 of my radiation to be prepared for when the worst hit.

With my tube in place, I could easily get 2300 calories a day of protein-rich liquid food. Protein is very necessary to rebuild cells and tissue killed by the radiation.

Now...taste and salivation. The good thing about the feeding tube, is I could get all the calories I needed while experimenting with different foods and drinks. To be honest, for 2 months after radiation, EVERYTHING sucked. It either hurt my throat, tasted awful or gagged me because of lack of saliva. I was discouraged, but my wife kept pushing me to try new things.

Slowly, things became edible again. Scrambled eggs were good again, but milk was bad. Oddly enough, steak was good, but chicken was not. In other words...lots of experimentation. Salt was a big issue. Anything with salt was VERY salty, so I had to learn to adjust.

By December, I had gained back weight and more and more was edible. I started reducing the number of cans of liquid food (Jevity 1.5) I drank through the tube as I was able to eat more regular food. By the end of December, I had gone an entire week without using the tube as I was able to find more food I could eat...and actually enjoy again!

I went ahead and got the tube out on Jan 4, about 4.5 months after my final radiation. In the past month, my taste and saliva have improved exponentially. I'm not just EATING food again, I'm ENJOYING food again! The issue with salt is mostly gone. I still struggle with pizza and spaghetti sauce, but I'm not sure why. The saliva is still a slight issue, but hugely improved.

My advice...get the feeding tube. Then you can recover your taste and saliva and not sweat the calories. It's a little inconvenient, sure. Yeah...I even peed on it a few times! It IS in the way sometimes. But it saved me and I believe that all the protein I was able to get while recovering helped me recover more quickly.

My PET scan says I don't have cancer anymore and things are good. My throat still does get sore but not like it used to. It'll get better.

I really think you should get the PEG tube. Hang in there.


Thomas
50/married/2 children
SCC - Base of tongue + 1 node - P16 pos
Diagnosed 5/2015
Positive PET scan - 6/2015
Tomotherapy (42 treatments) through 8/2015
PEG tube - 9/15 - 1/16
NEGATIVE(!) PET - 11/2015
Joined: Jan 2016
Posts: 55
OES Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2016
Posts: 55
Thank You everyone, I am really trying to avoid the feeding tube. I have 15 treatments left at this point of a 6 week process. Today while driving I expectorated ( I prefer this word over the one that begins with V) mucous most of the day in large quantities. Then did the same with water I drank. I am not getting the calories I need and my throat is getting worse. I guess starting to feel much better at three weeks after treatment may not happen.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Feb 2016
Posts: 4
Member
Offline
Member

Joined: Feb 2016
Posts: 4
Do you mind if I ask why you're trying to avoid the feeding tube? I ask because this was my original thought too. When I was at Week 4 like you, I felt OK. By my last treatment, I was in bad shape, wishing I had the tube. A few days later, I got one and my improvement was remarkable. My worst time was actually the two weeks after treatment ended. I slept all the time, the little bit of food I tried was awful, my neck skin was scorched and my throat hurt. But due to the feeding tube, I at least started gaining weight. Plus, I got that absolutely essential protein.

True story... About seven months prior to my diagnosis, a buddy of mine got the same diagnosis as I did. When I was diagnosed, one of the first things I did was call his wife for advice. The FIRST thing she said was, "get the tube." She watched her husband go from 210 to 140 lbs.

I know this is a difficult time and it's tough to know which decisions to make because you get so many different opinions. That's how I felt. I only had to have my tube in for a little over 4 months and I'm convinced I've healed so well because I got lots of calories and protein early on. If I had to do it over again, I'd get the tube at about Week 4-5 of my treatment. Things went downhill quickly after that.

Regardless of what you decide, I wish you the best. You can beat this!


Thomas
50/married/2 children
SCC - Base of tongue + 1 node - P16 pos
Diagnosed 5/2015
Positive PET scan - 6/2015
Tomotherapy (42 treatments) through 8/2015
PEG tube - 9/15 - 1/16
NEGATIVE(!) PET - 11/2015
Joined: Jan 2016
Posts: 55
OES Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jan 2016
Posts: 55
Thank You

You are correct the thought of the tube has me uncomfortable, freaked out in fact. But then again so does most of this process. The hospital would prefer I do not get the tube. They actually threaten you with it if you lose too much weight. I have been doing ok at maintaining the weight so far but you are correct. I am getting more uncomfortable and I am in the middle of week 4. I can not imagine how week 5 will be. I keep thinking I am almost there, almost done. The frustration is and I have said this before , each time I adapt the problems change. I will keep an open mind and I know how important the nutrition and hydration is. My wife is a nurse and she is trying to help keeps trying to introduce new options. I was doing ok with a few milkshakes a day, today was just not a good one.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Page 2 of 11 1 2 3 4 10 11

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5