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Radiation treatment / advice on getting calories i #199774
02-08-2020 11:51 AM
02-08-2020 11:51 AM
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muddyb00ts Offline OP
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Hi, I've posted a few times, I'm a 44 year old female non-tobacco user. I had a small SCC tumor in the left side of my tongue. I had it surgically removed, but it was deeper than they thought, so I underwent neck dissection and a second partial glossectomy because a second look at the pathology on the first surgery showed that some cancerous cells were likely left behind. Then, due to the pathology on the second removal which looked like they got it all, but the size was borderline and it was growing perineural, so they wanted me to do radiation as well. So here I am, 13 radiation treatments down out of 30, so 27 to go. Tuesday is the halfway mark, not that I'm counting 😉.

So far: (or skip to the bottom for question)
#7: No radiation side effects until #7 when I started getting a salty taste in my mouth and the tip of my tongue was getting a little sensitive.
#8: Salty taste worse, sensitivity about the same.
Off day : Salty taste nauseating, sensitivity making eating a little harder (avoiding harder foods like crusty bread, granola, etc)
#Off day: no change
#9: eating is very hard, everything feels like broken glass in my mouth, salty taste still strong, brushing my teeth is now limited due to pain from the brush and toothpaste burns my mouth
#10: had 1 small slice of soft bready pizza, very painful to eat, unable to eat more, had soup instead. Sense of taste is definitely diminishing.
#11: got macaroni salad down avoiding the red onion because it burns! Started saltwater/baking soda rinse per doctor instructions and got a softer toothbrush and kids toothpaste which makes brushing less painful. Bought Cloraseptic spray to numb my mouth due to constant burning.
#12: came down with thrush on the tip of my tongue, doctor prescribed dexamethasone rinse and Fluconazole tablets
#13: less burning sensation and white plaque improved since yesterday, almost gone by the end of the day, but still hard to eat, salty taste might be slightly improved, but sense of taste is almost gone. I can sort of taste the first couple mouthfuls, then nothing. Ate 1 cup of macaroni and cheese, it was a fight to get it down. Using Cloraseptic spray before each meal to help with pain from eating. Between meals almost no pain, but energy is starting to go down.


Tips/Advice?
#Off day (today) starting to wonder how I'm going to get my calories and protein in from here on out. It was like an hour and a half mental work out to prepare to drink a protein drink. Trying to get 1700 calories (meeting my Fitbit goal of maintaining my weight) and the 60g of protein my nurse recommends. Any tips/advice appreciated.

Last edited by muddyb00ts; 02-08-2020 11:52 AM.
Re: Radiation treatment / advice on getting calories i [Re: muddyb00ts] #199775
02-08-2020 12:38 PM
02-08-2020 12:38 PM
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Michigan, United States of Ame...
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DavidUofMsavedMe Offline
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Michigan, United States of Ame...
1700 calories a day seems like a low number to me. Going through treatment requires lots of energy. I've been aiming for 2500 calories or more per day. That being said, I do not have mouth sores yet. 9 radiation treatments in.

Nutritional drinks like Boost or Ensure have protein and many other vitamins and minerals we need. You can try using them (or milk) when making Oatmeal or Cream of Wheat for extra protein.

Do you wear dental guards during radiation?


It is humbling the number of people involved in my care (@ a CCC). Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
Re: Radiation treatment / advice on getting calories i [Re: DavidUofMsavedMe] #199776
02-08-2020 01:41 PM
02-08-2020 01:41 PM
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muddyb00ts Offline OP
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1700 calories is hard, I don't think I can do more without help from a numbing rinse or pain meds and my doctor is reluctant to give me either, although I haven't asked directly on the pain meds.

No, I don't have a dental guard. I was told I didn't need one because I have no metal fillings?

Honestly, I have little confidence in my radiation oncologist and every interaction with her is confusing and non-productive. Much of the reason I posted here is to get more information to advocate for myself because I think I have to at this point. Even my pharmacist says my doctor's instructions on my dexamethasone rinse are weird and she asked me to double check them with the doctor...

Frustrating.

Re: Radiation treatment / advice on getting calories i [Re: muddyb00ts] #199777
02-08-2020 08:06 PM
02-08-2020 08:06 PM
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muddyb00ts Offline OP
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I just found Boost Very High Calorie online. It's 530 calories and 22g of protein in 8oz. I hope not to have to rely soley on this, but it's nice to know that 4 of these will get me through a day if needed.

Re: Radiation treatment / advice on getting calories i [Re: muddyb00ts] #199778
02-09-2020 04:14 AM
02-09-2020 04:14 AM
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ChristineB Offline
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As you read posts on our forum, you will notice I frequently discuss daily intake minimums. I cannot stress enough just how vitally important your intake is! Every single day from when first diagnosed right thru at the very least the first anniversary of finishing rads patients should take in a bare minimum of 2500 calories and 48-64 oz of water. I know it sounds like its alot especially for those already doing rads but its definitely NOT too much. Pay special attention to your weight as losing even a pound a week is discouraged. Losing weight is a huge red flag that the patient is not taking in enough calories. I talk about intake so much to try helping others avoid what tripped me up the most during rads. Its way too easy to skimp here and there thinking a few hundred calories isnt so much that tomorrow will be better. That quickly turns into a game of catch up where "tomorrow", the day intended to make up what was shorted the day before never comes as intake will continue to dwindle lower and lower daily amounts which makes you feel worse and worse. All cancer patients require higher calories than regular healthy people do. Their bodies are burning up calories at a much higher pace trying to fight the cancer and also rebuild itself. If that wasnt enough, OC patients have side effects that affecting their mouth and throat make eating and drinking painful, difficult and for some, almost impossible.

My memory is lousy and getting worse as I get older. Its unbelievable to me how Im able to retain so many details from my rad/chemo experiences from back in 2007. I'll never forget those horrendous weeks where I felt so awful, I started to think I must be dying. Nope!!! It was all from my struggling with my intake that caused severe malnutrition and dehydration , making me to feel so terrible, definitely something no one should ever experience! I went thru several hospitalizations for malnutrition and dehydration which was very traumatic being a single mother with 2 teenagers (15 and 17 years old) at home who needed me but I wasnt able to be there which I still beat myself up for. One of my worst days of my entire life was when I didnt have the strength to walk, my son struggled to get me into the car and drove me to the hospital where he used a wheelchair to take me into my oncologists office. The check in lady (without an appointment) sent us immediately into a treatment room, my doc came right in and in one look at me without examining me or even asking a single question, she admitted me on the spot. I would not wish that experience on my worst enemy!!! This is why I tend to nag OC patients about their intake so they can avoid going thru that kind of heck, it is preventable by adhering to the daily minimums of 2500 calories and 48-64 oz of water. For many OC patients, they require even more calories which isnt always easy to do. Taking in 3000, 4000 or more calories every single day still isnt too much. This high intake is similar to an athlete in training who requires 7000 or more calories a day to maintain themselves. Most treatment facilities have nutritionists patients should talk with on how they can get the most calories per swallow during rads and recovery.

As far as the dental trays... Im pretty sure this is the fluoride trays needed to help protect the teeth from rads. It really is something very important!!! Rads is very hard on the teeth. I ended up losing my teeth from rads even though I had and used the dental fluoride trays. Something like this should have been discussed right in the beginning so the patient has time to get an in depth dental exam, cleaning and any questionable teeth either filled or pulled with weeks to recover before any treatments start. Some areas of the main OCF site could be under construction as new info/findings are constantly being added and updated.

Ive included a link below to the main O CF pages where you may want to begin reading thru the Understanding and Treatment sections. You will find hours of reading about all kinds of things that are relevant to OC. Im pretty sure theres even a part in there about the treatment guidelines all US physicians and treatment centers must adhere to. Its a long flow chart with all kinds of scenarios given to create a patients treatment plan. Another important topic is why Comprehensive Cancer Centers (CCC's) are so important, they have been scientifically proven to provide better survival results than smaller local hospitals who may not be up to date on all the latest things for OC. Its probably way too late to go back for a second opinion, especially since you are already doing rads. Anyone reading this who has not yet started being treated, if you havent yet been to a CCC, its a very good idea to try getting into one even if its just for a second opinion. It sure cant hurt to hear what the top cancer facilities in the US have to say about your case along with their team based approach so everyones on the same page.

Main OCF Site... Understanding

NCI... CCC list


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
Re: Radiation treatment / advice on getting calories i [Re: ChristineB] #199783
02-10-2020 12:07 PM
02-10-2020 12:07 PM
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muddyb00ts Offline OP
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I appreciate your post and emphasis on getting calories in, and reading other threads where you've posted the same advice is what lead me to post this originally, but my question was how to get those calories in when eating is so hard?

The high calorie Boost drink I found is helping me exceed my 1700 calorie a day goal and now has me thinking how healthy it is to limit my intake to Boost alone?

With that in mind and no contact with my doctor until Wednesday, I'm experimenting with other high calorie soft/liquid foods. Today I combined Campbell's cream of potato soup made with while milk and a half can of corned beef hash added. It looked a lot like cream of dog food, and with a very limited ability to taste, I have no ideas how it tasted, but I got half of it down for lunch with no pain meds, and am pretty confident I can get the rest down at dinner time. With 3 Boost Pluses, that gets me to 2000 calories for the day.

Anyone else have recipes for getting lots of calories in small volumes? Cold ice cream hurts and chocolate tastes awful to me right now for some reason.

Last edited by muddyb00ts; 02-10-2020 12:07 PM.
Re: Radiation treatment / advice on getting calories i [Re: muddyb00ts] #199812
02-17-2020 12:46 AM
02-17-2020 12:46 AM
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Paan Offline
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I was given clear liquid boost by my dietitian because regular boost was impossible for me since I had real bad mucus problem for anyone with that kind of problem this could make difference

Re: Radiation treatment / advice on getting calories i [Re: Paan] #199840
02-22-2020 08:56 PM
02-22-2020 08:56 PM
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muddyb00ts Offline OP
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Thanks for the reply, I didn't know those existed and I'm currently nauseated by dairy products because of a weird sir milk taste in my mouth, so the timing is perfect!

It looks like Ensure Clear and Boost Breeze are the options. I'm going to the store to try to find these tomorrow. Thanks so much!

Re: Radiation treatment / advice on getting calories i [Re: muddyb00ts] #199843
02-23-2020 06:03 PM
02-23-2020 06:03 PM
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MST Online
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For my special dietary needs that require not to take in dairy. the Kate Farms option worked. Its entirely plant-based so maybe that would be an option for you too. Check with the doctor before making any major changes to the regular diet.


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