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#195081 08-31-2017 12:31 PM
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Hello---I'm new and I am struggling with recipes. Finished radiation 6 days ago, lots of mucous, food gets stuck and of course.....it all tastes bad. I'll drink smoothies even so with protein and vitamins. So worse than what I imagined! Sally from South Dakota!

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Hi Sally,

Welcome to the forum. For the time being, smoothies, Ensure or Boost are your best friend. The taste will eventually come back. Poached eggs work well, as do soups. If you have a Waterpik, rinse your mouth frequently through the day with warm water and a drop of the magic mouthwash helps clears the mouth of the mucous. Persist for a few weeks more and you will find more improvement in the food department.



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.
Sally 2 #195083 08-31-2017 05:08 PM
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Welcome to OCF, Sally! Earlier today I sent you an email with info about posting.

You are brand new to the recovery phase. I know its not easy for you right now. The first 2-3 weeks are the hardest! You probably feel even worse than when you were going thru rads. Taking in enough is a big challenge for most of us right after finishing rads. Im sure your throat and mouth are very sore right now so its not easy to eat and swallow, plus your sense of probably taste isnt working either. Best thing you can do to help with building yourself back up is to focus on whats within your control... your intake. Every single day until at least the first year post rads you need to take in at least 2500 calories and 48-64 oz of water. It sounds like way too much but right now even if you took in 4000 calories every day its unlikely you would gain any weight. If you have lost alot of weight during your treatments its even more important to push yourself to take in at least 2500 calories (3000 or 3500 if you can). I know its not easy to do and right now is the worst part of the entire "adventure". Many of us have gone thru it and we forced ourselves to take in enough. I didnt do so well with this and ended up hospitalized for malnutrition and dehydration a few times... NOT fun!!!

If you are having trouble with water intake watch and make sure you dont get dehydrated. Your doc can write you a prescription to get extra fluids in the chemo lab. Pay attention to any changes and things that dont seem right. Most patients feel abandoned by their treatment team when rads ends. Suddenly they are left on their own without the routine of going to rads and seeing their medical team almost daily. You can always post questions here and we will do our best to help you. Dont be afraid to call your doc either. All oncologists have someone on call 24/7 even holidays and weekends.

Milkshakes and smoothies are easier than many things. Also try ensure or boost to try taking in the most calories per swallow as possible. The following list should help you to find things you can still eat easily like canned peaches (these will slide right down) or cream soups (helps with sensitive mouth sores). I also enjoyed yoo-hoo and chocolate milk during rads and recovery plus the extra calories sure didnt hurt.


List of Easy to Eat Foods

Here is a recipe for something I used to make and drink when I went thru treatments. This shake has anywhere from 1500-2200 calories depending on how its made. The list of easy to eat foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate. If you are ever eating and feel like the spices in your food have set your mouth on fire, milk will instantly neutralize the burning in your mouth. I also found room temperature foods were easier for me to eat or slightly cool. Anything hot bothered my mouth and hurt like heck.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder
(check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.

Best wishes with your continued recovery!


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
Sally 2 #195084 08-31-2017 06:38 PM
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Thank you Christine for your advice. It is a blessing to get to know others who have been through it and can offer suggestions. Today I tried the peanut butter chocolate shake. I am having trouble with mucous and have trouble with dairy but I did it any way.Did it feel unhealthy to you at first? I love salads and fresh foods but I also had to lose teeth and I am sad about that. I asked my oncologist for scopolamine patches to dry secretions so hopefully it will kick in. Now I read (of course, now) about products on the market to prevent mucositis but didn't even think to ask about it because I was meticulous with oral care and also used magic mouthwash. Has anyone tried the products like Gelclair or Mugard that you know of? Is it too late to ask my oncologist for it now? It does help to hear that
recovery is still pretty fresh and that this is just another day of radiation normality. Wouldn't it be wonderful to go to a center that cooks all the right foods for you, cheer you on, and has a doctor ready to answer questions? I'm so glad to have found all of you.

gmcraft #195085 08-31-2017 06:51 PM
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Gloria----thank you for your advice. The oral cavity looks pretty good, its my throat. Lovely shade of white, lots of mucous. I did eat an egg today...that was a big deal and later for dinner I had some mashed potatoes with gravy and home made soup. Coughing was a problem. I am trying to do this without getting a peg tube.....I actually gained 4 lbs during treatment. He has said more than once that
I need to use it or loose it when it comes to swallowing. Some advice I have read about in medical journals to heal mucositis faster is the use of L-glutamine which I add to smoothies and my rinse water. It has worked in clinical trials. Also organic aloe vera. I use the powder and add to water. It is supposed to help with inflammation. Because my cancer is believed to have been caused by silent reflux I worry about nsaids. I also swallow a teaspoon of honey once a day. I want all this to work and be cured in 10 days....of course, who doesn't? Thank you for your advice!

Sally 2 #195087 09-01-2017 04:50 AM
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Im sorry but I have not used Mugard or Gelclair. Many patients have found success with manuka honey for their mouth sores (mucositis). Heres more info...


Manuka Honey OCF thread

Manuka Honey Study from NCBI


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
Sally 2 #195089 09-02-2017 04:07 PM
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Yes I do have some lozenges which reacts with the metal taste so I drop them in tea. Thanks!

Sally 2 #195090 09-02-2017 04:20 PM
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Today I am bit sad because the metal taste returned. I had it just after my last treatment and used magic mouthwash and zinc. Does it come and go? I get so nauseated with it....just when I had hope of eating more today. Any tricks? Thanks!


Sally 2 #195092 09-02-2017 07:04 PM
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Unfortunately the recovery phase is NOT an easy one at first. Its full of ups and downs and a few setbacks thrown in there too. Hopefully your metallic taste phase will only be around for a short time, it should be only temporary. Most patients have a very thick ropey, gunky mucous towards the end of rads and the first couple weeks of recovery. I had that instead of tasting metal. Everything I ate tasted like it was over-salted and burnt. To me even bottled pure spring water tasted like it was loaded with salt and charred. That only stuck around as long as the thick gunky mucous then it was onto the dry mouth phase. The only thing I would suggest is using the magic mouthwash which you are already doing. You may need to take some nausea meds like zofran (prescription medicine) to help you get past the nausea the metallic taste brings.

Hang in there! You are almost past the worst of this experience.


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
Sally 2 #195134 09-15-2017 07:41 PM
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Hi Sally,
I hope this reply is not too late. I used MuGard throughout and post rads, and I think it helped. I only used the magic mouthwash a few times because for me it only helped for about 15 minutes after using it. Did you ask your doctor about guaifenesin to help with the mucositis? I was able to rent a suction pump during the period I had mucositis, and it really helped. Before that, I would be exhausted and feel nauseated after trying to cough up the mucous on my own. Have you been able to get one?


SCC 4/20/16, bottom middle of L side of tongue, T2, HPV-neg
Partial glossectomy 5/9/16, L lymph nodes removed (neg), nerve invasion
30 rad 6/20/16-7/29/16
Non-smoker, non-drinker

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