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#200083 04-22-2020 07:33 PM
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John79 Offline OP
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My name is John I live in Ohio with my wife and our pets. We have 2 grown children that have moved out of the nest. I'm 3 weeks into throat cancer treatments and I am struggling a great deal. Everything I put in my mouth makes me gag. They did not put in a PEG tube because they said it would be too risky with my body size. The only thing I was able to get down today was some jello, and I had to force that down. My wife doesn't know what to do for me and I don't know what to do. This will make week 3 and they say I need 7 weeks total. I have plenty of weight to loose but the doctors keep wanting me to maintain. I feel very alone in my circumstance. Any advice?


John
John79 #200084 04-23-2020 08:42 AM
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Hi John. I’m in the middle of radiation for tongue cancer. Did the doctor give you some “magic mouthwash,” which is liquid that numbs your mouth for five minutes so you can eat? Not sure if it would be useful for throat treatments, but it disguises the taste if your taste is being affected. I’ve switched to shakes only as that is the only thing I can consume. I put in peanut butter, some bananas, milk, and one box of high calorie boost into blender and blend it up, then guzzle it. You can also do one with carnation instant breakfast. It’s good to add in some protein powder to it, too. Make sure you have a good blender that can really pulverize this stuff. I just take the magic mouthwash and guzzle the shake - literally. It’s messy but I get it down. I’m sorry you are having so much trouble. I took a notepad and wrote 30 then 29 etc and have been ripping off a page after each treatment - a countdown. Keep reminding yourself that this is not forever. The treatment will end. Maintaining weight is important because your body will be Burning calories trying to repair the damage from treatment. Get plenty of rest. Make sure to have pain medication so you can get ahead of the pain. I’m trying to take it one day and one meal at a time but the advice is much easier to give than to actually practice.


Stage 3 cancer of right side of tongue
Tumor: t2.
Lymph nose spread
Partial glossectomy and neck dissection (2/12/20)
Never smoker
Completed six weeks of radiation on 5/6/20
John79 #200086 04-23-2020 10:38 AM
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Hi John, Do you have access to a dietitian at your hospital? I would make an appointment and get some advice. Have you let your doctor know that you’re having trouble with swallowing because of the gagging? It may be anxiety and there’s medication for that. You don’t want to lose muscle or become dehydrated because you can’t swallow. You will feel really awful when you become dehydrated. The doctors suggest checking the color of the urine as a way of checking whether one is dehydrated. There are still four weeks to go so it makes sense for you to get some help now.


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.
John79 #200087 04-23-2020 09:07 PM
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Hi John! Im so glad you have discovered our site. Sounds like both you and your wife are struggling and could use some help. You've come to the right place!!! I will do my best to keep it short but you and your wife both need significant help in a great may areas so take a deep breath and tackle everything one at a time. After rereading my reply I see its extremely long, SORRY!!! Im just trying to help.

First and one of the biggest concerns is your intake. Its also one of the things I tend to nag about. I'll just say Im sorry now if I become a pest about intake... it really is vitally important. Plus the better you do with intake, the easier this whole ordeal will be to get thru. This is going to sound strange but when being treated for cancer, it doesnt matter if you go into this weighing 500 or 99 pounds. What matters is that you can maintain your weight. During rads, losing weight is a red flag to your medical team that you are having a rough time and not taking in enough calories. If you arent meeting your daily calories its pretty clear the fluids arent being met either. Every single day you need to take in at the very least 2500 calories and 48-64 oz of water. If you are 100% positive you are taking in the 2500 calories and you are still losing weight then your daily minimum calories is too low, you need more like 3000 or 3500 every single day. I guarantee if you begin as soon as you read this and for a week (NO cheating either!!!) you take in 2500 calories and 48-64 oz of water every single day you will feel better than you have been.

You mentioned no feeding tube. Thats ok as there is a feeding tube you can get that does not require surgery placement and it can be installed right there in the doctors office... the nasal tube. No, its definitely NOT fun! Your daily intake must improve or you will end up not just having a much harder time of it but you will feel horrible too. Im speaking from experience... I suffered so much and felt so lousy I actually was convinced I was starting to die, I really wasnt but boy did it feel like it. I ended up being hospitalized a few times for dehydration and malnutrition and I had a feeding tube! The problem was I felt so bad mostly because I didnt adhere to the strict feeding schedule of watching my calories and fluid intake. I struggled with severe nausea which made it almost impossible to keep anything down. Looking back I would have prepared myself much better and surrounded myself with people who would help in taking care of me. Unfortunately I learned everything the hard way, my biggest issue was not having a caregiver... its a surefire recipe for disaster!!! Talk to your doc about getting extra fluids several days a week as its too hard to meet your daily minimum numbers. Hopefully its temporary and after following some of my tips you should feel slightly better. Just be aware in case you werent told ... rads is progressive. The further you go thru your treatments the harder it becomes. This is why its imperative you take the necessary steps immediately to turn this around.

Your wife is struggling too. Im so sorry to hear that!!! Caregivers are true angels!!! Get the Mrs on board by telling her everything you both are going thru is unfortunately completely normal. This is coming from someone who has been thru it and no matter how difficult it was and how much I wanted to quit, I still got thru it and am here to help you both to be successful. Caregivers have so much going on while watching the person they love go thru heck and not knowing what to do to help is not easy to handle mentally. Many patients and caregivers too take anxiety meds and/or seek out a therapist to talk with to help them get thru the rough few weeks/months. Its just another tool to take advantage of during some hard days/weeks. I also advise your wife to start reading both here and on the main OCF site. By learning more about oral cancer she will be better able to advocate for you and be a better caregiver. She also needs some time just for herself. Right now shes probably feeling overwhelmed. Everyone needs a break once in a while and by taking care of herself she will be better suited to take care of you. With Corona changing everyones lives so much its hard to guess whats open in your area. She could take a walk in the park on a nice day, get together with friends and/or other caregivers (as long as they're not carrying the virus as your immune system is compromised and will be for quite a long time so avoid people and crowds), go out for lunch with friends, get a manicure (if she can find someplace thats open... in PA nothing is open), read a good book or just take a nice long relaxing bath.

Im including a couple links to help you with several other things. Im NOT trying to overwhelm you at all, theres just soooo much new patients need to know.

You said you feel alone. You arent alone any longer!!! You are part of our online family and we're here to help both you and your wife. We have been thru it and learned an incredible amount of info and tips to make it as easy as possible. We can share this with you and steer you in the right direction to make this much easier on both you and your wife. Check in often and feel free to post updates, ask questions or just learn from reading others posts who have been down the same road and how they have fared.


OCFs List of Easy to Eat Foods

Main OCF Site, Understanding

Heres a list if easy to eat foods along with several other things that may help with your intake. It was originally created to be a guide to help patients who are trying to relearn how to eat after going thru rads but its for anyone who has any difficulty in eating. The foods listed are less spicy and generally have a smoother texture which helps patients who usually have very sensitive and sore mouths. The chocolate peanut butter shakes to me are delicious and very high in calories smile. I also have a couple links that explain in more detail about the importance of pushing your intake to be higher especially during rads and recovery. It really is VERY important!!!


Cachexia ---- muscle - weight loss during rads

List of Easy to Eat Foods


PS....
Here is a recipe for something I used to make and drink when I went thru treatments and recovery. The shake has anywhere from 1200-2000+ calories depending on how you make it. The list of foods above will help too, they mostly have a smoother texture and arent spicy which should be easy for most to tolerate.


(SORRY!!! But the way Ive always cooked is by eye, not measuring things so all my measurements are always 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
(as with all different product taken... 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, let the shake sit for a half hour so it melts a little or add more milk to thin it down to what works for your own personal preferences. Ive also recently discovered something new... powdered peanut butter which can be used instead of the usual big jar kind. Most OC patients lose their taste for chocolate right away and it takes them a little while to get it back after finishing... for some strange reason I could still taste it a little especially in the giant shakes or ice cold yoo-hoo which helped soothe my very sore throat. Maybe try drinking things that are ice cold, it could help with your throat swelling?


Livestrong - losing weight with chemo

Livestrong - Calorie Intake Importance

Diet and Nutrition during treatments



PS... In closing, I wish you all the very best with everything!!! I hope you find what Ive written helpful. One last thing... since I made such a long post, its easier if the things you want to discuss with your doc are right here at the end where you can find them. If you dont see your doc at your next treatment, flag down a nurse and tell them you are really having a rough time and need to talk with someone right away... remember they work for you and are available 24/7. Theres always a doctor on call if something happens at night or on the weekends. Good luck!!!!

1. Make sure you ask your doc immediately about the nasal tube right away!!!
2. Ask the doc to write you a prescription for extra hydration as currently you are having too much trouble with your intake to force feed yourself water, at least for now it will be a HUGE help and you will walk out of there feeling so much better than when you walked in. Its amazing how beneficial taking in more fluids can turn someone around so quickly.
3. If you are struggling to eat due to pain... ask your doc for a prescription for magic mouthwash (MM). This is something you swish around in your mouth about a minute, spit it out and your mouth should be numb for 20-60 minutes, long enough to attempt to eat. Its all about getting the most calories per bite or swallow. You will know your doing better and back on track first by feeling better and then by maintaining your weight. Also if you are in pain speak up and tell your doc... right away!!! Pain is something you should NOT have to deal with. Of course everyone is different and will experience things in their own unique way, but nobody should have to hurt. Its not at all helpful, in fact studies have shown being in pain (many are trying to put on a brave front) is actually detrimental to patients health so dont be afraid to ask your doc, remember they work for you! Speak up right away if your pain isnt being properly addressed. It could be something serious going on that the doc needs to be made aware of to check it out.
4. Tell doc immediately about any changes, no matter how minor you think they are. It could be the start of something very serious so its better to be safe and speak up. For example, take chemo (cisplatin) it can cause permanent hearing damage, kidney failure, and a host of many other permanent, serious health issues. A slight hum or difference in your hearing that isnt a big deal actually cold be the start of a major issue so always tell your medical team every single thing no matter how minor. If you dont speak up and get another dose of cisplatin then you could have inadvertently caused yourself to need dialysis. Make certain you tell your team everything!!! Even tell them over the counter things like taking a supplement, vitamin, herbal items you are taking as they could interfere with your treatments, making them less effective.


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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