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ak123 Offline OP
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My brother is in his 6th week of radiation and he can't eat a thing. The doctor said he most likely will need to go on a peg tube. I have asked him to join this forum but he keeps stalling it. I have sent him many of your advice and opinions.
He has told me he loves your advice and opinions. But he still hasn't joined. I asked him to send me what hes feeling and this is whag he said:

"Only soft food I can eat right now is egg yolk how mommy makes them ..I made a shake and wanted to cry...Maybe I'm putting something in it that has acid
I put ice cream, ensure, honey, kid peanut butter, milk, and Nutella ..I took one sip and it felt like I instantly got an ear infection in both ears that was unbearable...It was ringing for about 5 minutes, my eyes started to tear up. As far as my tongue goes..The mucositis is so big and bad that I can barely chew, I can't eat anything sour, hot, spicy, acidic, citric. Very sensitive to Hot and Cold foods. The back of my throat every time I swallow (even if it's my own mucus) feels like a knife is scraping it up and doesn't go away from the lidocaine and Maalox mouthwash (haven't tried swallowing it yet because of the taste)..Ask them how long does it take for the mucositis on the tongue to go away. That's the main thing that's holding me back from eating more. Other than the pain in the back of my throat ..These last 4 days the pain level has turned up like 60%. I want to avoid the PEG tube so bad. Ask them a milk shake formula that doesn't burn my tongue and barely hurts when I swallow. Tell them I said thank you."

Last edited by ak123; 10-19-2014 04:36 PM.

22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
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Sorry he is having such a bad time! My mucositis was awful as well. Towards the end cream of wheat with lots of butter (no salt) was pretty much the only thing I could eat aside from vanilla ice cream w/milk. Luckily ensure did the trick in keeping the weight on though.
Unfortunately I still felt pretty awful for about 1 month after treatment. Is he on pain medicine? I was on a ton of pain medicine (175 mcg fentanyl patch and dilaudid or hydrocodone for breakthrough pain). If he isn't on pain meds he should definitely get on them until his pain level gets better. For me I think everything peaked (pain/discomfort wise) at my last week of radiation (i only had 6 weeks), then it stayed around that level for about 2 weeks. I think that if he can still get enough Ensure down though, he should be able to avoid the feeding tube. However, if he does get on it I am sure he will only need it for a few weeks - it may be nice for him not to always have to worry about getting calories (that always stressed me out).

Sorry I probably wasn't too much comfort, I hope he starts feeling better soon!


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
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Emily, I will be very honest with you. Please pass this along to your brother for me. I know how this goes and understand how difficult it is, Ive gone thru it and struggled greatly. I also was hospitalized several times for malnutrition and dehydration. I dont want to see the same thing happen to anyone else.

If your brother is unable to take in the daily minimums of 2500 calories and 48-64 oz of water he needs to get either a feeding tube or a nasal tube to get his nutrition. If not then dont be surprised if he doesnt end up in the hospital for malnutrition and dehydration. Nobody wants a feeding tube but it is a tool many of us have been forced to use to get thru the hardest weeks of our lives. A nasal tube is great for short periods of time, plus no surgery.

Ask the doc for a prescription to get hydrated in the chemo lab. he will feel so much better after a couple bags of saline. He should get this done a few times a week. It will help alot!

When it gets to about week 5 thats when most of us really started to struggle. It will continue to get harder even after rads ends. Most patients will begin to feel better about 3-4 weeks after finishing rads. I know how rough it is but please hang in there and talk everything over with the nurses and doctors.

His sense of taste is not going to improve for several weeks. He must make a choice either to tough it out and eat/drink anyway no matter what it tastes to hit the daily minimums or to get the feeding tube. There is no sliding by when it comes to intake, he cant fool anyone, his weight and condition tell the story of how much he is taking in. Other patients have tried it all (including myself) rocks in their pockets to avoid the weigh-in drama. There is no way around it, lack of intake will get noticed. Plus the less you eat and drink, the worst you feel coupled with the radiation fatigue and you have one bad combo.

He should be taking pain meds. Many of us used the fentayl patch. It takes 24 hours to work and the patient must step up dosage and down as well as very carefully following all directions. Never cut, tear, bend, fold, rip or otherwise damage the patch and no long hot showers or baths either while wearing it. I would be surprised if he was on less than 100 (probably 50 or 75 to start). Magic mouthwash swishes before its time to eat and resting. Rinsing with the 16 oz warm water, 1 tsp baking soda and 1 tsp salt will help too but may burn so cut the salt back.


Try some of the foods on this list. I used to drink yoohoo. It soothed my raw throat and had plenty of calories too.

Easy to Eat Foods

Hang in there!!! When the going gets tough, the tough must keep going. We are in your corner and will help get you thru this. You are almost to the finish line then you can rest in your home for a few weeks until you feel a little better.



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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Pain meds are a game changer.

As always, the advice above is rock solid.

Get through today. If that takes a PEG, get a PEG. If that takes anti-depressants that you are dead set against (that was me) you take them. And you get through today. Tomorrow you can work out if you still need them or not.

..but today isn't tomorrow. Today is today, let's get through it!


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
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just ditto others.

Get pain meds working. One for general pain relief and other for breakout pain. The mouth pain is so tough at times. Swallowing can be so hard. You may try to take some breakout before eating and wait for it to take effect. That might help.

Sip a tablespoon or so of the lidocaine. Swish around in the mouth for a good 30-60 seconds. The gargle in down the throat slowly. Then try to consume some food.

Try liquified drink. Experiment with temperature.

You have to stay hydrated and consume sufficient calories to keep weight loss under control.

Of all advice, he has to get a couple liters of water a day or he will be in the ER in no time.

Good luck


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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ak123 - Good for you! You found a way to get your brother's words to us and what a great response you got! Some survivors just cannot come themselves to the forum - my son was on here just for a little while but he told me it just depressed him too much to see what others were going through. So I just kept relaying to him all the good, helpful comments. And you have such great knowledgeable and helpful comments above. Here are just a couple of things I might add:

Has your brother tried Christine's recipe for her famous very high calorie Chocolate peanut butter shake? (I can't find it right now but maybe someone else has it). Very softly scrambled egg with melted cheese on top was one of my son's favorites and just slid down very easily. Also, about the mouthwash for pain swallowing - my son had to switch back and forth between "Magic Mouthwash" and others since he found they would work only for a little while, but worked again when he went back to the original one. Re the dreaded PEG tube, my son felt the same way about it, and he "toughed it out" but just seeing him in such pain and not eating, I wish now I had done more to get him to agree to it. It is only a temporary thing and might make a lot of difference in how he feels. He can still swallow without having to use it all the time. Whatever your brother decides to do, you and he have a bunch of really great people here all ready to support you both in any way they can!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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AK123 I can tell you a whole heap of people have read your post and winced. Its a difficult time, probably the worst time. As things get worse, it all looks too hard and the finish line seems a world away.

But as you see in the other posts we have solid group of experience here. Not just our own experiences, but what we've learned from others. I'm very proud of this group and always glad I found it. Tell your brother he has many friends here and we will help him through.

I won't repeat the good advice above, but as you can see it falls into three categories. What to eat, what to drink and what meds to take.

What to eat, you see Christine's easy to eat food list, full of great ideas. The fact is there was a point where I couldn't eat any of it at all, but you can and should revisit that list later. Its trial and error right now. There are strange cravings that come and go, so an experiment may not work for very long. My advice is to try simple things. My wife tried elaborate combinations that on paper fit the criteria, but one mouthful and I said no and wasted an hour's preparation. Boiled rice and milk worked as a staple for me for a while. Porridge too. Mainly because despite what my mouth was telling me, I had no doubt what they tasted like. We also discovered a strange concoction of peanut butter and cream, poured over a soft poached egg. Smell is important. KFC potato and gravy, it smelled right, so I was able to trick the brain into thinking that was ok so I had some of that. This is where the caregivers really are vital. Mainly because the patient will simply run out of ideas to experiment with. But intake is critically important. You'll hear that over and over because its true. No amount of lecturing from you, us or the doctors will get him through, he needs to understand he MUST find a way to eat. He has to look at one of those Ensure poppers and think "vanilla thickshake" often enough until it replaces the "stale phlegm" signal the mouth sends. Sipping coffee can help too. Sip of coffee, mouthful of disgusting food, wash it out with another sip of coffee. Rinse and repeat.

What to drink is simpler. I found a lightly sparkling mineral water that worked. Don't go to the store and buy a case of anything. We still have 30 bottles of the soda water I couldn't drink. To a normal person it tasted fine. It tasted fine one week, then tasted foul the next. Again, its trial and error, and fluid intake is vital too. Lots of small sips. Frequent mouthwashes too.

Meds. He should be all over the pain meds by now, and knows the consequences of not taking them on time. Watch for constipation, that can lead to a whole new adventure. The lidocaine didn't work for me, it tasted foul and made me gag. Pain, on paper, is the easiest thing to manage, but in reality its never that easy. The meds will be constantly reviewed by the doctors, and he needs to get all the pain relief he needs. No time to be a hero.

Also on meds, have a think about his mental state. Is he depressed, is he anxious? Is he having trouble getting to sleep, or trouble sleeping too long? At different points I was on antidepressants and anxiety meds, even saw a psychiatrist. Its not permanent, nothing to be feared or stigmatised. Its perfectly normal with everything going crazy for the mind to take a beating as well, regardless of how well supported he is.

I go back and look at the other responses now and realise I've repeated a couple of things. Well so be it. Its all true, and maybe the repetition will show him different ways to look at the same problems.

Aside from his caregivers, his greatest asset right now is that he sees the medics every day when he gets zapped. They've seen it all before and have a million ideas, secret recipes and tricks. Your brother will probably know all their names by now, I hope his team is as good as the one I had. He should report every change in symptoms, there is usually a trick to make it easier. But there's no magic bullet. This is a tough time, no mistake.

Its not a cliche to say your brother is doing well. I can tell by his words he is suffering, but he's fighting hard and looking for new ways to fight it. You keep coming back here and post as often as you need to. Someone somewhere in the world will probably be online to help you and we are with you all the way.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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I can understand your brothers reluctance to join any group. I didn't join here until 3 years after my first cancer diagnosis. Even after, I rarely, if ever, posted during any of my subsequent treatments, but after I did. Anyway, It doesn't matter where he is getting proper advise from, wether through you here or his medical team. Dr. Google is very beneficial in my hands, others, maybe not.

As far as Mucocitis, milk, milk products, have lactic acid, sugar, so it can burn. I couldn't drink or eat it, and luckily I had a Peg tube when needed. A straw may help get past some of the burning, sores. Many develop thrush and is difficult to distinguish Mucocitis from thrush other than the removable white coating on the tongue, which is not always necessarily present or it can be a viral or bacterial infection too or combination. If so, that needs to be treated properly with the appropriate medication.

My radiation center sprayed out my mouth daily with saline solution after each radiation session, which helped with thrush, and Mucocitis. A water pic spray may be similar if the center doesn't do it. They also did IV hydration.

The salted warm water, baking soda mix is pretty standard. As mentioned, if the salt burns, cut it out. I seen a study where virgin organic coconut oil was added to this mixture, and reduced mucocitis pain. More studies are needed, but said there is no harm trying. I also used Glutamine powder to rinse, swallow. This helps repair tissue in the mouth, throat, stomach, in addition, is often used for neuropathy. Others have used Manuka honey for mouth healing.

My last treatment I only used NeutrSal, Supersaturated Calcium Phosphate Rinse, instead if the salt/baking soda rinse. It helps with mucocitis and dry mouth, but I don't know if it's available in your country. MuGuard here, may also be similar.

Brushing the teeth may be difficult. Some may use a baby brush, a sponge stick which helps get in the back of the mouth, and a neutral, non irritating fluoride toothpaste. I always used Biotene toothpaste, no alcohol mouthwash.

Good luck, and hope this helps.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Manuka Honey has been mentioned as having healing qualities on these forums. Just go to upper right search box and type in Manuka Honey from New Zealand, and you will see lots of comments. As with anything you try, it's a good idea to mention it to the doctor just to be sure it doesn't interfere with any meds that are already prescribed for your brother.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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One quick one to add to the ideas list, fresh oysters. I love my seafood but prawns tasted like rubber bands and were dry to swallow. Oysters have good protein and are super easy to swallow.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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