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."
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, 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.
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!
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
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!
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.
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.
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.
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.
Okay... you've gotten some good advice here to pass along - acidic foods can burn but at this point I'd be willing to bet anything burns. I used to take a pain med (this was the last week and the first week after treatment finished) wait 15-30 minutes for it to kick in, and then rinse with magic mouthwash and swallow (some you can swallow some you can't he needs to know this when he gets it from the pharmacist) magic mouthwash numbs for a short period. SO I would have my mouthwash and chug an ensure. I did this with the high protein high calorie ensure 4-5 times a day. He needs more calories so he would have to have more. It would still burn like acid but I could get it down (13 gulps!!! one breath midway!!!) Then he should clean his teeth, rinse with a water pik (luke warm water or salt water) and then SLEEP IT OFF.
hugs..& wish him the best - he's at the hardest part, but in the home stretch.
PS - the waterpik really helps with the mucositis, and thick mucous.
I would love to thank every single one of you individually but I just am swamped today with work and my brother. So I thought I would respond to all of you.. Thank you all so much for the wonderful advice. Your advice has made me
So happy and during the most difficult time of our lives i thank god that I met
All of you wonderful people.
My beother went to the ER yesterday morning because he couldn't tolerate the pain anymore. They wanted to release him but my mom (one tough lady) demanded that he stays there overnight as the dilauid pain medication helped him a lot. He hasn't slept in days as he would wake up every 10 mins from
The phelm in his mouth. We were sent a suction machine that he was using. He finally got some sleep yesterday. The radiation dovtor had him skip his radiation yesterday and today.
This morning he got his peg tube In.
He has done 2 big bags of cisplatin but he is set on skipping the third. I know many people have skipped the 3rd. Should I worry if he skips the third?
You can do as much as you can do. Cancer treatment is basically bombard your body with as much toxins and radiation just short of killing the patient. Each person has a unique threshold so you can't worry about how much in absolute terms, just that he is receiving the maximum treatment while balance off the short and long term side effects. Take comfort he is receiving great care and not try to second guess doctors. Good luck.
I skipped the 3rd dose. It was not a light decision, but my tinnitus was driving me nuts. Its not uncommon for there to be some complication to warrant skipping the 3rd dose, and I was told the difference the 3rd dose makes is not critical. I wasn't shedding any tears I missed it, I was horribly sick with the first two.
Ditto to donfoo. The third dose decision should really be a medical one, by an oncologist familiar with all the details of his case.
Skipping the third dose is pretty common.
Ask the doctors about getting a prescription for extra hydration several times a week in the chemo lab. This will help him so much! He will instantly feel better after a bag or 2 of saline.
Kris was not able to have the 3rd dose of Cisplatin. His White cell count was too low. We were told studies show no difference in outcome between those who got either 2 or 3 bags of Cisplatin. But that there was a survival difference if the patient only had 1.
I know that Kris hated that chemo and he has told me he will never have chemo again, ever.
Tammy
Hi folks, just throwing this out there. We started week 3 of Cisplatin- 1 x per week for 7 weeks and daily Rads for 7 weeks. The lymph node has decreased substantially and the BOT which made it almost impossible to swallow 3 weeks ago, has shrunk enough that the can swallow and talk so well that you would never know he has this tumor. Has anyone experienced or heard of stopping the prescribed treatment early? I have asked the docs and we cannot do that, but I was just curious if anyone has.
Thanks so much
I have never heard of a planned series of radiation or concurrent chemo-radiation treatment stopped early voluntarily. Often a few treatments may be missed or treatment may be stopped early if the patient can no longer tolerate the side effects.
Chemo is combined with radiation to boost the effectiveness of the radiation. Chemo does not kill cancer so it is not a curative treatment. Chemo is not always done concurrent with radiation so it might be possible to stop chemo and continue radiation. Keeping chemo going and stopping radiation would only make sense if the goal changes from curative to palliative and allowing the chemo to stop or reduce the cancer but not kill it.
Given you are just a few steps out of the starting blocks, plan on going the distance and taking each day as it comes. Most generally get a couple weeks of a free ride before the side effects turn up. Stay close here and keep reading and posting for advice as the road gets bumpy. Good luck.
Stopping is a very bad idea. It would mean that for the most part everything he has gone through to this point has been a waste. This cancer can be HIGHLY aggressive. Though it has a good response as HPV related SCC, doesn't mean that he is cured. Out of sight doesn't always mean gone. All it takes is one cancer cell to survive for him to face a full blown recurrence - and to be honest even though HPV BOT cancer is said to be more easily treated and cured than non HPV related scc, there are many people here who have had recurrences and many who have died - this is even after a full round of treatment etc... so no - no one that i know of has stopped treatment unless it was with the intent of letting nature take its course - which is a horrible way to go, or they've been told that they are terminal.
its hard... kinda like 5 weeks of continuous labor and then some - but it is doable.
hugs and strength to you.
Just to add in stopping treatment unplanned like this may even speed up cancers proliferation due to regenerization of cancer cells. Also, I had to stop my induction chemo in 2009, medically, no other choice, as I was hospitalized long term from the toxicities after 5 days. As such, no other cancet treatment, chemo or radiation was given indefinitely, although I was clinically clear just from 5 days, I eventually had a pathogical recurrence 8 months later, and numerous times thereafter.
Thanks for the feedback gang. It is just crazy how great his voice is now, and swallowing is easy. We just started week 3. We are almost 1/2 way there. I knew the answer in my heart, but I just wanted to throw it out there. Just in case there was somehting to it. I know the road is going to be tough soon, but at least I have all of you to talk to and know you are supporting us.
Thank you all from the bottom of my heart!
Oh Sandy, your initial post made me want to shout out No. As has already been explained that would have been a sure fire guarantee for a recurrence going forward. I'm so pleased that you did not really consider this as an option.
Kris had a clear PET 3 months post rads and Cisplation. But, there it was again just a few months later. He was HPV positive. Treatment must always be completed to maximise benefit.
I hope the next few weeks go well.
Tammy
Thanks Tammy,
I knew we had to finish to treatment, but he feels so good, he wanted me to investigate it. Our team of course said we had to continue until finished.
Have a nice day. I am so happy that Kris is clear now.
We just left our appr with the chemo doctor and he said "you got through the 2 big bags of cisplatin. Your kidneys look good.. Your white blood cells are down. With all of your side affects we don't recommend the third bag. We do recommend you do carboplatin on Friday if your blood tests from today come out good." Has anyone had 2 big bags of cisplatin and 1 carboplatin?
Sorry, but I do not remember anyone here being switched to the carboplatin due to their white counts being low. Ive seen the chemo changed because of hearing problems being reported.
I had induction chemo which was three cycles of cisplatin, taxotere, and 5FU. During radiation I received weekly carboplatin which I did not feel at all.
The MO stated it was far less toxic in reduced amounts on a more frequent basis and being a platin it still served the purpose as a radiosensitizer to the radiation.
In general, I believe both are effective while some give the edge to cisplatin but carbo does the job just fine. There are studies with varying results so believe what you may.
Good luck
He has had many problems like too much acid.. The other day we rushed him to ER because he was throwing up buckets full. I think he should do the carboplatin just because it would be more reassurance. But sometimes I worry. The doctor never mentioned carboplatin until now. I trust the whole staff but sometimes I'll have thoughts in my head like "they said if he did 2 cisplatins he will be good. Why do they want to do carboplatin now too? Is it for the money?" Then I tell myself to stop thinking like that because he did have extra nodal extension and the more he treates the better.
Kris only had 2 doses of the Cisplatin . His White cell count was too low for the 3rd dose. There was never any talk of switching him to Carboplatin. I would think the low white count would preclude it too.
Tammy
Maybe it's not low enough but combined with the other issues he's having maybe they're pushing for carbo as its less toxic. Ultimately - many people get through this fine with just 2 - if you are concerned and want a 3rd bag of chemo - then I would go with the Drs. suggestion and do the carbo..l hugs and best of luck... Almost there...
John could not have taxol and carboplatin if his white cell count is below 1.5, which has happened. He had to wait until the white cells rebounded. Now he is on a reduced dose so that he can keep to the schedule of once every three weeks. I need to add, though, that John's treatment is palliative.
I had two bags of cisplatin, horrible tinnitus with each one, and they decided to skip the 3rd bag completely, which I am told is not uncommon. I asked about Carboplatin, but they said they needed to set up for that, which I took to mean they needed to plan it somehow, and being so close to the dose date and so close to the end of the radiotherapy, they said it wasn't an option.
Hi everyone, he did carboplatin yesterday and today he feels awful and is throwing up. I told him lets go to the ER but he is against it and just wants to stay home. I hope he stops throwing up soon! PS 1 more radiation to go on Monday!!
Hope your brother is feeling a little better than he was earlier. It's good he has only one more Rad to go on Monday! Yay! Before my son's last treatment, he was feeling so awful I thought for sure he would have to skip it, but I think just the thought that it was the last one got him going. If your brother is still throwing up, maybe there are some nausea meds the doctor could recommend? I know my son was on nausea meds during his treatment and had tried more than one before finding something that worked for him. Let us know how he's doing.
Make sure your brother is staying hydrated, too, especially with the vomiting.
I'm really glad to hear your brother is nearly done with treatment. I'm sure it hasn't been an easy road, and the next few weeks will be rough also, but ilittle by little he will start feeling better.
If he continues to vomit, contact his doctor. Maybe he can prescribe something to help with that. And as others have said, he needs to stay hydrated.
Hi everyone my brother completed his last radiation on November 4th. Tomorrow will be 2 weeks. He is still on his feeding tube. He just took Zofran through his feeding tube and then threw up. He threw up on Saturday night too. Did anyone experience throwing up even two weeks after completion of radition?
This is pretty normal but if it continues frequently then he should get checked out. Tube feedings can be hard to tolerate and can cause nausea. Just remember whatever comes out must get put back in. Since he just finished rads only 2 weeks ago he probably is still feeling pretty lousy. His intake daily must hit the minimums of 2500 calories and 48-64 oz of water to help him with his recovery. If you can get him to push more and hit 3000 or even 3500 calories it can only help his body to recover faster.
Usually feedings that are too fast or thick will cause the throwing up and nausea. If he is doing pump feedings then slow down the rate. If doing gravity or the push methods, slow them down and add more water. Have him sit still and upright for at least 30 minutes (preferably an hour) after a feeding. This should help his stomach to settle and help ease the nausea.
Hang in there, the worst is almost behind you. Only about another week or so and he will slowly begin to feel a little better. Dont be surprised if the recovery takes many months, its a long road but Im sure with you helping he will do great.
Best wishes!
ak123, it seems like most of the males were going through extended periods of vomiting during and after our treatment when I went through treatment. One member used to describe it as "polishing our teeth from the back side", even. Just hearing a side effect of nausea made me vomit. Zofran and Emend weren't used often and were my lifesavers.
Even with the PEG, I vomitted often. Saturday and yesterday would have been a welcomed relief. I eventually was fed intravenously for months (TPN). Try not to worry too much but stay on top of the hydration. I had an enteral bag and had pedialyte gravity fed while I slept. That gave me back some electrolytes plus it wasn't as bad as far as the nausea. Put as much effort into the hydration as you would anything. That will impact quality of life as much as anything n
You can see the finish line fo pr treatment, stay the course. Best wishes for smooth sailing.
Thank you so much Christine and uptown!!!
Ok everyone my brother typed this up lol (and told me to send it to you guys)
Hello my helping friends,
So my brother finished his 33x Rads to the head and neck area on November 4th. He lost all of the hair on his beard and on the back of his neck where his actual head hair was. Now the hair line has exceeded all the way up to where his ear lobes start. He is concerned to when/how his beard hair + his head hair on the back of his neck will grow. Also a second concern is on the surgical side of his tongue, right after he was finished with radiation... The white coating peeled off on it's own to become an all pink tongue.. Now two weeks after, it's half pink (non-surgical side) and half white (surgical side). Does anyone know if the white coating will become pink again? Thank you all for helping my younger brother by taking time out of your day to cope with his concerns!
Sorry but I dont know for certain if the white side will turn pink and match the original color. But I do have a suspicion the coloring will always be just a little off as its transplanted tissue. This is actually something that is virtually unnoticeable.
As far as the hair growing back goes, that can take a while. the radiation is still continuing to work its "magic". If I remember correctly, I first noticed my hair growing back a good 3 or 4 months post rads. But then again, everybody is different and will recover at their own pace. best thing that can be done to speed the recovery is focus on intake. Adding high protein whey powder to the diet (ask doc first) should help promote faster healing.
Best wishes!!
Hi there same with me... my hair was in long enough to add extensions to in august I had finished treatment in may. At that point I had 1.5 inches of hair in the areas I was lacking!!! as for the two toned tongue mine is a little different in color still.. but I like it.. ;o)