Hi Lorie,
I am 6 months from finishing radiation and I also had a tube during my treatment. From about the 4th week of treatment on I used only the tube other then lots of water by mouth. I ate nothing by mouth, it was just to painful and didn't taste good. I didn't lose all that much weight and have put most of it back on already. I started trying out food about one month-6 weeks after I finished treatment, soups only with some crackers in it. I would get sooooooooooo discouraged each time I tried to eat anything. I missed eating so very much and wanted to feel "normal" again. I cooked so much during that period that my poor husband put on about 15 pounds! I spent awhile using the tube AND eating by mouth so I would get the proper nutrition. Then it seemed like all of a sudden my saliva improved and the soreness in my mouth improved and I could add a few more things to my diet. The day I drank my first Pepsi was a GREAT day for me! Now, 6 months out, I meet my 22 year old for lunch every Thursday at Applebees and we both order French Onion soup and the Southwest Steak, light on the peppers and heavy on the cheese............I clean my plate and it's delicious. The only troubles I had when I first started eating more then a few bites was that I would get SOOOOOOOOOO hungry, my stomach would growl and act up for hours after I tested out some food.
I am not a patient person, hate to sit still and I'm always on the move. This health crisis puts the brakes on your life for a short amount of time and then you find yourself at the starting gate again but with a different perspective on what the race is all about. Don't try to measure his progress daily, try to do it weekly. I don't remember who posted that when I was still sick from radiation, but those words made such sense to me.
Patience is the treasured card in this game, kind of like the "get out of jail" card in Monopoly...........we all gotta have one to get past go!!!
Take care, soon you will be advising others on this board.
Minnie

Thanks Minnie-

It is good to hear that the time line we thought was sooooo long and not "normal" is actually the same as many experienced. You are right that we need the "patience" card. It is rough to remember that when one day is good and the next seems bad again. I try to do as many "normal" things as possible but meals are just not "normal" and it is hard not to see that.

My husband's tongue burning seems worse today after using the Nystatin and we are not sure if it will get worse before better. The medicine doesn't hurt to use, so he wants to keep using it just in case in a couple of days it will be much better and he'll be able to eat.

Well, I must continue to pray for patience and for God to grant it to my husband as he makes this difficult journey.

Thanks for your encouraging words. I hope one day this will all be helpful to someone else going through the same thing.

Lorie

Hi Lorie,
If the Nystatin swish & spit is too irritating at this stage, you may wish to try Diflucan instead, besides Diflucan is the most powerful medication in it's class (I was taking 400 mg a day for a few months - in contrast, female yeast infections are treated with 1 100mg tablet - I was a living experiment - they told me they have never heard of anyone getting that high a dose for that long but I found out later that HIV/AIDS patients are given up to 800 mg's a day).

Early on I had fair days to horrific ones. Treasure the fair ones! Just when it seemed I coudn't go on any longer it would lighten up and I would get a little relief. I remember praying a lot for God's help, healing, comfort and strength during that period.

My experience was very close to Minnies (sans PEG tube of course). It took a month for my taste buds to start returning. Until then I had to force myself to eat. When I was able to try to eat (semi-solid foods at first - I had been on a liquid diet forever - by the way, I hated Boost and Ensure - it coated my throat and made me gag - I used Carnation Instant Breakfast instead - I tolerated milk pretty well). I had jones for all kinds of things, many of which ended up going to the dogs (I had to put them on a low fat diet!), but at least I tried them (probably drove my wife crazy but at least she was encouraged by the return of my strength and appetite). My experience was that natural foods tasted the best (in contrast with processed foods). It was about 2 months post Tx that my appetite finally returned. I still have a small problem with dry things like bread, cookies or chips but today I ate a whole bag of popcorn at the movies and it was no problem. For some odd reason I have taken to drinking a lot of Coke - I find that the carbonation helps swallowing a lot more than just plain water - it drives the doctors nuts though -they frown on Coke (I drink a lot of water also). It took a while before my throat was healed enough to tolerate anything carbonated. You'll just have to experiment with what works - and it will be dynamic and changing all the time. Acidic stuff was hard to tolerate early on, like fresh vegetables, salads, salad dressings, fruit and fruit juices - all the healthy stuff! You should be working with a nutritionist.

I am kind of surprised that you are getting Rx's from your dentist. My oncologist became my primary care doctor and coordinated and prescribed all of my medications - he also did the necessary monitoring by ordering and reviewing the bloodwork and other tests. Oncology is a kind of highly specialized internal medicine.

Weaning off pain meds helped also but don't be too hasty on that one. Pain management is a very important part of the recovery process.

The book I refered to in an earlier post was exceptionally good at covering almost of of these details. It was written by 2 oncology nurses and is very up to date. I didn't have to bug the advice nurse quite as often. It was espcially handy on weekends when my only other option was the ER.

If you had trouble with patience before, this will be a groundbreaking experience ;-)

Hi again Lorie,

I am so glad to hear that his spirits are up! That is a very important step in healing. The nystatin would work for me usually in 2 days or less. I had patches of stuff that would show up after taking the first doses. These patches would then go away. I can only guess at what it was (I imagined dead fungi) but I know the burning would go away. In your husband's case, he is in the window where the pain may still be from the effects of radiation and chemo (I didn't get chemo). The fungal (thrush) will definately make it worse so continue with the Nystatin at least a few more days. Nothing wrong with Diflucan either except it is a systemic (total body) type treatment and can be hard on the liver. Whereas Nystatin is fairly harmless except to fungi that it comes in contact with. If it were me I would reserve it for later if the Nystatin works. By the way I would take it for at most 3 or 4 days and then would not take it again until symptoms came back (2 or so weeks at first).

With regard to eating, I was perhaps fortunate in that my appetite returned rather quickly. I had a prime rib about 1 week after the end. Red (in fact rare!) meat was the only thing that tasted right throughout my treatment and if tender was fairly easy to eat. I took this as a sign that my system needed what was in the meat to rebuild).

Everybody is different in the way they recover. My suggestion is to be positive enough to keep your spirits up and do not let yourselves get down at all if you don't see recovery happen as fast as you want. As others have said if you look for positive change daily you probably will miss it, but if you look back weekly you will realize it is happening

AND GARY I am suprised! COLA?! that stuff is probably worse than anything.

Hi Mark,
well it doesn't have any Prop 65 warnings (mutagen/carcinogen) so it can't be all THAT bad. So what if there are 28 teaspoons of sugar in each can! Only real men eat sugar. I'm sure some idiot will come out with a study soon that says Coke is good for you, just like they did with butter, pizza, tomatoes, etc.

Liver damage was a big concern of mine also, especially since they discovered that I have hep C when I was being tested pre-treatment. I took a ton of Diflucan and it didn't hurt the liver thank goodness. It did suppress my white cell count and is known to do so. They eventually switched me to Nystatin and it seemed to work fine (and my white cell count returned to normal).

Like you also the first solid food I ate was meat -a very rare filet mignon and was it good! Slid right down. I send a lot of meat back these days because restaurants don't get how to cook meat rare (or they're too paranoid). Pasta seems to be the easiest to eat, right up there with Chinese food.

Gary & Mark-

Well, after using the Nystatin for 3 days my husband's tongue is burning more than ever and he is spitting up more "gunk" than he had been for a while. He stopped using it last night and I'm hoping it calms down soon. Did either of you have that problem?

The one soothing thing that he can actually drink is iced tea. He forces down Ensure when I have to be gone to work, he can't feed himself using the PEG tube (too difficult, needs 3 hands, because we manually do it...he does not have a machine that drips it in). He has found that, amazingly, coke doesn't hurt. He stopped drinking it though, 3 weeks ago, because we were afraid that it my have been inhibiting the healing of his tongue. There was only a slight difference when he stopped. Both the oncologist and the dentist say that if it doesn't hurt then there is no problem with him drinking small amounts. He does have to be careful to brush his teeth after so as not to develop cavities.

As far as the dentist prescribing the Nystatin, we have been fortunate enough to have a dentist that specializes in treating patients with oral cancers and he is in contact with the oncologist (who is the one that recommended him).

My husband's spirits have been very low the past few days. He says he feels as though there is something wrong because he isn't healing. He is also experiencing pain in his shoulders and left elbow (same side they found the tumor). Do either of you know if shoulder pain is a side effect of the radiation? He does have an oncologist appointment on Thursday and we will definitely mention this. I am trying to be positive for him and remind him that there were times he felt things wouldn't get any better, especially during chemo, and that all got better.

Thanks again for all your support. I print out your responses for my husband as he hasn't moved into the computer world yet.

Lorie

Hi Lorie,

I am sorry that the Nystatin didn't help.

That you have a dentist that specializes in oral cancer is really great.

As for his shoulder and arm pain, I had that and even recently have had shoulder pain. I had a radical neck dissection as well as the tonsillectomy and radiation. Much of my shoulder pain has to do with the surgery. Radiation is the gift that keeps on giving and some muscle pain is a possibility (starts in the neck and moves to the shoulder and back).

Please do mention all of the things that bother you to his oncologist. The troubles he is having are worse than some folks had but not outside the experience of several people here. It did get better for them, and I truly hope he starts to feel better soon, and let him know those feelings of doubt he is having are also common.

Take care

Well today is 15 weeks post treatment and my husband is still not eating. His tongue is getting better though, only burning if he tries anything acidic (juice or anything with tomatoes).
He tried a scrabbled egg and it got caught in the back of his throat and he started gagging. Thank you Gary for sharing about Carnation instant breakfast- that is working great! The Ensure/Boost was too thick and would add to the "gunk" in the back of his throat.

Don (my husband) is still discouraged because just when one thing seems to be getting better something else appears to take its place. He now has an ear ache that radiates down into his jaw and has made hearing from that ear difficult. The shoulder & arm pain are still there but with daily massages they seem to be getting slightly better.

The medical oncologist made us mad. He didn't seem to care about any of the symptoms and only recommended a disphasia clinic after I broke down during the visit...I was very very frustrated. His attitude has changed since the CT scan came back all clear...sort of "I cured your cancer now go away". We were very happy with our oncologists till now.

On the bright side, Don saw his primary care physician yesterday. He was GREAT!!! He asked all the right questions about every symptom and checked everything out. He is refering us to a GI specialist to send a scope down Don's throat to check for swelling and to see if the muscles that control swallowing are moving properly. The amazing thing is that no one has sent a scope down his throat at all during this entire ordeal. Don told him if they got the swallowing to work better he could put up with the burning/stinging tongue and would be able to eat bland foods. We were very happy after leaving...this doctor has a game plan and he spelled it all out. He also said sometimes the specialists have a very narrow field of vision and once you are out of that area they don't want to see you. Have any of you experienced this also?

We are really hoping this works because Don has had the PEG tube in for over 5 months now and we have been advised that if it has to be in for over 6 months they will have to replace the current one with a new one. Hopefully they will get the swallowing reflex to work and the tube can be removed for good.

The doctor believes that the shoulder and neck pain are just muscle aches, as some of you mentioned. Guess I will be continuing with the daily massages (hummm...wonder if this was planned). The ear ache is a result of the post nasal drip that Don is still experiencing. They have presribed Allegra for both .... has anyone had ear pain? When does the post nasal drip stop? The spitting up "gunk" is slightly less and it is now looking more "normal" in color...if that is possible.

Don has been putting vitamin E on his tongue...it seems to be helping. I have been putting Acidophilus in his food...trying to prevent any yeast from growing.

This is surly a rough road and I have nothing but admiration for all of you who have gone before us, you are truly an inspiration!

Thanks for all your help and encouragement,

Lorie

Hi Lorie,
I'm glad the Carnation Instant Breakfast is working for you. I liked the espresso flavor - for some reason I never lost the "coffee" taste bud. Coffee milkshakes worked well also. It took time for my tongue to heal also. It and the back of my throat where I received the bulk of the radiation healed the slowest. It takes a lot of patience. And I too struggled for a long time with multiple issues. I had an ear ache for a long time due to the eustacian tubes being fried out and having to regenerate (causing a fluid buildup). I don't think that the swallowing issues are that unusual this early. I still have swallowing issues once and a while. I gagged on eggs for a while. Have him try experimenting with the size of the morsel and where its positioned in the throat on the tongue prior to swallowing. Also wait until the really heavy post sleep gunk clears before attempting eating. Moist is good, butter, olive oil and mayonaise are great lubricants. I also always used a straw when drinking liquids.

The post nasal drip and thick saliva just stopped one day. The gave a decongestant and it helped a little - but it will dry you out though so it's a trade-off. I found myself just taking one before bed. A humidifier is a good thing to have also - I still use mine.

It's very easy (and normal) to be discouraged at this point - you may want to ask your doctor about anti-depressants.

Hi Lorie

I think the oncologists attitude is un-called for. Just becaue one follow up scan came back clear doesn't mean he washes his hands of your husband.. What about regular follow ups, is he not going to do those either?

I'm about a year and a half post surgery for first time around, still get sore shoulder at times. Took several months after the second surgery to get rid of a lot of soreness, something like about 4-6 months. I'm surprised I can't forcast weather with the aches and pains. Asked the surgeon about the surgery, and post surgery pain, he said I really didn't want to know the surgery details and what they do. OK...

Something a friend suggested to me as a home remedy about thrush was vodka and cranberry juice. No deal on the vodka, the alcohol is not good. The cranberry juice made sense though apparently something in that helps to fight yeast type of infections.

As far as getting appetite back for eating orally, kind of just have to force oneself to start, appetite then comes back kind of natural. Like "oh yea, I forgot what food tastes like, yum!"

Bob