Hello,

I am looking for input from anyone who has had candida in their esophagus. Heather is currently battling this and right now, it seems like she is not winning. She had a few white patches in her mouth, but they came and went, so it was not diagnosed early. I am going to call her surgeon today, but I would appreciate hearing from anyone who has had this.

I'm not even positive it is candida, but that is what she is being treated for with Diflucan. She has only had 3 doses and maybe it just takes longer before she will see results. But if she doesn't soon get over the nausea and vomiting, she will end up in the hospital. It has been 11 days now and she still throws up about half the time. She will have a good day and keep a little Ensure down, then the next day she is throwing up again. I'm hoping the surgeon will do a scope or something to determine if there is something else wrong.

This is a great example of why a multidisciplinary center is the best place to receive treatment. We didn't even know which doctor was best equipped to correctly diagnose this. You would think it would be easily recognized, but that doesn't seem to be the case. I guess if your mouth is covered in white fuzz, it is easy. But who knows what is going on in the esophagus or stomach?

Thanks,

Rosemary

Rosie,

Although, I did not have candila in my mouth but I did have a lot problems with ensure during my radiation treatment. I actually drink the medical food they nose fed me in hospital which is called " Fibersource HN", when I told my oncologist about what I did, he said that is the best I could get. If Heather had problem with Ensure, maybe you could try "Fibersource HN". It is spy milk based with no artificial flavor. I odered them from local pharmacy.

Thanks WZ. I was beginning to wonder if we should perhaps switch to something else besides Ensure. She did use it after her surgery and had no problem with it. But that doesn't mean it's not causing problems now. I will check into it.

Rosemary

Diflucan will take more than a week to have significant effect. While Candida is relatively harmless when you get a bloom of it in your mouth, once it progresses into your esophagus and even into your stomach it can become a very SERIOUS situation and hard to get rid of. Please stay on top of the doctors, and ensure that this is monitored very closely. Also be sure that she is not throwing up her meds... Diflucan has to be taken for many consecutive days and you must maintain a constant blood level of it to have therapeutic effect. My gut instinct is this is not related to what she is eating.

Brian,

Thanks for the info. We are careful to make sure she doesn't throw up after taking the Diflucan. She tries to take it at about the same time each day, but if she is queasy, we wait. After taking it, she doesn't move around for awhile because movement seems to set her stomach off. I also doubt it is food related, but we are willing to try anything at this point, so we are limiting the Ensure for now just in case. Saltines, moistened first, seem to be staying down okay.

Yesterday, she didn't throw up, but she also didn't eat hardly anything. She can not continue this way for long as she has lost more than 12 lbs. in the last 1 1/2 weeks. She is able to tolerate water in small amounts, so she is keeping hydrated.

We are going back to the doctors today and they are going to check her bowels for blockage. They say that could be contributing to the vomiting, although not the primary cause.

Thanks,
Rosemary

P.S. I'm beginning to wonder if I should stop posting so much. It seems like I never have good news about Heather's condition. I'm afraid some people just starting out may be scared more than necessary by reading about her many problems. Opinions from anyone, please?

Rosie,

Sorry to hear that Heather is still fighting with Candida.

It appears that Heather and I were almost parallel in our treatment, although we had different paths.

It has been more than 6 months since my diagnosis. I have gone through the lengthy surgery and the harsh radiation / chemo treatment, losing 48 lbs of my body weight. I had infections every month in Oct, Nov and Dec. My chemotherapy had to be halted for more than a week when I was hospitalized to drain the abscess. Because of the repeated infections, my Doctor is concerned that the infection may eventually get into my jaw bone causing osteomyelitis. I have done nuclear scan of jaw bone early this year and seen infectitious doctors for the infections and I am in the middle of Hyperbaric oxygen treatment right now. Three weeks ago, fearing of drug addiction, I stopped my OxyContin pain medicine and it left me with pretty strong withdraw symptom.

To make it short, I have not felt normal at all after 6 months of treatment. It seems to me the problems just came one after another and I start to wondering what will be the next. All I can do is to tell myself be patient and to deal with them one at time.


WZ

Hi Rosie,
I had thrush from the second week of radiation on for about 6 months. I took Diflucan and Nystatin and nothing helped. I ran a terrible fever for a while so had some antibiotic, however, I had no vomiting or nausea.

Finally a doctor in the dental dept put me on Dexamethasone Elixir USP 0.5mg for two weeks. This is some kind of a steroid, but it cleared it up in the two week period. This was 5+ years ago so medicines may have changed, but if she doesn't improve you might ask.

Subsequent to that bout, I had a prosthodontist tell me that when you have thrush you should not eat any sugars or anything that can turn into sugar, basically anything white - potatoes, rice, milk, bread, pasta, etc. - anything made with white flour that turns into sugar. Thrush feeds on sugars. So NOW THEY TELL ME.

Hope that helps and she is feeling better.

Rosie....please read the sites Candida page if you have not already, http://www.oralcancerfoundation.org/dental/candida.htm and remember...Saltines have no nutritional value at all. You need to try other things that will give her body something to work with.

Thanks everybody. I appreciate all the info.

WZ, I'm curious to know what type of withdrawal symptoms you had, because Heather has also been trying to get off the oxycontin. We were just told today that besides the danger of addiction, it also causes your bowels to shut down and you can get severe constipation, which causes all kinds of problems. Would have been nice to know that ahead of time.

Brian, I re-read the candida section and I do know that saltines provide no nutrients. And we will avoid them now anyway since they are a white flour product. (Thanks, Eileen.) But, how is a person to get nutrients if they throw up almost every time they eat? It doesn't matter what she eats, or whether it is taken by tube or by mouth, most of it comes back up. We only tried the saltines because that is the old standby food for nausea. If anyone has any other ideas, we are open to all suggestions.

Rosemary

Hi, Rosie!

OxyContin could cause constipation but I was fine, I think it may because I was also on antibiotics all these days which happened to have opposite effect.

My withdraw symptom was the panic feeling in the evening. I could not sleep at all for 4 nights, I felt short breath and racing heartbeat(I think this was called panic ?) . To me, daytime was fine. Another symptom I felt was muscle main all over my body and joint pain in both hands. Legs were very weak, had to go upstair slowly. Since I was taking OxyContin only for about 3 months, I was able to stop it without too much trouble. My dosage went from 20 mg/day to 60 mg/day and then back to 40mg /day.

Hi Sorry to hear about your daughter she seems to have a rough go of this. I know what you are going through somewhat because my husband has had Hairy Black Tongue, Canadidta, and they gave the drug that Brian suggested and are still giving it to him along with Mircle Wash. It burns and his throat hurts all the time it seems like when we clear up one bout he gets it again. Its like and on going with his mouth since the treatments. When he went to the hospital with last week they gave him massive doses of the diflucan and a antibiotic in IVs that helped the bacterial part but it has a ways to go with the fungus. I think its a problem that is going to always exist. Hope she feels better soon Bobbie

Thank you Bobbie, WZ, Brian, Eileen & everyone else!

The candida seems to be getting under control. And, although it probably did cause some of the nausea, we think they have finally found the reason for the vomiting.

Saw the doc yesterday & he ordered another test. A VERY long day - left the house @ 9:50 AM & didn't return until 4 PM! BUT the test showed that her stomach wasn't emptying properly. Some of the barium they put in the PEG tube went to the top of her stomach and just sort of hung there. That's why she kept throwing up.

They gave her a medication to help her stomach empty. So, unless they have missed something else, she should finally be able to get some proper nutrition and start the healing process. She does have more swelling than before and lots of pain along her jaw where it was cut and is having a harder time swallowing, so they are a little concerned about a deep infection and necrosis of the bone. She is on an antibiotic and, hopefully, getting some good nutrition will help clear these things up, but she will be monitored more closely now.

Thank you all for your concern and all the information you have offered.

Rosemary

Yeah Rosie,

I am so glad you persued this and finally found out what was wrong.

Here's to the healing process!!!!

Take care,
Dinah

Hi Dinah,

Thanks for the good wishes. It means a lot to hear from all you great people who have "been there, done that". No one else really seems to understand. We had a birthday party for Heather last Sunday. Not a very happy affair since she was still really sick. But she appreciated it and it was very small, just a few family members, so she just stayed on the sofa and relaxed.

Anyway, since I see her every day, I forget how bad she looks to other people that don't see her as often. A couple days after the party, my mother-in-law called and wondered if she should send her preacher out to see Heather. I guess Heather looked so weak and sick that she thought maybe the end was near. That was a real shocker! She might be having a lot of problems right now, but this fight is far from being over!

That made me realize again how valuable this forum is for patients and caregivers. I feel so sad for people that don't have this kind of support. I know I would be lost without it. Cheers to everyone who participates and especially to Brian!!!.

Thanks!
Rosie

Hi Rosie, your experience brings me back to the time when I was hospitalized during treatment. Relatives who visited me shed tears when seeing me so skinny and weak on the bed. My neck was all burned and bruised. But with the painkillers, in fact I didn't feel pain. I was only too tired to talk. They exaggerated my pain and suffering. Don't bother about what other people think about Heather. The most important is you stay with her, support and encourage her.She is so young and can definitely fight her battle through and be the winner in the end. I absolutely agree that very often it is the caregiver who suffers more. My husband's daily routine was seriously upset by me during my first several months of ordeal. For many times he wept! Rosie, a rainbow is awaiting you and your daughter after the thunderstorm. Be strong!

Karen, stage 4 tonsil cancer diagnosed in 9/01.

Thanks Karen,

We are hanging in there and are anxiously awaiting that rainbow. It can't come too soon! We are having a very hard winter in PA this year. Lots of cold & snow, sort of gloomy like Heather's treatment. Maybe the rainbow will coincide with Spring, an early one if we're lucky!
Thanks to everyone for their good thoughts and prayers.

Rosie

Hey Rosie,

You know when I was at my worst no one ever said anything to my face, but as you get better people start telling you how good you look!!! And that's when you still look bad. So, it makes you wonder how bad you really looked.

Heather will start getting stronger and better now, thank goodness you finally found out what was wrong. It will be gradual I'm sure and you may not notice right away because you see her everyday. But it will happen.

Give her our best and you keep us posted.
Dinah

Hi Dinah,

Heather was able to take 2 full cans of Ensure Plus today, 1/2 can at a time spaced out through the day. I'm sure some people are probably thinking "only 2 cans?", but this is the most nutrition she has had in almost 3 weeks. It all stayed down, no more vomiting! I'm sure it will take time for her to feel better, but at least we are back on the right track.

We saw the radiation onc. today and he figures she is about 3 weeks behind in the healing process. He also made the remark that, although her case is the worst he has seen, young people usually do have a rougher time with RAD. He's not sure why, but it seems that the RAD hits them harder. So I wonder why we were told in the beginning that since she was young and otherwise healthy, she could handle the full dose of RAD, chemo, etc. It seems like it is just the opposite.

Of course, she had to take the full dose of RAD and the aggressive surgery in order to have a fighting chance, but her age did not necessarily give her an advantage. Oh well, I guess it doesn't really matter. It is just interesting the things the docs tell you AFTER you're done.

Thanks again for all the good wishes. And we wish an easier recovery for all of you that are still in treatment!
Rosie

Hi Rosie. That's great news that Heather has been finally getting some good nutrition albeit a few cans of nutrition shakes - but hey, that's a whole lot better than before!! That is quite an accomplishment. I remember when my husband could only drink milk mixed with Ovaltine or chocolate syrup (choc. milk) and not much else - not even the shakes.....it took some time, and he did have some nausea and a few bouts of vomiting - but things did start picking up eventually. Please give Heather all our best wishes and tell her we are in her corner rooting for her!

Hi Rosie, Glad to know Heather is making progress on her diet. I am not sure how far your oncologist is true about radiation hitting young people most. At least he shouldn't say that Heather's case is the worst he has seen. This upsets people around.I think your previous doctor is right that not everyone can stand a full dose of radiation and people at a younger age can stand better. This was what I was told when given a full dose of radiation that if I had been 10 years older, I wouldn't have such treatment. ( I am in my 40s)Rosie, you must keep the strong faith that since Heather is young, she can certainly recover gradually. Don't compare with those who had a speedy recovery. Everyone is unique. Take care.
Karen.

Hi Karen,

Yes, we are trying to take it one day at a time. Heather is still very weak, but she is much better than last week, so she is making progress.
I think my statement about what the doctor said was misleading. He didn't say her case of cancer was the worst he had seen. He was referring to her recovery being so hard. He did go on to cite a couple cases where the patient had a rough recovery, but now is doing fine. So he was being optimistic. It was obvious, though, that he was surprised to see her in such bad shape.
Thanks again for all the encouragement.

Rosie

Dear Rosie and Heather,
Am very keen to know of your progress and have been interested in your symptoms as very simillar to mine.
I too have had nausea and vomitting from something blocking digestive tract - in retrospect I think it was a mixture of chemo(Carboplatin & 5 Fu's), constipation and poorly directed feeding tube. I have now taped my tube up towards my chest in order to point the inside section down into my stomach which worked miracles for the vomitting!(seems so obvious now). Keeping bowels moving (tough when on the morphine) seems to be a big factor with the nausea too. Hope Heather is taking more Ensure now - I'm up to 7 tins some days so have stabilized quite well.
The candida thing bothers me too - they don't know if my white tongue is due to Candida but they've given me Nystatin and Tantum mouthwashes which don't help much with foul taste. I've taken to rinsing with and sipping Aloe Vera juice/gel with ice - very refreshing if nothing else.
Am bracing self for next bout of chemo which they delayed due to severe side-effects but I shall feel better prepared this time.
Like Heather I was told that being younger would help my recovery (although I have a few years on her) but even the tube insertion was a rough ride through all my sport-fit abs!
Hope to hear good news from you,
all the best and everything is crossed for you,
Frances

Frances,
You are right about the constipation problem when one takes pain meds. We were very successful with liquid senekot. We ended up buying the generic "senna" which was just as good. Goes easily into the tube.
Meredith

Frances... Your white tongue is very likely Candida, and should be treated, not left alone. Candida can progress into the digestive tract and become a major problem. Once there it is VERY difficult to get rid of. The drug of choice is Diflucan, and even though it is a tablet, if you are unable to swallow it, it may be crushed and put through a PEG tube which I did on the many occasions Candida turned my tongue and other parts of my mouth snow white. Please read this page in the main body of the web site http://www.oralcancerfoundation.org/dental/candida.htm

Frances,

Heather's candida seems to be cleared up. She took Diflucan for 2 weeks. Besides tablets, it is also available in liquid form.
We are taking your suggestion about turning the tube upwards, because she still has occasional nausea. She switched from Ensure to Nutren and was up to 4 cans a day when our whole family was hit with a stomach virus plus Heather caught a cold. With her stomach upset, she cut back her amount of Nutren, but we are working on building it back up again.
It's really hard to keep her secluded from illness because she has a 6 year old daughter. Between kindergarten and the sitter's, she brings a lot of germs home and there is no way we can keep them totally apart. It's hard enough on Cati that her mom is sick, but it would be worse if she couldn't see her for days at a time.
Things are getting better, but we are still waiting for that rainbow!
Hope you continue to progress and good luck with your next round of chemo.

Rosie