My name is Robyn and I am newly registered to this site. I found the foundation while doing a search for support groups. After reading a good deal of posts, I am positive someone out there may be able to provide me with some good advice and/or insight...

My grandmother was diagnosed with throat cancer last year (I apologize for not knowing the medical terminology for her type). She went through radiation & chemo...and the doctors were able to remove almost all of the tumor. We are all extrememly happy that she made it through... She is the kindest and most loving person I have ever know.

The aftermath has proved almost more trying than while she was in treatment, though. Her saliva is gone and her taste buds are wreaking havoc on her mouth. She has a feedtube...which she does not dare to get rid of. She is angry and depressed. She is 75 years old. Understandably, this has changed her.

I have tried to encourage her to try new foods...medicines for the dry mouth...etc...but she is easily frustrated. She is on an antidepressant. If anyone has any words of advice or any insight and ideas to help her, I would very much appreciate hearing from you. I would love for her to join this site on her own...but it's me for now

Thanks in advance to anyone who takes the time to reply...

Hi Robyntc and welcome to the site. You didn't mention how long it has been since she completed treatment and that would help us a lot to give suggestions appropriate to where she is, but here are a few things that I know anyway. First she should be seeing a nutritionist on a regular basis. It's probably not probably not her tastebuds wreaking havoc but thrush and/or maybe even ulcers from the radiation. When was the last time she saw the ENT? If it has been a while he (or she) should be contacted right away. If it is thrush, it must be managed quickly. It is very common post treatment and in people with dry mouth. Antibiotics can make it worse if she is taking those as well.

Most of us were pretty angry and depressed at that stage. I would talk to the oncologist or even get a referal to a psychiatrist to evaluate how she is responding to the antidepressants. She may well be undermedicated or need a different medication.

If she is early post radiation than it can be a couple of months before she turns the corner and progress is very slow - she may only notice slight changes in 3 week increments (and I'm basing this on a 50+ year old's experience).

God bless her for getting through it- it's a tough road at any age. I give her my personal promise that it will get better.

Thanks Gary! I appreciate your response...

She started radiation in February of '04. Its been a little over a year since the treatments ended. She has had thrush a couple times...and was recently on antibiotics. I sent her your response and advice. She hates to have to call the doctor...she doesn't want to bug him all the time! Maybe she will listen to you

I mentioned to her that seeing a psychiatrist would be a good idea too. She is not too open to that yet... I'll keep trying.

Thank you for your kind words... Hope all is going well for you.

Hi Roby. I have no ideas for you but just wanted to say your grandma would be in my prayers. Has she ever thought of seeing another doctor? I am wondering if someone different could be of more help to her.

God be with you,
Barbara~

Try a different approach. You have to convince her that the psychiatrist is not the "lay on the couch and let's talk about mother" kind of thing but rather an MD that specializes in managing brain chemistry medications. It's just normal part of the entire team concept for managing cancer and it's side effects.

If she had XRT (regular but not IMRT radiation) she may never regain salivary function but may periodically battle thrush forever. Thrush can be fatal if it goes systemic and very difficult to treat if if migrates to the esophagus. That is why she needs to deal with it quickly. The thrush can cause all of the systems you mention, very sore mouth, difficulty swallowing, etc.

All of us have these fungi in our mouths but dry mouth, antibiotics and compromised immune systems can alter the bodies defenses against them. She may need to be on a maintenance dose of Diflucan or other antifungal.

Feb '04 poor dear - that's a long time to suffer! But tell her that's why the doctors get the big bucks! Besides they probably LIKE seeing a 75 year old survivor.

Barbara & Gary...thank you both! I appreciate the messages...

I asked her to call the doctor about having the thrush checked for again.

Being in this site also prompted me to find a support group in this area. They have a wonderful program close to where she lives, with all types of activities and support options. We will be visiting soon... This website makes me want to be more proactive

Thanks again!

This may sound absurb, but a dentist friend of mine recommended using an over-the-counter vaginal medication suppository, such as miconazole (brand name Monistat). You simply melt one in your mouth to fight yeast and thrush.

I have no idea if this is at all toxic, or has any bad side effects.

It sounds gross but may work. Before trying anything like this you will need to ask her Dr for permission.

Not absurd if it works Gross...yes, maybe...but not absurd! Thanks for the idea!

Michael.
we shouldn't giving medical advice here and suppositories are not indicated for oral use. Tell you dentist friend to stick with dentistry.

There are plenty of options for oral candiadiasis - in pill form or liquid swish & spit.

I agree here. Off label use of products by doctors is a reality, but they put their license on the line if something goes wrong. With two proven Candida killers (Diflucan in particular, which is going generic in a couple of months) why any doctor or dentist would recommend an OTC product is beyond me. As lay people we probably should not recommend things like this, though I know this was mentioned in the spirit of helping someone. I wonder if the doctor has considered that the ingestion of some drugs, which are topical and not designed to be intentionally or accidentally ingested could be a serious lawsuit waiting to happen....

Now that we have plenty of disclaimers after the post, I am leaving it here. This is one of those instances where as one of two people with "delete post" capabilities; I usually use it to protect the foundation and the posters from liability. But it has been awhile since we discussed this and the post serves a useful purpose being left now.