Hello everyone,

My name is Stephany and I am distraught over my mother. She was diagnosed last year with gum cancer that went to her jaw bone. Half of her jaw was removed and now a year later, the cancer is back and they want to remove all her remaining teeth and the rest of her jaw. I just dont know if that will matter since she did this before and the cancer came back. Also, her doctor is recommending radiation every day for six weeks. Please someone, tell me what she can do...What do you suggest? I was doing research on the internet and came acroos this site. I read some of your posts and it brought tears to my eyes. If I can do anything for any of you , please let me know. You all have inspired me that I can get through this. Your strength is admired by me. I am so sad and want to suggest to my mom what could be done to cause her the most success and less discomfort. Has anyone ever tried hyperthermia? I would love to hear your suggestions and God Bless you all

Stephany

Hi Stephany,
and welcome to the site. I don't think any of us could recommend a treatment plan but some here had have their jawbones rebuilt by taking a bone from their leg and have had dental implants as well.

With a recurrence, radiation is a must. Six weeks is pretty much the standard course.

Others on the site have had recurrences and have fought and won the battle so don't give up hope. I am sure that once they see your post they will be responding to you.

Discomfort is a given with any kind of treatment in the oral cavity but the effects can be effectively managed with pain meds. It isn't really the issue anyway - this is a fight for life.

You may wish to get a second opinion from a comprehensive cancer center if you are not already in one.

I will keep you and your mother in my prayers.

Gary,

Thank you so much for responding. I really do appreciate it! She had her left side of her jaw removed a year ago and they put her leg bone in and her body rejected the plate. They had to take it out. IT was very painful and awful for her that I would hate to see her go through the surgery again for nothing. Have you heard anything about the clinical trials or chemotherapy for this kind of cancer? I am researching so much that I am starting to get confused with everything. I think the best information I can get is from other people that I have had this or similar cancer. Thank you so much.
Stephany

Hi, Over 3 years ago I had floor of my mouth down removed plus 3 inches or more of my jaw bone. I had a femur flap that failed. They then gave me a titanium jaw bone.My Doctors call it the bar.They rebuilt my face with my shoulder and lining of mouth from wrist.It has been a long haul but I eat most everything, I talk, a lot. And most of all I am alive!I have one more plastic surgery to go, mouth stretcher and then teeth.The one thing I have learned is that even though we all worry about disfigurement, they can fix it! Cancer is the enemy, get rid of that then they can fix you up. If you had seen me 3 years ago, or even a year ago you would be suprised how I look now.I do not want to give you advice, just want you to know if jaw removed it can be replaced and plastic work does wonders. All this is covered by insurance because of reason for the fix up.Good luck to your Mom.

Gnelson.

Thank you so much for your post. I am so happy to hear that you are cancer free. My mother has a story similar to yours. She had the femur bone in her jaw and her body rejected the metal plate. Thank you so much for responding to me. It has given me hope that this will all work out for my mom. I am so happy to hear that you can eat and that you have been cancer free for 3 years. I am going to pass all these messages onto my mother for support. Thank you
Stephany

Hi Stephany,

Your original question was with regard to what treatments we would recommend. For the most part we aren't in a position to make such recommendatons. The thing we can do is let you know our observations (first hand) and suggest things you might ask her doctors. I think radiation is the most sure way of getting the lowest recurrence rate possible. It also causes very significant side effects and recovery is a challenge. That said, my observation is that I have not heard ANYONE who is surviving this cancer, say they regret their treatments.

A few folks have expressed such regrets when the outcome was that the cancer won the battle. The problem for all of us is how to decide. I'd say don't stop until you know you have won!

As for hypothermic treatments, I have read some about that, I do not believe it has been used in the USA (I may be wrong). I am suspicious about it because you wouldn't find this cancer occuring in folks from Northern Minnesota.

Mark,

Thank you for your reply. I did not know hyperthermia was a rather new treatment, not probably available here in the US. I just feel so overwhelmed trying to learn everything at once. Thank you for your suggestions. I am asking survivors to learn from their experiences. I know it is not a substitute for medical opinion but I do know that you can learn a whole lot more from people who have gone through it, than from a textbook. My mom is going to start radiation and has a surgery scheduled for next month. Can I please ask what to expect from the side effects?? DO you know what she could expect and me, as a family member so I can be prepared? Thanks again and I am so happy to hear that you are surviving this cancer.

God Bless you
Stephany

Hi Stephany, I have to step away from the computer for a while so I can't give you the full list of things she and your family can expect. Take a few moments and use the search tool here and you will find numerous conversations about the effects and helpful hints for all of you. Most notably she will likely loose the ability to produce salivia. That is probably the worst long term problem. If she can get IMRT type treatments she will probably have less long term problems. I also suggest she have a Thyroid test BEFORE starting treatments. This is to have a record of the TSH levels to use as a target if she develops Thyroid problems later. She should start eating high quality food now to build up reserves. She can expect to loose a significant amount of body weight. (20 to 40 pounds or more) The treatments themselves are painless. As the second week or so goes by she will likely start to have mouth and throat sores develop. This begins the worst part of the treatments. I don't want to scare you so I won't go on and on. SHE CAN do this many of us did.

The hypothermia treatments are not "new" they are just one of the many that haven't proven effective. If my memory serves me correct it was tried in Germany and in fact they may still be using it in Europe. You will find there are many many cancer treatment "ideas" out there that don't prove to work when put to controlled testing.

You haven't said if your mom has Squamous Cell Carcinoma as her oral cancer (more common)or if the Melonoma is her oral cancer. Assuming it is SCC then the most effective treatment seems to be surgery and or radiation with some recieving chemo as a helper with radiation. Chemo by itself is not very effective with SCC.

Take care.

Hello Stephany,

I responded to you with a private email.Let me know if there is anything else I can help with.

Patty

Thank you Mark and Patty...FOr responding to me...I went and had lunch with my mother and told her about this web site and how it has helped me and how she should also come in here. Mark, I passed on your information to her and she found it very helpful and she sais thank you. Mark, will she need to have someone with her for radiation or can she do this alone?

Patty, thank you also so much. I am praying for Joe and am sorry to hear about his condition. I responded to you via email also. If anyone has any links or web sites to refer me to, please email me. Thank you all so much. I just am so confused why the doctor would do the first surgery a year ago and say the margins were clear and not suggest radiation. And then a year later, its back. Why didnt the doctor suggest radiation a year ago after her first surgery??? What are your thoughts on that everyone?
Thanks
Stephany

Hi Stephany,
I never once drove myself to radiation treatment. I know that some have and even gone after work (or even held a job while going through this!). Not me - towards the end I slept both ways on the trip. It would take all morning just to work up to leaving the house. And I had IMRT the "kinder, gentler" radiation. We had a 60 mile drive to UCSF every day. After the first couple of weeks I was too sick, too medicated and weak to even think about driving myself. My wife was my primary driver and I had several other relief drivers. Once a week they would take alignment xrays and I would also see the doctor (radiation oncologist) and usually the nutritionist also, usually not on the same day. They also took a CT scan in mid process to fine tune the software programming and check the progress. We always had late morning or early afternoon appointments which mitigated the commute issues. They were terrific about trying to accomodate our schedule.

Why they didn't suggest radiation for your mother initially also is anybody's guess. There are some here who have had recurrences who were treated by surgery alone and suspect that lack of "prophylactic" radiation was the cause. Second guessing (and I MEAN guessing) it would be very hard on the graphs and reconstructive surgery to radiate it, so they must have considered the "risk/benefit" at the time, especially if it was a low staging initially.

Radiation was a very difficult and demanding treatment protocol and the decision to utilize it is a very difficult one. Radiation is one of those interesting paradoxes in medicine. Radiation can cause cancer yet it is also used to treat cancer.

Essentially the doctors revealed to me their entire bag of tricks and it was up to me to choose the appropriate treatment plan (with their input of course). I opted to go with radiation and chemo only. I could have had a 14 hour surgery also. Some have said that the 1-2-3 punch is the best and most efficacious - slash, burn & poison. The science is not quite there yet with a definitive answer. I will second guess that decision forever (especially if I have a recurrence). One would think that if a cancer is well differentiated and focally invasive (and a low staging) that surgery alone would be efficacious. (I'm still second guessing how I got the damned thing to begin with!) It was a year ago this coming Wednesday that I had my first radiation treatment and I still have lingering side effects. It took a good 6-9 months post treatment to get back to 90% of what I used to be.

It goes without saying that, like anything else, your chances for survival are improved when going to a facility that specializes in this kind of treatment and patient management. I deliberately sought out an NCCN comprehensive cancer center for treatment (there is something like 17 of these in the US) where they have an entire hospital wing (or even the entire hospital like MD Anderson or Memorial Sloan Kettering) that is dedicated to cancer treatment and follows the latest state of the art treatment protocols (most also offer "clinical trials" with the latest experimental treatment protocols). They network and share information.

In fighting this disease, treatment and diagnosis mistakes are never good options. I have personally known people who chose lesser facilities for "convenience" and it has cost them their life. Like many other things in life, one has to be "willing to go to any lengths" in the battle.

Statistically, we all fear recurrence - it's really a 50-50 chance in the late stages. People who have "done everything right" have had recurrences. Only God knows the real answers to this...

Gary,

Wow...What a reply from you. Thank you so much for taking the time to tell me all of that. It was such helpful information. Everyone who has responded to me as been such a help. How are you doing? Are you cancer free now, I hope? I am sorry to hear about how you had such a difficult time with treatment. I just wish noone had to go through the torment of this awful disease. I am hopeful that one day we will have a cure.

Regarding my mom, I will prepare to have drivers for her. My father will help and my sister. But, my sister and I both work, but we will do our best to help. I am just scared because I dont know what to expect from the side effects of radiation. The surgery is going to bad enough. So you opted out of the surgery treatment? Right? And just did the radiation or chemo also? Did that take away all the cancer? Did it hopefully not recur?

I know it is best that my mom do everything she can but removing her entire jaw is so invasive. I went through this last year with her and I am scared that she suffers or doesnt make it through it for nothing and have it spread again. She is 63 and I am worried.

You have given be very helpful information. Thanks so much Gary and I will put you in my thoughts and prayers that you conquer this disease completely.
Stephany

Hi Stephany,
It appears as if I have had a "complete response" to treatment. The tumor melted into oblivion at about the third week into radiation. It was rough going but comparatively speaking, I had an easier time than many actually. The rad techs always commented how well I tolerated everything. Like everyone here, I am always waiting for the shoe to drop but so far so good. My radiation oncologist told me that she felt I had an 80%+ chance of survival based on her personal experience and the type of tumor and many other variables. I was blessed to have one of the best doctors in the world. UCSF was one of the early pioneers of IMRT (since 1995 at UCSF) and my radiation oncologist is also a professor of clinical radiology. Many radiology student doctors have and continue to peer down my throat.

We will help you to understand the process as it unfolds. My wife found a book, "Living Well With Cancer" by Katen Moore and Libby Schmais and it was great for demystifying everything. You actually have the worst job. It is truly far more difficult to be a caregiver than a patient. Watching a loved one suffer through this is disconcerting at best. At one low point in my treatment my wife thought I was going to "check out". It never ceases to amaze me just how well designed and resilient the human body is. I got to wear the caregiver hat when my Dad was dying of non Hodgkins lymphoma so I have an idea what you are going through. Fear of the unknown is the worst. Continue to educate yourself (as you are doing), ask lots of questions, be there for exams and take notes or tape record what the doctor says. Be an advocate for your Mom. You'll never regret it. This experience will teach you to value life and how precious it is. Keep as positive an attitude as you can - your mother will draw from this reservoir of strength from time to time. Ben Franklin once stated "That which hurts, instructs".

By the way, the American Cancer Society has drivers to take her to and from treatment. They also reimburse for mileage - call your local chapter. Caution: DO NOT let anyone near your mother who has a cold or flu (like sick drivers or children).

If your mother is on SDI then she automatically qualifies for "In Home Supportive Services" through the State of California. They pay $10.00/hr. for caregivers See: http://www.dss.cahwnet.gov/cdssweb/In-HomeSup_173.htm for more info

Gary,

I had to work today, that is why it has taken me a while to get back to you. Thank you so much for the advice. I am happy to hear that you are going to get through this. I am sorry to hear about your dad. It is so great that I have you to talk with. You really have so much information in addition to your experiences. You have really helped me.

I have passed all your information on to my mother but what is IMRT treatment? I apologize but I am unfamiliar with that term. Is that a kind of radiation?

Gary, you are a wonderful person and I thank you so much for being here for me.

Stephany

Mark, Gary,and Patty,

My mom has SCC in her mouth and had melonama on her arm. It is not melanoma in her mouth.

The doctors said she got gum cancer from gum infection. I have called her doctor and left a message and am waiting for him to return my call. I took your advice and wrote out my questions. Now, I am hopeful to get some answers soon. Thanks again.

Stephany

Hi Stephany,
we have even more in common - my mother had melanoma on her left upper arm. They took a chunk of flesh that I swear looked just like a sharkbite. She also had breast cancer and had a radical mastectomey. I was very young when all that happened. She passed away suddenly of a myocardial infarction when she was 68. My dad had a bad heart and died of lymphoma - go figure!

IMRT stands for Intensity Modulated Radiation Therapy. It differs from XRT (convetional radiation) in that the actual tumor shape is mapped out in 3D on a computer and a treatment plan is developed in software that attacks just the tumor, sparing as much healthy tissue as possible. XRT on the other hand is more of a shotgun approach. Not all people are candidates for IMRT. The tumor has to be well differentiated (or well defined) for the best outcome. see the site below for a more detailed explanation. http://www.nomos.com/content/2_1_imrtbasics.php?S=2&SS=1
It was originally developed for prostate cancer.

Stephany,

My sister and I are going through a similar situation with our mother. She just had her second surgery for SCC of the mouth and started radiation and chemo today. I live in Huntington Beach and my sister lives in Augora Hills. If we can do anything to help you through this please feel free to contact us. We are sooo frightened going through this battle and would love to hear from you. Statistics and everything can be so scary.

Danielle

Gary,

Wow, I cant believe that story about your parents. That is amazing. How weird is that. I guess you never know what the future holds. It must be so hard losing both of your parents. My father has a bad heart also, but overall in good health. My mother is the one who has two different primary cancers.

Thank you so much for the helpful information. It is now 1 am my time and I have to wake up early to go to my office. But, I will check it out sometime tomorrow.

Gary, you are such a doll for helping me and everyone out in here. God Bless You

Danielle. I sent you a private email. We are neighbors.

Stephany

Hi Stephanie,
My name is Minnie and I also am recovering from cancer of the jaw, stage 4. I had surgery nine months ago to remove most of my lower, left jaw and it was replaced with a bone from my leg. So far so good and my jaw looks awesome. There is still some swelling and puffiness, but the shape of my face is almost exactly how it was. I had radiation also and my check ups show me to be cancer free 6 months after radiation.
When I read your post, my first thought was to wonder if your moms cancer came back or if it was always still there after the surgery as she didn't have radiation. Brian has stated on here many times that alot of times its not a recurrence of the cancer, but the same cancer that didn't get radiation after surgery. In a way I kind of hope that is the case with your mom and that after she has this surgery and radiation that she will be fine.
I have three adult daughters that worry like you do, reading your posts made me feel so sad that they have to go through all these feelings. This whole experience has brought us very close, and we were close to begin with. Cancer adds a depth to a relationship that usually doesn't happen in the "normal" course of life. Tell your mother every day that you love her and just set your mind to the fact that she will come through this and be here for many more years to come. My 23 year old and I were talking about my surgery the other day and she made the comment that through all of this she has never been worried about me dying, that she has always known in her heart that I would be ok. I believe her.
Take care,
Minnie

Hello Minnie,

Thank you for your post. Im off to work now and I will write more later. I wanted to respond to your post. First, I am so glad you have been cancer free for 6 months. THat is great. My twin and I are close to my mom but we worry about her. The first surgery they removed one side of her jaw and her body rejected the metal plate. They did put the bone in her jaw also, but it didnt take for her. Now, the cancer is next to where she had the surgery before, so I dont know whether to call it recurrent? This is all new to me. I thought it is recurrent if it comes back. I guess I am wrong. The doctor had told her before after the first surgery a year ago that the margins were free. Then, a year later, it is in the area next to where she had the surgery before.

They want to remove the rest of her lower teetha nd her jaw bone. My father and us girls are scared for the jaw removal and so is she. I believe she is not going to have her jaw removed but only her gums and rest of her lower teeth. She told me she didnt think she could survive the jaw removal surgery. I dont want to see her suffer. It tears me up inside. I am so worried about her. ANd it is so sweet that you worry about your daughters. My mom is doing the same thing. She is worried about us taking all of this when she should just be worried about herself. She cries all day and I just dont know what to say to her to make her feel better. I do tell her she will be ok but I think in her heart she is very scared.

So is it recurrent or the same cancer? I guess I incorrectly assumed it was recurrent.

Thanks Minnie and I will say prayers for you and your family. Thanks for your support and kind words.
God Bless
Stephany

Stephany-

I sent you a private email, but I'm not sure it went through (computer glitch). Let me know. I can send it again.

As a fellow caregiver I know EXACTLY what YOU are going through. I live close to you and am willing to get together if you need to vent.


Lorie

Hi Stephany,
I can't answer if it's recurrent cancer or not, I'm not knowledgable enough about it all. I just remember Brian stating that he felt many recurances were NOT a new cancer but left over cancer that radiation didn't take care of. My doctor told me that even though they had large, clean margins from the surgery they were still going to do radiation to "mop and clean" up any microscopic cancer cells that might have been missed. His explanation made sense to me. When I had a CAT scan after diagnosis to check for the spread of the cancer to my lungs, etc. my scans showed nothing. Yet, the removal of the lymphnodes showed one lymphode lying against the tumor had microscopic cancer in it.
My heart breaks to hear you say that your mom cries every day, I can only imagine what she is going through and what you are going through. I can FEEL my kids watching me sometimes, not as often as a few months ago, but it still happens. And I KNOW they are having a fearful moment, wondering what they will do if my cancer comes back. We patients have the easy job in my opinion. Give your mom time to come to grips with this new diagnosis and I bet she will find a strength to fight this. I can tell you this, in her shoes I would have the surgery to remove the rest of my jaw. I know it sounds scary but it could very well save her life. She still has radiation to fight this with also, I would make sure she has all the information and knowledge then ask her about the surgery again. Just my suggestion, I don't want to over step my boundries here with advice, I'm new at this!
I would love to have you talk to my oldest daughter. How old are you?
Take care,
Minnie

Hello Lori,

I did not get your email. :-( Please send me an email hat I can you use to email you. My email is [email protected] or you can email me an address that I can send it to. My server could be blocking you, I dont know. I would love to talk with you. That would be great. I think we could help one another and i am glad we are close to one another.

Stephany

Minnie,

I am 39 ( as of a week ago LOL), I have a twin sister also. I would love to speak with your daughter and you sometime. I think we could help one another. My email is [email protected]

THanks
Stephany

Stephany-

Ok, I sent you a private email to the address you gave. Wow...we are the same age!

Let your mom know that we are all sending healing thoughts and prayers her way. From the caregivers point of view I think sometimes we just need to sit and hold our loved one's hand while they (we) cry. I heard one time that like a plant, we only grow when watered. This is definitely a "growing" time. Thank God for all the wonderful SURVIVORS on this website!

Lorie

Hi Stephany, and All,

I am also 39 years old, and my 59 year old father had his 20th out of 30 scheduled IMRT treatments
He has T2 SCC in his cheek from lip to ear on the
right side, doctor felt cancer in two lymph
nodes on the same side and they are being hit as well.

The first week of radiation, he began
taking Tylenol with codeine for mouth pain. It helps him a lot.

The second week of radiation, he started a 25 mg. morphine patch for mouth pain.

The third week of radiation he developed a yeast infection in his mouth. Very painful. Doctor told him instead of taking the morphine patch off and replacing it on the third day, to keep it on and add a new one. My dad got very sick, and this lasted until he decided one morphine patch was enough. He hast taken two rounds of diflucan for the infection, which seems to want to persist, but is much better. He is eating yogurt daily and we got some acidophilus from the pharmacy and he sprinkles that on the yogurt. He holds this in his mouth and it is comforting. The rinse that is mandatory for him, 2 parts baking soda, to 1 part salt, to 4 parts water rinses help alot. He does this all day, doctor says you can't do it too much. It promotes healing, and helps reduce the infection, and clears food and drink from his mouth which contributes to the yeast infection.

The fourth week of radiation, he is getting massive amounts of phlem he gets sick on. But today, his 20th treatment, he feels good! He's lost 13# total, his doctor doesn't like this, but my dad is eating solid food, even though he has no taste buds, and tries the mind over matter approach when he can. His treatment is at Cleveland Clinic, 60 miles from home, his wife and brother do the driving. I go with them on Wednesdays to see the doctor, I can't leave work much more than that yet. He is likely to receive brachy therapy when IMRT is over. I cannot believe the difference in the tumor today from 2 weeks ago, it truly looks like precision work, and it looks like the healing is beginning. For this I am grateful! I have been so worried! He says the only thing he can't handle is the pain from the yeast infection, so you might want to keep a close eye out for this. I will be thinking of you and your mom and wondering how it's going, so please keep updating!

I'm glad I found OCF, thank you!

Lorie,

What a doll you are. Thanks for the post. How are you doing? I did not get your private email. Please try again to [email protected] I feel bad that I am not receiving it because I would like to email you back. Please try again. Thanks.

Stephany

Hello Dell,

Thanks so much for the helpful information. At least I have an idea as to what to watch out for. How is your father doing? I am so glad he is starting to heal.

What can I tell my mother to do to prevent a yeast infection. I am scared for my mom. The unknown is always scary. Sometimes, I find my mind thinking the worst and I have to stop myself and think positively. But, it is hard as you know when you are dealing with the "C" word. ANd I ask, Why my mom? But, then again, I am sure everyone asks that questions. The perplexing thing for me is that my mom doesnt smoke or drink and got this weird gum cancer that spread to her jaw. Life is unpredictable at times.

Wow! What a strong man your father is. Please tell him that I am praying for him and for you and your family.

God Bless you and your family.

Stephany

TO EVERYONE, MY FRIENDS,

I cant thank everyone that has posted and emailed me enough for the kind and supportive words. My mom is scheduled for Surgery on in three weeks and then will start 6 weeks of radiation after the surgery. I am scared. They want to remove the rest of her teeth and gums and replace her gums with tissue from her hip.

I was very upset and depressed when I first got the news last week and then I found this web site. It has given me so much hope and support that I feel stronger each day. It has meant so much to me to know that such kind people in this world exist.

To everyone, I wish you health and happiness for you and your families. I am hopeful that one day there will be a cure for cancer and that people wont have to suffer from this anymore.

God Bless
Stephany

Lori,

Is your email didier........Please let me know. Then I did receive yoru email and i replied

Lorie,

I just got your email. I will respond privately.THanks
Stephany

Sorry Dizier. I figured out who Lori was and who you were and I emailed you both. Sorry for the confusion and thanks for the posts. Please check your email.

God Bless
Stephany

Hi Stephany,
I'm glad your Mom has her treatment plan now,
and I will be thinking of you both during this scary time, hearing the "C" word and the treatment plan. It is such a shock to get the diagnosis, and the treatment.

Thank you for your warm response, it really helps to share this experience with others who are going through it now too.

Your mom can do the 2 parts baking soda, to 1 part salt to 4 parts water rinses now to help prevent yeast infection. In my dads case, I think brushing got so painful that he may have skipped sometimes, and the food particles and drinks left in the mouth may have contributed to the yeast infection. He's now using the smallest softest toothbrush we can find. Also during the first couple of weeks, his wife was making him the high protein smoothie shakes with lots of fresh/frozen fruit and the sugar helps the yeast grow. Another mode of prevention is yogurt with live cultures, and you can "kick it up a notch" with acidophulus, eaten daily. Our pharmacist advised to hold this in the mouth to prevent yeast and ease burning and soreness. Using a humidifier is helping my dad with the dry mouth that comes with radiation.

I'm so glad we also share faith, that is what is really getting me through this. I'll be praying for you and your mom Stephany, I wish nobody had to ever go through this, but I'm glad there's a way we can help each other.

HI Dell,
I am so glad to see someone else who posts information about yeast infections!

May I ask for you to check the formula for the rinse? It seems to me the mix you have mentioned would end up as a salty paste not a rinse.

My oncologist had me mixing something like 1 tsp salt + 1 tsp. soda and a glass of water but I can't find the exact mix.

Thanks

Regarding the rinse mix, I think Mark is correct. I used to mix that in sport bottles I kept in the fridge, so I could just squirt that into my sore mouth, bypassing the sore lips. Great stuff, cures many ills. At one point it was suggested I add a little hydrogen peroxide. Whatever benefit that might have had, the taste was terrible enough that I discontinued that PDQ.

The mixture I suggested would be pasty wouldn't it?! Gosh; I wonder where my mind is these days!
My dad was told 1/4 tsp soda to 1/8 teaspoon salt to 4 oz. of water.

Thanks for spotting the problem with the recipe Mark, sounds more like a solution for bee stings!
Lol!

I've borrowed the following info from this link, I hope it's ok to post it here.
http://www.nci.nih.gov/cancerinfo/pdq/supportivecare/oralcomplications/patient/

Cleansing agents can include "salt and soda" (1/2 tsp. salt and 2 Tbs. of sodium bicarbonate in 32 oz. of warm water), normal saline, sterile water, or sodium bicarbonate (1 tsp. in 8 oz of water). Hydrogen peroxide diluted in equal amounts of water or weak salt water can be used when crusting is present. (This should be used for 1 or 2 days only because it will keep mucositis from healing.)

A salt and baking soda solution neutralizes acids and dissolves thick saliva.

Thank You Deb!

That is good information and I'll keep the other formula for the bee stings this summer (if we ever get summer...global warming my a--! -30F two mornings in a row and the kids home 4 out of 5 days this week because of weather!)

Hello Everyone,

Thanks for the posts regarding the drink mix. I have printed out your suggestions. My mom doesnt start radiation until March or so. But, I am going to use all this information. Thanks so much.

I have a question though to everyone. My mom is not going to do the surgery to remove the other half (whats left of her jaw) jaw bone. She is going to do the surgery to remove the tumor and replace her gum tissue with tissue from her hip and then will start radiation. Has anyone make this option?

Thanks again and God Bless you All!
Stephany

Stephany, in a partial answer to your question, I had a tumor removed and the surrounding tissue with it, then a graft was taken from my arm, along with a vein, and someone with very small hands stitched that into my mouth to cover the resulting hole. I am amazed that arm skin turned into gum skin so completely that I have trouble identifying exactly where the graft was -- and it was pretty large. This was done about five weeks prior to the commencement of rad and chemo. And I am here to tell about it, so you know it worked just peachy keen! It is my understanding that any surgery involving grafts takes a very long time. I went in before daylight, and when I awoke in recovery, it was night.

Joanna,

Thank you for your post. I have taken a while to get back to everyone because I have been so busy. Sorry about that.

I am so happy that you have healed. My moms surgery is in three weeks and I am very nervous. She already did this once. They took bone from her leg and made a jaw and took tissue before for her gum. They are going to remove the tumor and then take tissue from her hip and make gums. Then, she has to do 6 weeks of radiation. I am more scared of the radiation because She has never done that before and the sweet supportive people in this web site have been telling me what to expect. The side effects seem very extreme.

Joanna, I hope you are feeling well now and thanks for your support. God Bless YOU!!!!!!!!!!

Stephany