Hi. I am mrsM and my Mother-in-law has Tongue Cancer (on the left side of her tongue) and it has caused her tongue to bleed and swell at times during her treatment. She is quite secretive to her cancer (not even admitting/telling her son/I for nearly 4 years). I am seeking information to help her or get some advice.

She is in her mid 70s, 85 lbs or so (always been somewhat petite). She was a drinker of a south american tea drink (mate) for 55+ years (which we think caused the tongue cancer but not confirmed, just speculation although its on the cancer institute's website that it has a carcinogenic in the tea - nice huh?). She's always been in shape and healthy, doing most things naturally (no drugs).

I was wondering is there anyone out there with tongue cancer that had a positive result with a natural remedy and what was it? She did do chemo/radiation (not sure if it was real chemo) and advil for treatment along with rinsing salt in the mouth and somehow 3+ years ago went into remission.

Approx 5-7 months ago the tongue cancer came back and I think its bad. I saw it and it's partially white/red on the left side of her tongue from back to front. It looks painful and the smell is horrible because she can't really eat much. Recently the loss of blood from her tongue left her with 4 pints of blood in her body, which nearly killed her. A blood transfusion saved her life, although her legs are so swollen from fluid retention. We are waiting on tests and have pretty much found out it has spread to her lymph nodes.

Any advice or your story would greatly help. She has continued to not want any type of pain medication in her system and she is obviously suffering badly. Her face has become disfigured with the tongue cancer causing it to look really different. Her body is frail and boney and her spirits seem to be okay. Her mind seems to have been altered and the memory is fading. Thank you for the vent. It's really sad to see her suffering. Thanks!

Sadly by your description it sounds like she may be to advanced to be helped other than pain meds to keep her somewhat comfortable until she passes. IMO she needs to be in the hands of Hospice. Does she have a Health Care POA and/or an Advanced Health Care Directive?

Thanks for the info David. I too think she needs Hospice or Dibility Hospice, however she's a stubborn woman not accepting the end is near, which is another sad thing alone. I have to ask her daughter if she has a POA or AHCD signed as it's important while her mind is still in tact.

She can only communicate with us via a writing pad and that is hard to read. She can walk around and just looks weak and fragile.

We are in California and I was wondering if anyone knows of any assistance besides IHSS (in home support services), and hospice that is available for low income.

MrsM, welcome to OCF. Im sorry that you are going thru this with your mother in law. Her being secretive about her health is definetly not helping her situation. It makes it so much harder to help her. Not sure if you can answer these questions, but it would help us to help you....

How do you know by looking in your mother in law's mouth that she has cancer?
Why do you think that there has been a spread to her lymph nodes?
Has she been hospitalized?
What are the tests that you are waiting for results on?
Has she had a biopsy?
Does she have a feeding tube?
Is she being treated at a cancer center?
Do you know for certain if she has had radiation already?

Radiation treatments are difficult to get thru. She would have needed someone to help her. After my second week of radiation, I no longer drove. Most of us have required strong pain medications.

Nobody has been cured of oral cancer by any natural remedies. The only known cures are radiation with or without chemo and/or surgery. Swollen legs are not a side effect of oral cancer.

If she has not yet gone to a cancer center please take her to one. Give her the best shot at curing this and get her there right away. I hope she will let you help her. Now is not the time to be stubborn.



I just saw David responded to your post. I am hoping that there is still a chance. Im sorry if it is too advanced and she needs hospice. I still would suggest that she is seen at a cancer center for an evaluation.

Sorry but I dont know what is available in CA. Maybe asking at the place she has gone for treatment already.

Thanks Christine for your reply!

I too agree not being honest about the illness is not helping her - believe me! I will answer your questions above best as possible.


How do you know by looking in your mother in law's mouth that she has cancer?
I saw her end of October and she can't really open her mouth too much because her tongue is so swollen and the smell is bad. She couldn't eat much at that point and I saw the side of her tongue was white with red. She was showing me when we got interupted, which shocked me. She had a biopsy in June (I think that was the month) and results were pending end of June. She finally told us her tongue cancer came back. She told us in August and stopped treatment in Sept/Oct from what SIL said. She confirmed her Mom had tongue cancer.

Why do you think that there has been a spread to her lymph nodes?
Her daughter said she thought it spread. The MIL/SIL NEVER claim anything like that, they don't even like to mention the word CANCER, afraid it might make them worse - negative thinking to them, even though your inquiring. I just hope SIL is wrong.

Has she been hospitalized?
She was just hospitalized because she almost bled to death. She lost about 8/9 pints of blood, leaving her with 4 pints (you have 12-13 pints). She had a transfusion with 4 bags of blood over 8 hours and it may have saved her life. Proabably from loss of blood she became swollen so badly. Still in the hospital 4/5 days later.

What are the tests that you are waiting for results on?
She is having some labs and probably a scan to see if the cancer spread, not sure how long it takes in a hospital setting. Not sure on all of her testing as she is so secretive about anything these days. I am sure the fear is setting in, although she let me tell the nurse not to let a PA in her room because she wasn't comfy, so she trusted me. She knows I will protect her.

Has she had a biopsy?
I am guess since my SIL said it was cancer of her tongue, and she didn't know the stage or grade of it or maybe she didn't want to say, not sure, some people tune that stuff out when they hear cancer. She had surgery to remove the tumor on her tongue 4 say years ago (give or take) and no chemo was needed. She was in remission until a few months ago. This is her 2nd round of treatment, well she quit it 2 months or so ago since it was more than she can handle. I would suspect cancer in this case if left untreated could spead quickly, not sure.

Does she have a feeding tube? No
Is she being treated at a cancer center?
They just found one for her however she was put in the hospital on Christmas due to the blood loss. I am not sure on options at this point. I hope this is not the end for her and hope for an option. I told my SIL let's take her to the cancer center together I can help her and she never got back to me, so stubborn I tell you!

Do you know for certain if she has had radiation already?
Yes she had it and it nearly killed her. She did it a dozen times of so at a holistic place along wtith some other treatment (hydrotherapy possibly). She would have treatment and then come home and be sick and sleep for a few days. She said she only felt better on the 3/4th day after treatment and told her MD she didn't want it anymore, it was too much for her to handle.

I am a cancer advocate and a strong voice to get her help. Her son *my spouse* will not ask questions about it (because he doesn't want to make Mom mad) and his sister is nearly the same way - quiet and MIL can't hardly speak, she writes everything down. It just makes me mad she is stubborn over any kind of treatment at this point, so maybe she knows something more than we do. I inquire because I care too damn much. I do appreciate your input too!

My Dad died in 94 of liver cancer and MIL has that same look as my father, sick, pale and skinny (def not feeling strong) and weak. I just hope in the time she may have left she doesn't suffer because it's horrible. I speak up for anyone who needs the help, voice or friend, that's just in my blood.

Thank you so much for taking the time to answer the questions. You sure have your work cut out for you! Sounds like for every attempt you make to try to get her help it gets met with opposition. Thats really so sad. I am so sorry for what you are going thru with your MIL.

From what you wrote about her radiation treatments, it does not sound like the same radiation treatments most oral cancer patients have gone thru. Most of us were treated every day Mon-Fri. We did not get the luxury of sleeping for a few days after a treatment. This might have been one of your MILs natural remedies???? I dont know anything about hydrotherapy.

I really hope that your MIL will allow you to take her to a cancer center to be evaluated. She will have to tell them her history so they can help her. Im afraid if she doesnt get seen soon that it may become too late for her to get help.

Oral cancer doesnt respond to chemo alone. Chemo is only given by itself for pallitive care. Most people who have chemo are given it along with radiation, it helps the radiation kill the cancer.

I hope that somehow you will be able to talk some sense into your MIL. Try to help her to understand that you will be her voice. She needs help and by refusing it, things will only get worse. When untreated this is a very painful and difficult path to take. Please do your best to get her to a cancer center and thats all you can do.

Best wishes!

There is a "natural remedy" for oral cancer - death.

Only legitimate, scientifically proven medical treatment, has been proven to be efficacious for the treatment and/or mitigation of cancer (in all of its forms). From your explanation provided to Christine, it sounds like she has not had a valid treatment plan or failed to complete one.

Incidentally we have had patients here , in their 80's "handle" the treatment, which is very brutal at any age.

Hospice care is free in most areas of California and is also covered by Medicare/Medical - call your local hospital social services for referals or Google hospice care in your area. Having personal experience with hospice twice I cannot sing their praises loudly enough. They manage the pain, monitor the patient, train the caregivers, provide aids, bathing, respite care, etc. and provide for the highest quality of life possible for end stage patients

MrsM, not really anything I can add to all this great advice. But I wanted you to know that my thoughts are with you and your mother-in-law, as I'm sure are those of everyone here.
david2

Thank you Christine, Gary and David for your input and kind words.

I did finally get some answers last night about the situation. Apparently she couldn't handle the radiation (not chemo - but might be same thing, not sure) so she only did one then went back 2-3 weeks later (which doesn't do anything). This was two+ months ago. MILs beliefs are a bit wacked (in my opinion and probably every cancer patient too) and this so-called natural remedy is her killing herself in my eyes. She gave up because she thinks radiation damages herself and for some it does speed up cancer (or its just too fast to slow down).

This is a person who was always thought our big screen TV would cause radiation to our children and always wanted the TV off when she was here (note she never got her way) so I never thought to myself she would do modern day radiation. I even told my SIL and MIL 3-4 months ago about a radiation pill and ask the MD about and thats when they said, no medication etc and I said your foolish.

At this time I did find out she is stage 4, and there are no options for her. My SIL informed me once I asked how did they determine it (labs, scans what?) and she said I don't know (again here with go with vague information). I told her if they did no tests then I would get a 2nd opinion because maybe there is hope, just maybe.

She must have dibility hospice and we have to get her signed up for In Home Support Services. The great part is that all of this (including posssibly placing her in a home) is covered by Medi-Care, which shocks me. Her kids hate to put her in a home and for now we will get Hospice involved since they think months and who really knows.

It just saddens me for my spouse, this is his Mother and hard to say goodbye. Life is so precious and fragile and I wish she wasn't so damn stubborn and go with modern medicine. Well thanks for listening and I really honestly appreciate it from the bottom of my heart!

Don't know anything about her finances but any/all of her bank accounts should be in joint names or at least switched to POD accounts. Safe deposit box as well. Get a simple will prepared. Prepare a POA, Health Care Directive, etc. Most patients in her state don't last many months with some drifting in and out of mental capacity.

POA = power of attorney (got that!) but what are POD accounts?

Im sorry that you found out such terrible news with all the details. Its very sad, Im sure you are very upset.

I agree with everything David wrote. Get her affairs in order right away. She may not have that long if she was stage IV a few months ago. You mentioned about her facial disfigurment which means the cancer is growing. Oral cancer can move very quickly.

You tried. If she refused to go for another opinion then there isnt anything you can do. It really is a shame that she kept her health so secretive. Radiation isnt a walk in the park, its downright hard but it can also save a life. Anyone who went thru it knows how terrible it is but we all chose to try so we could still be around. Since Ive joined OCF, Ive seen so many good people fight and give it everything they had and cancer still gets the best of them. Its so sad when a person comes along that wont try. If a patient refuses treatment then you cant force it on them.

Im glad you found OCF so we could give you some guidance. Im so sorry that we couldnt help you more. I wish you all the best with what is upcoming.

Thank you once again everyone. I am glad I found OCF too! All of you have been wonderful. My brother had stage 4 Lyrnx cancer and fought it, wanted to give up many times. His life is altered as he can't speak/smell or breath well anymore but the bottom line is he fought and is cancer free.

MIL doesn't have any money. She does have medicare and they are going to get everything covered and trying to get her moved into a home today/tomorrow. They just want her out of the hospital because they can't help her anymore. In California they have an In Home Support Services that helps but sadly it takes WEEKS or a month before it is approved. Her doctor said surgery is not an option and end of life treatment is the best option at this point, Hospice. I already called and signed her up with Hospice and now there are waiting on the doctor to approve/write her order.

As for the Health Care POA I have already informed her daughter do it NOW, no delays along with a health care directive (I think thats the name of it). Her mind is in/out so better to make her last wishes documented immediately. MIL is in complete denial, super sad that she didn't fight, actually pisses me off she HAD a chance to beat this even though it came back. She originally was diagnosed in 03 or 04 and pretty much kept it a secret until 07 when I found out, then it was hidden all the way and avoided discussion. Stubborn fool.

She didn't even put on a good fight to save her own life for her children and grandchildren and won't even get to meet her new grandson (1st boy in the family for a long long time) who is arriving in May. I hope to get some pictures of her with my children so they can look back and remember her.

Thanks guys and I will keep you posted.

If you have a modern flat panel (plamsa or LCD/LED) there is no radiation. If you have an older style TV with a CRT in it you won't be at risk because the 1" thick front glass has lead in it. The x-xays are generated in the high voltage power supplies. The gov. has had radiation leakage from monitors and TV's tightly regulated for many years. Ionizing radiation typically doesn't cause SCC, more than likely it would be adenocarcinoma, if it did cause cancer. There is no radiation "pill" but their is a form of radiation called brachytherapy which uses radioactive seeds implanted directly into the tumor. There is another form of radiation therapy called PBT or Proton Beam Therapy. If you are located in So Cal., Loma Kinda offers it. It is the most advanced treatment available, has perfromed well for head & neck and causes zero tissue damage.

See: http://www.llu.edu/central/info/legacy/chapter5.page

To be sure radiation therapy can cause cancer and also some collateral damage, but without it I wouldn't be writing this to you now, 8 years after the fact.

Chemo is simplay an adjunct to the radiation and will not cure H&N cancer by itself. So surgery and/or radiation are the only chances of a cure at this point in time.

Stage IV is not an automatic death sentence, we have a fair amount of advanced stage survivors here. Conversely we have seen early stage patients die so there are no guarantees.

The purpose of IHSS is to provide services that a person can't do for themsleves such as shopping, laundry, light housekeeping, rides to the doctor, etc. They are not technically caregivers. Family members may be reimbursed at an hourly rate, not to exceed ??? for being that person. So you or your spouse, or any family member or close friend can perform that function.

So sorry to read your posts. I wil keep your famil in my thoughts and prayers. There is really nothing to add to what these great people have said.

Thanks again! Actually Gary the chemo/radiation pill is relativly new technology. My brother took it as a trial two years ago. I believe its just hitting the market now.

As for her cause of tongue cancer we are pretty sure it was from a south american drink called Yerba Mate, it's listed on the Cancer Institutes website that it's the 4th cause of tongue cancer, pretty scary (when consumed in large amounts. Figure 50+ years drinking it like coffee) and it has a carcinogenic in it. Just creates a higher risk.

She was placed in a home tonight for the next two weeks to see how she does. I know once you go into a home, usually you do not come out and the temporary remedy is death, sadly.

POD = Payable on Death. The owner of an account can designate a POD person who will become the owner upon their death. The POD person has no rights to the account while the original owner is alive, unlike a joint acct. The benefits upon death are just like a joint account as the new owner has full access to the account and AVOIDS Probate which the threshold in some states is ridiculously low.

If she has real property then a trust is the ONLY way to go unless you want to be in probate for months and give a lot of money from the estate to the lawyers and the court, not to mention "death" taxes - thank you Obama/Nancy. A will is part of the trust along with advanced directives. If she has less than a year to live you will need an additional document besides DNR or what is in the advanced directives. See this site for more info on POLST http://www.ohsu.edu/polst/

The POLST document is very specific about what measures or not to sustain life. It is a physicians order based on thr wishes of the patient.

The only "radiation pill" I could find, bedsides radioactive iodine, used for thyroid cancer treatment), were ones to reduce the effects of radiation in the event of a nuclear attack.

Radiation typically used in cancer treatment is either gamma, such as Cobalt 60, or more typically, ionizing, as from medical linear accelerators (LINAC). Gamma is typically only used in third world countries now. As it's potency diminishes it can cause horrific and permanent skin damage.

They have developed a brachytherapy technique that has 2 forms: one, is they implant the radiactive seeds directly into the tumor then remove them later. The second way is with a seed that can be charged, from a LINAC, then left in place and it simply disintegrates.

http://www.radiologyinfo.org/en/info.cfm?pg=brachy

It's not often used for H&N cancer however.

Thanks, David! I'd not heard of those as an option.

And Gary, since mrsM's mother in law has no money, let alone $5mil there will be no estate taxes to pay.

- Margaret

A trust is not the only way to go with real estate. You can also either do a simple Quick Claim Deed or again put the property in Joint names with the Right of Survivorship. In each of these there may be "transfer taxes" based upon the properties FMV but since R/E sucks these days there may not be much to pay. If the R/E was put in joint names when purchased there are no additional transfer taxes due. The Quick Claim passes the property immediately so make sure the end is near and the person is totally trustworthy. There may also be gift taxes but in today's tax climate one would have to be a B Gates to worry about that.

I am so sorry to read this, nothing else to say but sorry. It is a horrible disease! My thoughts are with you during this time. Carol

Of course a trust is not the only way to go - only the best. And that's "Quit Claim" not "Quick claim". Maybe you Floridians have better laws because of all of the elderly people retiring there but in California a simple will, will suck a lot of money out of the estate.

I went through a trust with my dad and I am helping my wife go through probate with a simple will from her deceased mother. The difference in this state is like night and day. Just take a gander at the fee schedules for probate. To settle my Dada's trust I merely went to the county seat presented a death certificate and deeded the house to myself (since I was the successor trustee). No taxes, $50 filing fee. No big deal. With my MILS will, the lawyer alone will get at least $50K and the court will get their percentage.

See: http://www.trustandprobatelawgroup....On.html?gclid=CLitsI7gn6YCFQqAgwodSUjYng

Florida Probate is also very expensive and one must do anything to avoid it unless of course you like giving a 3rd of the Estate to lawyers and waiting easily 2 years to settle.

I always refer to a Quit Claim as Quick because it's that's simple. One page and take it to the local courthouse to get it recorded and wham that's it. Every State can be different so always check my Florida advice out in your State first.

Agreed and agreed. The best thing I ever did after my mother died years ago was to finally convince my father to go to an estate planning lawyer. When he moved on years later the living trust was in place and painless to work with. This was all in florida.

d2

You guys are scaring me. My Mom lives in FL and the house is worth about $150,000 is in her name only. When I asked the lawyer about that in 2004 when Dad died, he said it wasn't a problem. When Mom dies, it would cost $75 to go through probate.

Are you telling me this is not true? She is 96. I can't file a quick claim if she dies in her sleep. Are you saying this property should be put in a trust for my sister and I. I can't afford to lose any money on this as come June I will have to support her to the tune of $40,000 or more a year. Was I given the wrong advice?

Thanks,
Eileen

I PM'ed you.

Thanks EVERYONE for your kind words and information! I appreciate all of it. I really do.

Update on MIL, she refuses any/all kinds of treatment, even Hospice (stubborn bird I tell you!).

Yeah MIL owns nothing (but a beat up car) and personal effects that I know of. I think SIL got a POA completed and directive. MIL was in the hospital for a week, and now into a temp. nursing home. They are trying to find her a bed in a assisted living program/home, which could be a week or more. Her kids will have to move her out of her apartment by the end of the month (wasting money on it) and I guess medi-care will pay for the assisted living with her SSA funds she gets monthly.

I believe the tongue cancer has spread to her brain. While in the hospital she complained that her brain was hurting (not like a headache) and wanted some test done (never got the test because by the time they came to do it she refused it). Doctors haven't really said how long she has, my guess is weeks, maybe 3-5 months.

I wished for her grandkids and children that she would have fought this in place of being in denial. It's truly sad, but her life and guess she wants it to be over at 74 years young. Sad to think we are talking about a super active woman, drove herself around mid Nov/Dec and now is facing the end since she wants no 2nd opinion, no Hospice, no testing, no nothing. Her health has gone down really fast!

Thanks for listening. Hope all of you that are suffering, recently diagnosed fight this cancer all the way and WIN! I really do!

I really feel sorry for her caregivers without hospice support. Truly one of the more unusual stories on the forum. We're here for you or anyone involved with her care.

It well could have metastized to the brain.

I too feel sorry, however after I visited her on Saturday she was pretty mobile (which is a good thing). We didn't get to visit much because she was too busy in the bathroom washing her damn dishes, haha. I think Hospice will be in a few weeks or a month. She has to get out of denial first.

I am sure its spread to her neck or brain because she complained about her brain hurting.

Thanks for the support Gary!

I wanted to update those of you with concern and kind words. My MIL lost her battle with Metastatic Tongue Cancer on January 21st 2011. She went rapidly and now is at peace. Thanks again for your kind words, great information and condolances. Thanks again!

Thanks for the update and I am truly sorry for your loss. God Bless

I'm sorry to hear about your loss, MM. But glad she went in peace.
d2

Sorry to hear about your loss and that she was soooo stubborn. I had stage 3 that spread to my lymph node and they did surgery then radiation and i am still going strong about 9.5 months later with no severe issues. she reminds me of my grandma. My grandma didn't tell any of us that she had cancer, but she was trying to fight it, but all they offered her was surgery.
And that pill you were talking about, it's a chemo pill, not radiation. My friend was on it for his brain cancer till it started growing again. I personally don't think it's that great as he was only on it for 3 months and his tumor started growing again.

I wish for you, her children and her grandchildrens sake she would have at least tried to fight, but some people are just so stubborn, and honestly, sometimes, if you think about quality of life after treatment, to some people its not worth it. I know there are some things that I think of that if this Beast comes back and they say certain things have to happen, at the age of 26, it might just not be worth it to me to keep going. but that is everyone's choice, and sadly she felt her best option was to go out without treatment.

At least now she is not suffering anymore. I wish you and the rest of the family the best and that you will be able to go on and enjoy your lives and remember the good parts of her, and not her stubbornness!