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PeteyB Offline OP
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I found this article in the Discovery Channel Blog. I did not find it comforting to learn that I Am Not Alone......... frown


I know there has to be thousands of people out there with no insurance, facing cancer.

My husband has been fighting Non-Hodgkins Lymphoma for five years now. First he was going to a clinic, then they transferred his treatment to a hospital. Because he has no insurance, they both "REFUSED" to treat him any longer. If it hadn't been for the VA, he'de be dead by now. He's still not in remission, so we face a long haul ahead of us.

With no insurance, what do other people do? Just die?

We so need financial aid in "This Country" to help people with no insurance who have cancer and other diseases. It just makes me sick that all we hear about is giving aid to Africa and other places. What about the rest of us?

The United States needs to think of helping people in this country who really need it.


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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PeteyB,

I agree with you on the US taking care of home first then the rest. There are so many here in the US that are homeless, hungry, no health care. Our prisoners get more in jail.

I seem to remember a story about a Man that broke the law to be sent to jail to get health care. Go figure?

Just look at what you went through !

Take care
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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OK
I did consider breaking the law for the purpose of obtaining Health Care. My deciding factor was that the jail time and "healing" time would not, according to Florida law, run concurrent. I would have had to commit the offense WHILE IN JAIL for this to occur. Please note these were the same legislators who wrote the Health Care District eligibility rules. laugh ( OK = only kidding)


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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I am so glad I came acrosss this site. My husband was just diagnosed with stage 4 mouth cancer, he has to have 20 teeth taken out before he can start treatment(radiation and chemo 5 days a week for 7 weeks), as surgery is not an option do to it being too advanced(attached to muscles and bones) My insurance doen't go into affect till tomarrow and now they wont touch him as he is considered "uninsurable"...now we are getting the run around on getting him help. That the lord, it seems like I have found the support we will need through this, as his dr said we have a long road ahead of us.


Husband age 48, diagnosed 5/10/07 with stage 4 mouth cancer, surgury not an option, teeth removed 6/21/07, 5x wks of rad with Cisplatin 1x week for 7-8 week course starting 7/10/07. Update 02/25/08 right maxillectomy and right infratemporal fossa resection
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tnkay,

Post any question you need answered in the appropriate section and you will get all the help you need.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Hello tnkay2001

Welcome to the Oral Cancer Foundation Website. We are sorry you had to join us, but we will help you get through your journey.

This is a very helpful forum. Everyone here will assist you if they can. I know you have many questions and you could not have come to a better place for help, assistance and compassion.

I will suggest a few things to help you get familiar with this site. Read the faq at the top of the page. Put your Dx & Tx in your signature box. (recomended but not required). The faq will teach you many things about this site. I also recomend you go to the "general board" forum and read the topic "how to get the most out of this forum".

Once you familiarize yourself with this site and understand how to use it and to access it's search engines and all the resources and post your topics in the appropriate forums you will find this site invaluable.

Post in the "Introduce Yourself" forum a note like you wrote above so everyone can greet you.

Wishing you the best and looking forward to assisting you. Sincerely, Petey


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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Here is an interesting question to pose to your Congressman\woman. Dear ______ Could you please share with me[your constituant with a vote] how much you pay for Medical Ins.and your prescription drugs each year? Thank you very much, John[Jane] Q. Voter. Ask your local newspapers and radio stations to do an article on this- stir things up- and insist on answers. Amy in the Oz


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
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PeteyB Offline OP
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Hello Amy

I live in South Florida (Palm Beach County) where all the hoopla was generated in the last 2 Presidential Elections.

If I sent this to Tallahassee "as is" with a self-addressed return envelope it would come back with a "NO" written after Dear and they will have thought it was an absentee ballot for Medicare Prescription Drugs! :rolleyes:

We don't keep the sharpest knives in the "cabinet" down yonder! eek


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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Hi, I believe that everyone should have affordable health insurance, but as retired solider I dont believe that it should be government operated. I say this because of the VA system and the Military system of health care. During my career I did and went where Uncle told me to, and whwn I lest they said "thank you for your service but because you were not injuried on active duty you have no VA benefits". My employer (State of Vermont) has good health insurance. The Military system works great if the user is an Officer or a member of Congress, but the enlisted solider has a harder time in the system due to the cast system in all services. The VA is never fully funded reguardless which party is in the Whitehouse. So there must be a better system, for which I do not have the answer.


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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The problems with the VA and the Indian health Service (the other government run health care system we have already) is more because of funding than that they are government run. And not all VA hospitals are bad, some are very good, which is also true for the Indian health Service from what I understand (my ex-husband was Cherokee and my ex-mother-in-law worked at one of those hospitals). And despite their problems, the people that are covered by these benefits never have to worry about fighting to get care when they need it, like Petey and many others have had to do.

If we took the money we put into private insurance companies, who need to post large quarterly profits, and put that into a national system, we could have a high quality one. As a nation, we spend more on health care than do the nations like Canada and the UK with state-run systems. And yet, we have many many people who don't have any coverage and others who believe they are covered then have essential treatment denied due to some loophole in their contract when they really need it! Why is that? Because what we spend is going to insurance company stockholders a profit.

Believe me, I have no problem with publicly held companies, owning stock, or making money from that (That's what my retirement account is all about). But it's just totally incompatible with quality health care.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Nelie,
have you ever had any direct experience with the VA? I have, I am a Vietnam Veteran. I have actually spent 3 weeks in a VA hospital. I have many friends who are veterans.

Most health organizations that I know of are non-profit. Certainly some are in it for profit but is that always a bad thing. Kaiser is taking it's profits and building new hospitals and improving their infrastructure.

Yes we do spend more than the Canadians and the UK - would I trade my health care for what they get - not on your life. Do I trust the government to wisely spend my money - hell no. Socialized medicine has many downfalls and you need to be more factual and specific. We have one of the best health care systems in the world. Prove me wrong.

I have to totally agree with Bob that if the government gets it's hands on the money for a universal health we will be universally f****d up.

What we are really talking about here are the 15% of Americans who do not have a health plan. 85% of us do.

I am not arguing that all Americans should have some form of health care, just that addressinbg the 15% that don't shouldn't require a "universal" health care system.

Did you know that the American health system demand for state of the art medical devices constitutes 52% of the entire global market?

Did you know that we have more comprehensive cancer centers in California than all of Canada!

Last edited by Gary; 02-28-2008 06:54 PM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Sorry for being gone so long, but after the lose of a dear friend on this site and everything with my husband..things have been crazy here. Wondering if anyone else has been through this or has advice. As you know my husband has Stage 4 oral cancer, he was told the only way to get insurance to cover treatment was to quit his job to get insurance..done. Got insurance, did treatments, applied for SSDI..got it..now the problem. Since he was approved for disability(2 children getting check from him too) your income is above the qualifing guidelines (this is Tenncare) and you are losing your coverage. WTF.. now what?? Am I supposed to quit my little job, get legal separation, divorce, sit back and watch him suffer??? It seems everytime we get a few steps ahead, we get knocked down again. There is no way we can make it on what they draw a month, but Tenncare doesn't care. Any advice..done venting..for now. cry

Last edited by tnkay2001; 01-29-2008 06:17 AM.

Husband age 48, diagnosed 5/10/07 with stage 4 mouth cancer, surgury not an option, teeth removed 6/21/07, 5x wks of rad with Cisplatin 1x week for 7-8 week course starting 7/10/07. Update 02/25/08 right maxillectomy and right infratemporal fossa resection
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SSDI shouldn't be considered taxable income. I would find a good tax expert in Tennessee. It probably is your income they they are considering. Most state health care systems practically force you to be impoverished before they will cover you. In California you can't own real property or they can put a lien against it to repay Medical. You also can't own a vehicle worth more than a than a few thousand. It sounds like you are in the infamous "donut hole". I take it that he didn't have insurance at his job? If he did you might be able to COBRA it (that's not cheap either). After 2 years on SSDI he will automatically get Medicare - but it's the first 2 years you have to worry about.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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You are so on with these statements Gary. I am very familiar with the Canadian health system, most of my extended family lives there, and trust me..........they pay a fortune for their health care! AND they have to wait forever to get treatment. Seems like we Americans always want to look at the bad side of everything...........we forget that we live in the most abundant country in the world. I agree that the uninsured need help, well, at least most of them do. But let me play the ass here and say that I know of many people that CAN afford insurance.......they simply choose not to. My husband and I raised a houseful of kids and we managed to pay for health insurance, it was a matter of having our priorities straight. We had friends on the same income as us, less children, that flat out refused to pay for insurance. Instead would go to the ER for everything and never pay the co-pays. They were not worried about their credit I'm assuming! And all of this is coming from me who just had to go to battle and go broke to have my last surgery. I realize it's not perfect, but 99% of the time, my health care needs are taken care of.

Last edited by minniea; 01-31-2008 03:30 AM.

SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Gary,

They need to check the State's definition of "income" which doesn't have to be U.S. "taxable income". Some States define "income" as "gross income from all sources". A call to the respective agency or reading an on line pamphlet may be cheaper than getting one of those high priced CPA's involved.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Go to Mexico and cross a fence to get back in the US, Tell them you are an illegal and you will get treatment free. Plus other benefits. LOL


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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TNKAY,

Does your cancer treatment center have a social worker on staff? That person might be familiar with what others in your situation have done and might be able to present some options to you.

I wish you and your husband well.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Yes, they had us as a charity case before he was approved for Tenncare, but his rad/chemo drs wouldn't set up treatment plan until he had coverage.


Husband age 48, diagnosed 5/10/07 with stage 4 mouth cancer, surgury not an option, teeth removed 6/21/07, 5x wks of rad with Cisplatin 1x week for 7-8 week course starting 7/10/07. Update 02/25/08 right maxillectomy and right infratemporal fossa resection
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[quote=mhupe]TNKAY,

Does your cancer treatment center have a social worker on staff? That person might be familiar with what others in your situation have done and might be able to present some options to you.

I wish you and your husband well. [/quote]

My Cancer Center had a "Patient Advocate." That nasty little piece of work called me on Friday afternoon at 3 PM when I was to start my treatment on Monday morning to tell me that If I didn't tell her when and where I was going to get the money to pay the estimated difference between what my insurance covered and their bill, I could not start my treatment. They already had $14,000 in cash in my account.

Two and a half years later I'm still at odds with the billing department who seems to misplace my payments and doesn't credit my account. They are incapable of accounting for anything but are really good at just pushing buttons on their computers. They have received a registered letter stating that the account is in dispute.

Don't rely upon anyone working in the cancer center to help you with finances.


Survived the "cure" of hemi-glossectomy and 30 IMXRT treatments. Ruptured my colon with 4 rads to go. Got that mess reversed then had to deal with the effects of the "cure"

17 months out or radiation and learning how to be different.
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After my Ins. UPMC out of Pittsburgh said they would pay to have my teeth removed because it was a medical necessity, today Ireceived a statement from theOral surgeon for $2013.. How sweet it is. Tomorrow is big go round time for all involved.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Did the surgeon submit the bill to your MEDICAL insurance or dental? Do you have a copy of the EOB and why it was denied? I wouldn't be writing any checks until I'd investigated why this expence wasn't covered.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Gary: Did you know there are more PEOPLE in California than there are in Canada?? Seems to me that it would make sense then to have more Cancer Centers in California than Canada. I won't debate the merits of either system - I truly believe they each have their pros and cons, but please use facts not distortions like the one above. Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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I was posting the following reply to Gary's reply to my post when magically his reply disappeared (anyone confused yet??). I have decided to post my reply anyway - just to clarify what I said the other day about "distortions"

The distortion I referred to is the comment about "more cancer centers in California vs all of Canada" which certainly carried a tone/implication that due to that simple fact - Canada was some how deficient. My point is that the entire country of Canada has 33 million people vs the 36 million who reside in Californa (based on your 2006 census). Therefore on a per capita basis one would EXPECT more Cancer centers in California.

I apologize if anyone took this personally - as I said I believe both systems have their pros and cons.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Donna,
My earlier comments were more about our political system in the US, which is basically corrupt and driven by special interests. I researched your concerns and discovered some very interesting facts about the hospital morbidity data for Canadian hospitals and it is significantly lower than the US. Life expectancy is higher as well - quite a bit higher in fact.

But would I trust the government to institute a Canadian style health system here? Not on your life - they have already pillaged the social security fund and if they ran into a pot of gold like the health care system they would pillage it too. Frankly, in some respects I think we would be better off with a benevolent monarchy instead of a 2 party system that screams "CHANGE" every 4 years and ALWAYS for the worse.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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