My husband was just diagnosed with stage 4 mouth cancer. They say surgury is not an option,as the roots are too far into muscles and bones of face. We are tring to get him insurance now, as he has to have 20 teeth taken out before they start treatment. He will have 7 weeks of radiation and chemo 5 days a week. We were told he has 40-50% chance. Those numbers don't sound good, has anyone been in this situation? Both of us are scared to death...we also have 2 children, the oldest knows some but the little is too young. How can we handle it when he does start treatment, they will ask all kinds of questions. Ok enough I'm just going on and on, that you for any advice and for your forum.

Welcome to OCF .Like my husband yours seems so very young to have been diagnosed with this terrible disease.Take some time out and use this site to learn all you will need to know about the actual facts of this disease,the types of treatment ,the after effects and the future outcome.You will find these on the side bar on the home page.When you have read everything write down your questions and then fire away.There are dozens of very experienced people on this site who will be more than able to lead you through this mine field just as they did me.I would never have managed withour them.

Dear tnkay2001

You did good with your signature. That will help all. Welcome again.

In the forum "Currently in Treatment" there is a topic titled "When Mommy or Daddy has cancer" by Sue K on 4-22-07. I will E-mail you the thread. This may be helpful.

You need to go to the Department of Health, or Family Services in Brownsville and apply for "Emergency Medicade". Or find out the County Hospital that handles people with no insurance. They will help you. You need to get treatment going NOW. This is an acute emergency and he needs to get his first treatment asap like yesterday.

I just fought for 60 days with the state of Fl. to get help but mine was a different story. You should get in contact with the Dept of Health immediately. I will put my phone# in an e-mail. You can call me anytime and I will help if I can. You can E-mail me also.
I will try to get more info and send it to you. I will write back shortly. Take a deep breath. And be strong. Everyone here will help you get through this. We know what you are facing, and we will get you thru this. Petey

Dear Kay -
Please know that several people have walked the rocky path your husband is about to tread. We are all here for both your husband AND for you as a caretaker. This is an excellent place to "vent" as his treatment progresses. As Cookey suggested, comb thru the extensive archives using the OCF search capabilities, then come back and ask more questions about anything that you must know. Petey is also very willing to help. Wishing you the best...come back often. Warmly, JaneP

Hi Kay,
I raise this question every time someone says they have to a zillion teeth pulled. Did they give you a reason? Are his teeth in bad shape? Or is it simply that this dr still has everyone's teeth pulled that will be in the radiation field. They used to do this 10 years ago to healthy teeth, but no longer do it.

If his teeth are healthy, I'd get a second opinion. 20 teeth is a lot and it is forever before you can get dentures after radiation and they cost a fortune. Plus it makes recovery that more difficult if you can't chew on anything but front teeth.

Take care,
Eileen

Hello tnkay2001

Can we call you Kay? What is you husbands name? I'm sending you a "link". Click it and find where you need to go or call. Look in the online services. You should find all the info you need here.

http://www.state.tn.us/health/

I do not think you will be able to get insurance and you must go thru the state. In your husband

We have an appointment Monday with Dept of human services, they have something called Tenncare, that we are trying to apply for. Also, just got a fax that cancer dr sent to oral surgeon, will post more in a bit, so maybe someone can help me with the all these big words they use. And yes his teeth are in very poor shape, most are broke off at gums, so this won't be easy on him either.

Hi Tnkay,

If his teeth are that poor, it's wise to have them removed. Sounds like he hasn't had good use of them for awhile so it won't be such a hardship on him now.

Please let your husband know that I was 41 when I was diagnosed with stage 4 oral cancer in my jaw and four years later I am doing fine. A few differences in me and how my mouth works, but nothing that keeps me from doing everything I did before the cancer. DON'T let the statistics given to you matter, they will only scare you. When I read the statistics I considered my life over, done, went into a huge depression. Then I got over it and realized my situation is unique and can't be measured by someone else's outcome.

Right now, you need to find him treatment. You won't find an insurance company that will take him on now, not after a diagnosis of cancer. Take Petey's advice and try the routes he's given you.

As far as your children go, I still have three at home. Our youngest was 9 when I was diagnosed, to young to understand it all. We didn't give her all the details but at the same time, didn't hide anything from her either.........if that makes any sense. No need to sit her down and give her all the scary stuff, just give him/her the condensed version of it, let him/her know that Dad WILL be sick for awhile but that docs are doing all they can to make him healthy again. Most importantly, keep the kids schedules as close to the same as possible. Dedication to this served my family well when I was going through treatment, it really helped my younger kids.

Good luck and talk to you soon,
Minnie

Here are three links that will help you with the terminology.

www.cancer.gov/dictionary/

www.ask.com

http://web.utk.edu/~aalix/abbreviations.html

Also, use the two search engines in this site. And there is so much information here. You just have to find it. Surf the site, and you will learn a lot.

Post anything you need help with. You are not alone in this difficult time. We are always here.

Be very blunt with the Health Dept. Tell them that AS WE SPEAK THIS CANCER IS GROWING. There is no time to be waiting for approval. It is almost like your husband is "bleeding out"...The bleeding needs to be stopped NOW! Tell them this is an ACUTE EMERGENCY. Do Not Let Them Give You A Run Around. He should be in treatment now. YOU HAVE TO STAND YOUR GROUND WITH THEM. I KNOW. Good Luck. Petey

ok here we go.

Ct scan does show bone erosion of the maxilla posteriorly at the tuberosity with extension into the pterygopalatine and infratemporal fossa. The lateral pterygoid muscle is thickened. The planes between it and the medial pterygoid muscle are gone and this loss of fat planes continues all the way to the mandible and looks to go right up to the temporomandibular joint as well, though with outgoing erosion of the mandible. This definitely would explain his significant pain and subjective and odjective trismus. Surgically. it is extremely difficult or effectively impossible to be able to eradicate tumor when it has spread along these muscles and fascia planes of the infratemporal fossa, and even if one could technically achieve negative margins, rarely is it ever the case and local recurrance is high. His cure is going to depend on whether or not he has a good response to chemoradiation therapy and it makes every bit of sense to do that up front.

Hello TK

That is a tough diagnosis, but the TX does make sense. I am not a Dr. and do not have this type of cancer.

I have however read a great deal on this site and others. The one thing that "jumps out" at me is something I read about this awhile ago. He should be very careful about what he eats and try not to bite down or chew to hard. I think his jaw bone may be very brittle and it would lead to dire straights if it broke while masticating (chew) his food. Ask your Dr. about this.

Also, make sure he gets sufficient pain medication. And maybe one or both of you could use something for anxiety?

Keep posting. This forum will give you all the tools and strength you need to fight this beast. Ask anything, rant, and vent your frustrations, whatever.

Everyone here is either afflicted or is a caregiver. We will help you see the light, and help you emerge from this dark and terrifying situation.

My prayers go out to you and your family. Petey

In laymans terms it looks as if his disease is in the jaw bone an has spread quite extensively into the surrounding muscles and tissue.It makes sense that the tissue and muscle invasion will need to be treated with radiotherapy as they dont seem to have a clear margin of healthy tissue to measure against.The word fossa indicates a hole or space and infratemporal is the indentation at the side. of the hinge of the jaw. So my understanding would be invasive carcinoma of the mandible.The affected areas are to do with jaw clenching and chewing and the pterygoid bit is at the junction of the jaw bone just below the ear.I am not a Doctor but i am a registered nurse and this is only my limited view i am sure your Doctors will be able to explain it in full when you see them.

does anyone know about lueoplaskia i had a biopsy

Lolita -

I assume you mean leukoplakia. As you can see from my signature, my husband's dentist noticed a small leukoplakia -- basically, it's a white patch -- on his tongue and sent him to an oral surgeon for a biopsy.

Here's how the founder and executive director of OCF, Brian Hill, replied when I first asked about leukoplakia a year ago:
[quote] Leukoplakia is a PRE-cancerous condition that does not always move completely into malignancy. Dysplasia are those cells which are no longer normal, but they are not really malignant yet...an in-between state, so to speak. Dysplasias also do not always go completely over to the dark side, but they are a step in that direction... and having them removed, or watched very regularly is prudent. Dysplastic leukoplakias can often return after surgical removal, many times done with a laser, sometimes via a blade excision. Keep an eye on things even after the removal from now until forever. [/quote]In my husband's case, that initial biopsy showed moderate dysplasia (abnormal cells, but not yet cancerous), though a more thorough excisional biopsy (which removed it all) a month later showed it had moved into very early stage cancer. He has been checked regularly by an ENT at a top cancer center since then, as well as by the ENT who did the excisional biopsy.

Just a suggestion: So that your posting doesn't get lost under someone else's topic, start a new topic to ask a new question. It's easy -- just click on New Topic at the top of the page.

You'll also learn a lot by using the two search engines. The one at the top of each of these pages (in the center) searches the message boards; be choose to "Search All Open Forums" to get the greatest number of results. At the bottom of each page, toward the right in the dark gray area, is a Search button that links to the search engine for the main part of the Oral Cancer Foundation website. The information there includes a good overview of oral cancer, along with the latest news articles, scientific papers, treatment options, etc.

Please let us know the biopsy results. There are many people here who have been where you are now.

All the best,
Leslie

TK,
Liz had a lot of good information for you. I too had signifcant mandibular involvement, however surgery was performed in my case since the tumor had not migrated into facial soft tissue structures too extensively.

the tempormandibular joint is the hinge joint on either sides of the jaw. Trismus refers to the inability to open ones mouth. that's a very common thing for many oral cancer patients.

To restate what others have said..keep coming back here. There is a vast amount of first hand experience to draw strength from. You're both in for a tough journey, but it is not hopeless. Statistics will drive you crazy and really don't mean anything to you individually. concentrate your efforts on getting treatment underway as quickly as you possibly can, and get ready for a fight; you've got one on your hands
Wayne

Thank all for the info and support. Off now to start making more phone calls. We were treated like we were dirt when applying for Tenncare today. Took all of our info, made copies, no questions asked, said would recieve a "denial" letter in the mail. WTF!! Didn't even enter info in system and telling us he is denied (since he is still working). Said would finish our case in 4-5 days. I guess both us need to quit our jobs and just start losing everything, I told them I guess he needs to be half dead to get any help here. God please forgive me, I am so MAD and feel helpless against a system that is supposed to be there for help.

Tnkay,
I had a very large tumor in my lower jaw and I had sucessful surgery and radiation four years ago. Concerning Petey's comment on his jawbone being brittle and not eating anything hard.......my doctors never told me anything like that so make sure to ask your doctor before you start limiting your husbands diet.
Minnie

WTF! Is the correct response! I just went through this with the State of Florida. Here we go again! It's Petey II. You need to find what county hospital the Health Dept. runs and go to the emergency room and tell them he can't breath! Fall down and don't get up! Say he's dizzy and seeing double vision. I can not believe this BS!
WTF!

You need to make the sign I was gonna make and parade around the county courthouse. The sign should read:

AT WHAT STAGE OF DEATH DOES CANCER BECOME AN EMERGENCY!

Call a TV station and tell them what is going on. That is how I GOT MY HELP!

I will call my station here and tell them there is a repeat going on. Maybe they will pick it up.
tnkay2001 call me. I will help find a way. 561-667-3631 Petey

The Lord Works in Mysterious ways.

I just check my E-mail and WPTV News 5 left this message. I will call them at 8:00 am tomorrow.


From : Malloy, Timothy <[email protected]>
Sent : Monday, June 4, 2007 4:58 PM
To : <[email protected]>



|
|
| Inbox


Peter..lots of people asking about your progress..is there any way we could make a brief visir tonight Mon? Tim 693 8753

WPTV | News Channel 5


Malloy, Timothy <[email protected]>
Sent : Monday, June 4, 2007 8:25 PM
To : "Peter Billias" <[email protected]>
Subject : RE:



|
|
| Inbox


OK don't want to crowd you,,but would be great to do a short
interview....doc told me youre in great shape.

-----Original Message-----
From: Peter Billias [mailto:[email protected]]
Sent: Monday, June 04, 2007 8:21 PM
To: Malloy, Timothy
Subject: RE:

Hey Tim.
I just got home 7:30. pm
I had appnt. with Dr. Ellis, then Dr. Dass at Wellington Cancer Center .

Tomorrow Dr. Thenappan for chemo. Tomorrow is fine. I'll call. Petey
561-667-3631


>From: "Malloy, Timothy" <[email protected]>
>To: <[email protected]>
>Date: Mon, 4 Jun 2007 16:58:59 -0400
>
>Peter..lots of people asking about your progress..is there any way we
>could make a brief visir tonight Mon? Tim 693 8753
>
>WPTV | News Channel 5


I'm going to have him read this thread. Maybe they will call a sister station in Tennessee NBC network. They might bite.

Petey, you are wonderful, thank you so much for your advice, kind words, and continued support of our situation. Why aren't there more people out there like you??

Hey TK

I just awoke to the need of a pain med. This routine is getting old. I wake up, take pill, check computer till meds kick in, return to bed. I pray this will end soon.

Then when I read the posts here I realize that my problems, large in my perspective, are but a fly on an elephant's back compared to what some here are facing.

In response to your above stated question:

There are many people like me. The ironic and sad fact of the matter is that so many are right here on this website. I will not name names (too many) for fear that I may fail to mention someone.

I think it is the unique quality that we humans possess. We are at our best, when things are at their worst.

Stay strong. Petey

PS: I am at the stage of just starting to lose everything for real. I wonder several times a day if all this pain should just be put to sleep.

Dear Petey
there is an old saying about it being "darkest before the dawn" cant remember the exact words,but i always found Robin was at his worst first thing in the morning.The pain always seemed more acute,and he was always very low.On most days after a couple of cups of tea and a freshen up he seemed a lot brighter.I think if you are managing to sleep then you get out of sync with your pain med schedule,and when you wake up the level of medication in your blood stream is very low.The use of a slow release patch helps with this situation as you receive a steady measured dose of pain relief 24/7 and can top up with your regular meds.Get this sorted before you start tx , Petey as i doubt the situation will get better anytime soon.Stay focused my love it will be worth it in the end Easy Rider.

love liz

tnkay

Are yall coming to Memphis for treatments?

I like Petey suggestion of the TV.

WREG channel 3 activist is Andy Wise. He may take on your story. May be worth a try.

Kevin

We are tring to get coverage, then have to have teeth taken out, Dr from Vanderbilt is going to try to set treatments in Jackson, if they are equiped to handle his case.

Never thought about Andy Wise...but with the luck we have been having, can't handle another turn down right now.

I see what everyone is saying, about a long hard road to travel and we are just beginning..God..help us.

Here's a wild thought- there are several more "presidential debates" scheduled. HOw about Petey and TK sendiang their story to CNN and Wolf Blitzer to see if he would work them into a discussion in a future debate of how the current medical policies in the USA are not working. Amy in the Oz

Here's another.

We can have Michael Moore (controversial movie producer of "Sicko") drop Petey (me) and tkay2001's husband one mile off the Cuban coast in an inner-tube and we can paddle to shore while he films it for his next movie "Sicko II- desperate Americans flee to Cuba for Health Care"????

-----------ALL KIDDING ASIDE-------------------

I can make light of my situation "now". But tk2001 is in a "REAL FIGHT FOR LIFE" right now and I am desperately trying to do what I can. I will post either later today or tomorrow.

In looking back on my fight for life, I am really pissed off. I just was looking at my pre-op pictures my daughter took of me after I shaved my goatee. The lymph node, which was my first sign of serious trouble, grew 8x its original size in the 60 days I waited.

tk2001, I'm trying to help, but you need to take "desperate measures" to get the medical care you need. Maybe drive him to Nashville with all the medical paperwork you have and DEMAND to see the Governor!

Tkay2001 GO TO THESE WEBSITES:

http://www.state.tn.us/

http://state.tn.us/health/

THIS IS A FIGHT TO SAVE YOUR HUSBAND'S LIFE! WE ARE ALL BEHIND YOU!

Ok I have emailed John Wilder, Phil Bredesen, and our local news station person, Andy Wise. I told them exactly how I felt and told them I wanted to hear from them, what they expected our family to do. I will continue emailing and calling until I get a response and will keep you posted.

Tim Malloy the reporter who is following my story is to do another segment tomorrow. I told him about TK's husband. He said we could talk tomorrow. But his station WPTV5 is a NBC affiliate and Andy Wise, WREG3 is a CBS affiliate.

I will ask him to make a courtesy call, and maybe segway into it in a brief 1 sentance in my interview about the plight of the uninsured and cancer. That this is happening all over the USA. I also want to ask him "point blank" why they always edit out when I say the Oral Cancer Foundation, or www.oralcancer.org.

There are 60 million uninsured Americans. And I read somewhere that more than 1/3rd of those with insurance (80 million) are under insured.

Thank you Petey, I just hope we can get something done. There is no excuse for what cancer patients have to go through to be heard and get help. The stress this is putting on our family, and most of all my husband, isn't good at all for his condition. Just makes his health worse, he has almost come to the point of giving up, he said, "by the time, if it comes, that I get help, the cancer will be far worse and the treatment won't help. I'm a dead man." To hear my husband talk like this, makes me want to fight even harder than hell to get him better.

GOD Bless the ones helping, bending over backwards to contact others on our behalf, and lending their support. You are God sent.

WMC TV5 is the NBC here in Memphis Petey. I used to go to Sunday School with the news director, but I understand he has left, so I do not have a contact for your reporter....

Good evening everyone! My husband and I live in Central North Carolina. Yesterday, we were told that my husband, who is 76 years old, has "invasive mandible squamous cell carcinoma". An MRI is being scheduled, so it will be a while before we have any idea what to expect as far as treatment. I feel very fortunate that I have found this site and hope that it will help us as we walk through this valley. Thank you for allowing us to join you! Lois and Buzz

Hello Emmylou1951 aka Lois and Buzz

Welcome to the Oral Cancer foundation website. You have come to the right place for help, information and compassion. We are sorry you had to join us but we will help you get thru this disease. We will hold your hand and walk with you. You are not alone.

I just sent you two E-mails that will help get you started and it will familiarize you with this site.

Post back here with any questions you have. Once you read my E-mails you will understand this forum a little better and should post in the "Introduce Yourself" forum.

All this is explained in the two E-mails I sent you.

You can E-mail me or post here if you have any questions about how to navigate this site.

All questions about your diagnosis of SCC should be posted here.

Good Luck and We are looking forward to helping you through your journey. Sincerely, Petey

TKay2001

Have you made any progress of any kind. I have not heard back from Tim Malloy. Please keep us posted.

Call me anytime, (you have my number) I am always here. If I do not answer, leave a message. I will call back shortly.

I am working on a few idea's for you. I also have a full plate to contend with here, but by no means have I put you on the back burner.

Nothing really new here Petey, I got your email and video, thank you so much. Vanderbilt did call and got info for financial assistance, with the way our luck has been, not getting hopes up. Have not received and responce back from emails sent, but that doesn't surprise me either. Please let me know how you are doing and what you are up to, know you are busy now, my thoughts and prayers are with you. Also everyone please call me Laura and my husband's name is Oscar..should have posted earlier.

Hey Oscar and Laura

I just sent you an E-mail. Hopefully we can get a response some time Monday.

Don't ever give up, and keep fighting. I know it seems hard but you can do this. You have a big support team here. Hang in there.

Write any questions you have right here. You can ask anything from A to Z or just vent. As we say here, the only stupid question is the one you don't ask...

Wishing and Praying for you. Petey

Just read your email Petey, thank you soooo much. Hopefully we will hear from someone soon. Something needs to happen and soon, it seems like he gets worse everyday, and the pain he is going through. We post more later.

Ok, here we go, another update. After having many doors slammed in our face and being treated like we were garbage by our local offices, we may have made progress. Husband had to quit his job today, we took his discharge papers to DHS for tenncare and they wanted us to come in for another interview in 2 weeks..WTF..we were just there last week. SOOOO, I called Social Security main office in Nashville, they are going to call husband within 2 days and let him apply over the phone for his disability and insurance. Then Vanderbilt hospital called and we have an appointment with radiology oncologist, this Friday. Don't know what they will do as this is our first visit with them. Also, got him and appt with oral surgeon in Memphis for June 19 for the teeth. Seems like I have spent the last week on the phone, things are slowly happening. I am tired of them dragging their feet, while I watch him go downhill. The hydro was giving him a headache and they switched him to darvocet, which doesn't give him headache, but makes him feel high and isn't helping the pain. Hopefully things will start rolling in the right direction, I am at my wits end.

Hello Laura and Oscar

I am so glad you have had something positive happen. Doesn't it suck (excuse me) that he had to quit his job to get help? Believe you me I went through enough WTF"s to last a lifetime.

Here is the positive thing. Once you see the first doctor you are "in the system" they have to take care of you.

When SS calls make sure you explain to them that he has cancer and that they would not help him because he was employed. That is why he quit his job. Also, he would not be able to work once he had started treatments. My doctor wrote on a RX that I would be disabled for 6 months. He will need that long to recover after the radiation.

I am not a doctor, and have not been through this. (Just starting) But I read this on this site. You can do a search here on radiation and you can verify what I say is true in most cases.

As far as the medication he needs something much stronger. Again YOU MUST put your foot down. Look the doctor in the eye and tell him Oscar has cancer and is not getting treatment. Therefore he is not getting better, he is getting worse. They gave me percodan and they did not help. Then percocette. Then I went on line and printed out from the RX book and he wrote me a RX for Oxycodone 30 mg. That did the trick.

DO NOT let SS give you the run around. I hate to bring it up but you must tell them he has a 40% to 50% shot at this. He must not be turned down. (DO NOT READ INTO THE PERCENTAGE ASPECT, EVERY CASE IS DIFFERENT)

Laura...You are handling this as best as possible. Try to relax a little. You have made great progress. Once he starts treatment the sinking feelings will ease up. You have done everything possible. Continue to be the loving wife you are to your whole family. You are the "glue" holding everything together right now. My prayers are with you.

I will write back shortly. Petey

Ok I have emailed John Wilder, Phil Bredesen, and our local news station person, Andy Wise. I told them exactly how I felt and told them I wanted to hear from them, what they expected our family to do. I will continue emailing and calling until I get a response and will keep you posted.

Tim Malloy the reporter who is following my story is to do another segment tomorrow. I told him about TK's husband. He said we could talk tomorrow. But his station WPTV5 is a NBC affiliate and Andy Wise, WREG3 is a CBS affiliate.

I will ask him to make a courtesy call, and maybe segway into it in a brief 1 sentance in my interview about the plight of the uninsured and cancer. That this is happening all over the USA. I also want to ask him "point blank" why they always edit out when I say the Oral Cancer Foundation, or www.oralcancer.org.

There are 60 million uninsured Americans. And I read somewhere that more than 1/3rd of those with insurance (80 million) are under insured.

Thank you Petey, I just hope we can get something done. There is no excuse for what cancer patients have to go through to be heard and get help. The stress this is putting on our family, and most of all my husband, isn't good at all for his condition. Just makes his health worse, he has almost come to the point of giving up, he said, "by the time, if it comes, that I get help, the cancer will be far worse and the treatment won't help. I'm a dead man." To hear my husband talk like this, makes me want to fight even harder than hell to get him better.

GOD Bless the ones helping, bending over backwards to contact others on our behalf, and lending their support. You are God sent.

WMC TV5 is the NBC here in Memphis Petey. I used to go to Sunday School with the news director, but I understand he has left, so I do not have a contact for your reporter....

Good evening everyone! My husband and I live in Central North Carolina. Yesterday, we were told that my husband, who is 76 years old, has "invasive mandible squamous cell carcinoma". An MRI is being scheduled, so it will be a while before we have any idea what to expect as far as treatment. I feel very fortunate that I have found this site and hope that it will help us as we walk through this valley. Thank you for allowing us to join you! Lois and Buzz

Hello Emmylou1951 aka Lois and Buzz

Welcome to the Oral Cancer foundation website. You have come to the right place for help, information and compassion. We are sorry you had to join us but we will help you get thru this disease. We will hold your hand and walk with you. You are not alone.

I just sent you two E-mails that will help get you started and it will familiarize you with this site.

Post back here with any questions you have. Once you read my E-mails you will understand this forum a little better and should post in the "Introduce Yourself" forum.

All this is explained in the two E-mails I sent you.

You can E-mail me or post here if you have any questions about how to navigate this site.

All questions about your diagnosis of SCC should be posted here.

Good Luck and We are looking forward to helping you through your journey. Sincerely, Petey

TKay2001

Have you made any progress of any kind. I have not heard back from Tim Malloy. Please keep us posted.

Call me anytime, (you have my number) I am always here. If I do not answer, leave a message. I will call back shortly.

I am working on a few idea's for you. I also have a full plate to contend with here, but by no means have I put you on the back burner.

Nothing really new here Petey, I got your email and video, thank you so much. Vanderbilt did call and got info for financial assistance, with the way our luck has been, not getting hopes up. Have not received and responce back from emails sent, but that doesn't surprise me either. Please let me know how you are doing and what you are up to, know you are busy now, my thoughts and prayers are with you. Also everyone please call me Laura and my husband's name is Oscar..should have posted earlier.

Hey Oscar and Laura

I just sent you an E-mail. Hopefully we can get a response some time Monday.

Don't ever give up, and keep fighting. I know it seems hard but you can do this. You have a big support team here. Hang in there.

Write any questions you have right here. You can ask anything from A to Z or just vent. As we say here, the only stupid question is the one you don't ask...

Wishing and Praying for you. Petey

Just read your email Petey, thank you soooo much. Hopefully we will hear from someone soon. Something needs to happen and soon, it seems like he gets worse everyday, and the pain he is going through. We post more later.

Ok, here we go, another update. After having many doors slammed in our face and being treated like we were garbage by our local offices, we may have made progress. Husband had to quit his job today, we took his discharge papers to DHS for tenncare and they wanted us to come in for another interview in 2 weeks..WTF..we were just there last week. SOOOO, I called Social Security main office in Nashville, they are going to call husband within 2 days and let him apply over the phone for his disability and insurance. Then Vanderbilt hospital called and we have an appointment with radiology oncologist, this Friday. Don't know what they will do as this is our first visit with them. Also, got him and appt with oral surgeon in Memphis for June 19 for the teeth. Seems like I have spent the last week on the phone, things are slowly happening. I am tired of them dragging their feet, while I watch him go downhill. The hydro was giving him a headache and they switched him to darvocet, which doesn't give him headache, but makes him feel high and isn't helping the pain. Hopefully things will start rolling in the right direction, I am at my wits end.

Hello Laura and Oscar

I am so glad you have had something positive happen. Doesn't it suck (excuse me) that he had to quit his job to get help? Believe you me I went through enough WTF"s to last a lifetime.

Here is the positive thing. Once you see the first doctor you are "in the system" they have to take care of you.

When SS calls make sure you explain to them that he has cancer and that they would not help him because he was employed. That is why he quit his job. Also, he would not be able to work once he had started treatments. My doctor wrote on a RX that I would be disabled for 6 months. He will need that long to recover after the radiation.

I am not a doctor, and have not been through this. (Just starting) But I read this on this site. You can do a search here on radiation and you can verify what I say is true in most cases.

As far as the medication he needs something much stronger. Again YOU MUST put your foot down. Look the doctor in the eye and tell him Oscar has cancer and is not getting treatment. Therefore he is not getting better, he is getting worse. They gave me percodan and they did not help. Then percocette. Then I went on line and printed out from the RX book and he wrote me a RX for Oxycodone 30 mg. That did the trick.

DO NOT let SS give you the run around. I hate to bring it up but you must tell them he has a 40% to 50% shot at this. He must not be turned down. (DO NOT READ INTO THE PERCENTAGE ASPECT, EVERY CASE IS DIFFERENT)

Laura...You are handling this as best as possible. Try to relax a little. You have made great progress. Once he starts treatment the sinking feelings will ease up. You have done everything possible. Continue to be the loving wife you are to your whole family. You are the "glue" holding everything together right now. My prayers are with you.

I will write back shortly. Petey

Hello Laura & Oscar

How did the SS call go? I hope my quess is wrong. But having spoken with them on Friday myself, I added another WTF notch in my belt.

I hope you fared better. Keep us posted. I sent Andy Wise another e-mail....? 3 e-mails.....no response?

Had a real nice case worker, said she would everything she could to get him approved. But..on the other subject..had appt at UT College of Denistry in Memphis. We were told that we had to be a resident of their county to get help...heck they knew we weren't when we made the appt. Dentist said if he could he would have done surgury today, free of charge, but his hands were tied. He said it is all political, and not having a pocket of money, makes a big difference. Where are all these dentists that do charity work around here??? I am to the point of calling them all in phone book and begging for help. I am TIRED of watching my husband go through this and like no one gives a shit, because we are hard working, BROKE American's, I WILL NOT stand back and watch my husband go down any more than he has and give up on his life and our family's life.

Well Petey was right again!!! Raising hell is what it takes to get someone to listen. We have an appointment at 10 in the morning to have 21 teeth taken out...will be knocking him out. Yes his teeth are in awful condition and this must be done..NOW. We have another appt July 2 with radiologist to set treatment plan in place. So the ball is rolling..slowly..but getting there. Thank you all for your support and help, will post more after procedure tomarrow. Bless you all and a xoxo for you Petey, your the best!!

Thank You!

You made my heart sing! I am not alone here! Many have done the same for others. That is why the OCF is so woundrous. I am so proud of You for your own resolve.

Remember to get an RX for pain before you leave the dentist. Something "strong". Percocet won't due! Also, give Oscar and old pillow and pillow case as he will bleed for a day or two while sleeping.

Ask the Dentist for an RX for or Carnation Instant Breakfast VHC.

Ensure is another good product to use for the first 3 to 5 days.

Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link:

http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183

Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU.

Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it.
(Posted by Dr. Jerry Wilcks DDS)


We are all glad you can now post in the "Currently in Treatment" forum.

Kep us posted. Petey

Petey,

I am Mr VHC. If Jerry posted it he stole it from me, which I doubt. Just to set the record straight. LOL

Hello David.

I stand corrected!

All the jargon here is sometimes confusing for me?

VHC, HPV, VHS, VCR, HBO and especially CRS!

I am merely a rocket scientist and never professed to being a brain surgeon

Apology accepted.

What is CRS anyway?

...lol...CRS ...can't remember s***! me too!

CRS . Chemobrain ...

Difference???


Seen on a tee shirt:

I have ChemoBrain....What's your excuse?