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New Member needing help

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Hi all, I am not sure if I am in the right area or not. I have a mass of undisclosed origin on the base of my tongue going into my tonsils. I have had five surgeries with a trache placed in the first surgery to keep my airway open. I have had both positive and negative biopsies and feel like I am on a roller coaster of emotions. I have been accepted at Cancer Treatment Center of America in Tulsa next week but not sure whether I can do it financially. We have lost of all our friends with this. I live in a small town in rural Missouri and am not aware of any more options available to me and my family. Can anyone please help and advise of what my next step should be? Thank you very much.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Sorry to hear of your C. Tulsa? You in southern Mo.? If in the northern environs, perhaps you might opt for the U of Iowa at Iowa City. They claim to be very good with H&N- my Drs. all have ties to them, and I'm 18-months, NPC, now.

As for the financial- all med centers are supposed to have people whose role is only the money side of this; and, so, wherever you go should have someone who can spell it out for you as to where help might be. No insurance?

Since you brought-up the financial: treatment is very expensive- especially the radiation, and if a hospital stay(s) and operation(s) are involved. I had United Healthcare, with the zero co-pay and health savings thing. Cost me $1,500 to take care of the deductible, then everything else was free, except for the formula I used as my Nutrition. The not-so funny thing is: I've got the records to prove what the rad charges were, and know that they had to accept only 35% of those charges, because of their contract with United Healthcare. So, keep that in mind. You might be able to negotiate the costs down in a major way.

Please keep us informed.

kcass

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Lady,

Sorry to hear of your trials. Can you let us know what the type of Cancer you have - SCC ? The biopsy should have those details. Did you get a PET /CT Scan ? Have you had any Chemo or radiation as yet ? Was there any spread to the lymph nodes (would b pending the PET CT)

As you probably know the treatments are generally one, two or all three of: Surgery (you've had), Radiotherapy, and Chemo. I like to add a 4th treatment, which is DIET. I will PM you more details of that path.

Get back to us.

Scambuster

train-nut
Posts: 101
Joined: Jun 2008

I'm sorry that you're having so much trouble. I live in Tulsa. You are welcome to call me at 918-749-7773. I have a thought or two that might help. Rich

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Excellent- that's from everybody, my friend.

kcass

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Welcome to CSN, just wishing you the best with your treatment

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Thank you everyone for all of your support and I will try to answer everyone's
questions.
Yes I do have insurance thru my ex husband and it is United Healthcare. My financial issues stem from the fact that I only get SSI and that goes to take care of my household expenses.It is the extra things like hotel stays and food and gas to get to help that I have to resources left. I was wondering is there any place that helps with that. I am going to CTCA in Tulsa because it is only 4 hours from my home in so. Missouri and is supposed to be one of the best.
As to what type I have, that is where it gets interesting. I have had 5 surgeries, 42 biopsies, and 6 different diagnoses. See why I am on an emotional roller coaster. The general consensus is that it is probably some sort of B cell lymphoma due to the way it continues to grow, I have horrible sweats, itch like you wouldn't believe, and i have no energy. I continually am sick and on antibiotics.
After my last surgery I was told 70 percent of the mass was removed and chemo and radiation would finish it. Then the surgeon tells me he didn't find what he was looking for he was going back to the tumor board to see what they recommend. This was when I said enough is enough.
That was when I called CTCA. I explained what all I had been thru and what was going on they said they wanted me there right away.They provide the transportation but I still have to come up with the funds for my gas to the airport, my room, and my meals. I had to borrow 500.00 last month just to go to Barnes in St. Louis and there is no way I can do that again. I live in a small town and this has been hard on my family because with the placement of the trache our friends quit talking to us and the looks from people are asinine to say the least.
I am glad I have found somewhere where I can talk to people and have some understanding.
Again thanks for all your help.
Debbie

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Debbie,
Sorry I am not in the US and can not advise on the finacial stuff, which sounds like your current stumbling block.

Can you PM when you get a chance.
Scambuster

denistd's picture
denistd
Posts: 483
Joined: Apr 2009

Debbie, get in touch with the American Cancer Society, they have a program to help with the gas costs through American Express, i got a gas credit card for $300, not much I know but it was a godsend as I had to drive 50 miles and back everyday for radiation and chemo.ALSO TRY CANCERCARE.

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Thank you for the advice. Will call American Cancer Society in the morning. Am scheduled to fly out of Springfield for Tulsa Wed. morning. Have to pay for gas, baggage checks, room, and meals, any little bit will help. Wish me luck and will keep everyone informed.
Debbie

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

I'm thinking about you today as you leave for Tulsa. I hope you get some answers and see some progress.

I'm so sorry this has been such a long and frustrating road for you. If you lived in my neck of the woods, you wouldn't lose us as friends. We're not scared of a little thing like a trach.

debbiejeanne's picture
debbiejeanne
Posts: 2230
Joined: Jan 2010

Debbie, please give me your phone number if you don't mind. I'd like to call you. It is a shame that your friends have left you when you need them most. I cannot imagine that. You will be able to get a lot of info here and find that everyone here is willing to be your friend. Please continue to post and we will all add you to our prayers!!
God Bless,
Debbie

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

For all of you who asked for my number...417-259-4543..I am currently in Tulsa and having a ROUGH time of it not having anyone with me is not making it any easier. All of the meds have made me ill and no answers yet. I will appreciate all phone calls. Late afternoon is best as I am busy with docs until then . Feel free to call. Rich..if you see this I will be calling this evening if I can hold my head up. Thanks for all your help.
Debbie

debbiejeanne's picture
debbiejeanne
Posts: 2230
Joined: Jan 2010

Debbie, I'm sorry you are so ill and I've very sorry you are alone. I would visit if I were in your area. I'm in cincinnati, OH. Please hang in there, it will get better. I'm sending you best wishes and lots of prayers. I plan to call you this evening.
Get well and God Bless,
Debbie

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

All of you may call me 417-259-4543..I am in Tulsa trying to get help. Will appreciate all phone calls. Will keep you all posted. Right now very nauseated hoping for answers. I can usually be reached late afternoon and evenings and since I am here alone I will appreciate all phone calls. If you live in the area please feel free come by and visit me.
Debbie

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Lady4darkknight,

Your treatment center should have someone who assists with financial matters. I do know that there are groups who award grants to help pay for portions of treatment. My center's financial contactbrought that up to me. I can't remember the name of the group whose grant he hoped I'd be eligible for - I think you need to have income of under $40,000, and that's the only requirement. You should be able to call your center, and ask to speak with someone who can help you sort out the financial end of your treatment plan. Good luck with it.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I can imagine what your going threw, i was lucky,i had insurance threw my wife and still have to pay the co payments, but i thank my lucky stars i got it, My hospital in Nashville has a financial service, i am sure you have tried these, I'm currently trying for SSI and just getting started, they virtually want you to be living in a cardboard box, so we will see where this goes, my boss has taken me from full time to part time, yes...i worked throughtout my chemo and radiation like a fool, Doctors and people couldn't believe it. Thank the Good Ole USA, A Cancer victim and having to work to keep my electricity on. I've gone to part time especially due to the economics, my boss was great at first, but now, cancer being a long drawn out recovery, has worn thin, all i hear is smelling the radiation burn smell coming from my body everyday, there are days i wish i wouldn't wake up. There has to be some kind of program to get yourself on...please let me know of any postive headway. I feel for you. I only hope I continue to improve this slow and frustrating disease, myself, and recover, it's been almost a year since this started, everday is like a struggle..please keep in touch Debbie. Dennis

debbiejeanne's picture
debbiejeanne
Posts: 2230
Joined: Jan 2010

Dennis, I'm sorry you are going thru this and especially that you have days when you wish you would not have waken. I think we all have those day now and then b/c as you said, cancer and a long and drawn out recovery process. You are absolutely correct about thre good ole USA helping us financially. It is a shame what we go thru for help but yet an illegal can come here and get mediacal help for free no matter what. I hope I don't offend anyone but this is the truth. I too, pray you will fully recover.
I also appliede for SSI and it only took 5 months to be approved. It is believed that cancer patients are moved to the top of the stack. I used Bender & Bender to get mine so they dealt with the paperwork and headaches. You may want to consider them.
I will keep you in my prayers, Dennis, please take care and keep fighting.
God Bless,
Debbie

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Know the times w/you are not the best, but am wondering about your status- what the Drs. are saying, etc. And hope you are able to get things worked-out with someone the C people may be able to refer you to. U of Iowa, I'm told, houses Patients and their families in a couple places- know of a family from over 100 miles away staying at a trailor park for the duration of lung treatment, and they have a regular apartment building near the hospital for family members of surgery patients to live and sleep in. Something like that would be helpful, Deb, and you may inquire about. Seek, and you may find.

Please let us know the your status in Tulsa.

kcass

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Anybody have news about this Debbie- to get treatment in Tulsa?

kcass

debbiejeanne's picture
debbiejeanne
Posts: 2230
Joined: Jan 2010

kent, i've not heard from her. I called her about a week ago but she never returned the call. I just called her again and left her a message asking her to let her know we are worried and asked her to either post herself or have someone post for her just to let us know how she is doing. I also left her my phone number so if she calls I'll post her status.
God Bless you my friend,
debbie

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Thanks, Debbie, and please do post any news. The start can be kinda mind-blowing, so to speak, and with her having to travel and find a place to stay in Tulsa, along with the $ issues- hoping and Praying she hasn't gotten overloaded with the enormity of it all. We are here to help C people like her, and your work is much-appreciated by all, Debbie.
Thank you.

And, lady4darknight, we need to know how things are with you and Tulsa.

Believe

kcass

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

My prayers are with you, and hope you are doing okay, and just busy getting info together.
We are here for you. Please post. Love & Prayers, Patty

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