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they've given up on Shordy's Dad


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Well everyone, I guess they've given up on my Dad. He went for his CT results today and they told him that they've exhausted all of their chemo treatments and he's not responded to any of them. His tumor has grown some and also, there are "a bunch" more spots on his liver too. So, they mentioned pain management and then hospice. Plus they'll give him a pill to try and help his liver, but they said that he has a 1 in 10 chance of it doing any good. He takes 1 pill one day then 2 the next, rotates them like that, they're $1,000 for 15 of them. He's going to try them. So Daddy left the office today with the only outlook of hospice...how sad for us all. I can't imagine what going through his mind right now, and my Stepmom's too. I just hate this for them. I just don't know what to do. A couple weeks ago I had to go through the horrific experience of having to euthanize my 18 year old "baby" canine that is, I've had him since the day he was born. I've cried every day, this is so hard, I miss him so bad, when it rains it just pours! Thanks for listening, Love, Shordy

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Oh Shordy,

I'm so sorry. I've been thinking about you guys and wondering about you and your dad. Looks like it's a wait and see if these news pills are going to work. I pray that they will. Hang in there and I'll be thinking and praying for you all.

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Shordy,

I am so sorry to hear this about your dad. I just love the pic of the two of you.

I hope the pills work for your dad.

In the last day or two they mentioned a new treatment that wasn't chemo or radiation for cancer. It think they said it worked especially well on the liver. See if you can check the website for Good Morning America for June 2 or 3rd.

I will say a prayer for you guys, Shelly

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Dont throw in the towel just yet. Look up at clinical trials and other alternative treatments. My dad has been on hospice for the past 7 weeks. During this time we have looked at other options, although we havent found any clinical trials yet, we are still giving additional supplements. good luck

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The other day they were talking about RFA radiofrequency ablation. How well it works on tumors especially liver tumors. It just cooks the tumor by sound waves without hurting surrounding tissues .

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Dear Shordy,

Please don't give up hope for your dad. maybe that RFA that everyone is mentioning might be a good option for him - also, give the pills some time to work, also the clinical trials can be very helpful. please, give all these your consideration. I rootin' for you. :)

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Shordy,

Wondered how you and your dad were doing. I can't imagine hearing that there is nothing more to be done. And if they tell me that I won't stop looking for other options. Shannon wouldn't accept this from the Mayo Clinic and took Mike to Tulsa. He is doing better and starting treatment soon. I pray you find other alternatives for your dear, dear dad.

My prayers are with you also as I know you must feel depleted and depressed. Continue to update us and come here for support.

Blessings to you,

Peg

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OHH, Shordy, I'm so sorry to hears this news, my prayers go with you and your dad.

I know your dads been through so much, but maybe its time for second opinon, again wishing you well and praying real hard.

God bless and be well

Bobmc NSCLC - stage IIB - left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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Katie, Shelly, rayroy, Rickey, Donna, Karma, Don, Joanie, David, hopeful, Deb, Peg, Bob & Tiny, thanks SO very much for your replies, thoughts & prayers. I'm always so surprised to see all the posts, you're all so thoughtful and I thank you. I had a good conversation with Daddy yesterday, I really hadn't talked to him much since the loss of my baby Bear. He actually said that he thought the doctor was "dragging his feet." So, maybe that'll encourage him to get another second opinion. I've been looking at this "Body Radiosurgery." Does anyone have any experiernce with that? It sounds wonderful. I see that there are suppose to be 4 doctors in the U.S. that are trained to do that, one in Staten Island, one in Houston and possibly Indiana University. It would be wonderful if they did it in Indianapolis, that's a drive from here & not a plane flight, but I'd be more than glad to take him to anywhere in the world to get help. I sorta hit him up with the idea of travelling to get help but he didn't say anything. Like I had said they've got him on Vepesid and it cost him $1,035 for 10 days worth of pills that isn't covered by medicare. He isn't even sure how long he'll have to take them, but I did find them cheaper elsewhere. If anyone has any info on this Body Radiosurgery I'd love to know about it. All I know about it is what I've read from the net. I've always said I'd NEVER fly, but my Husband knew yesterday when I mentioned it that I'd fly to the moon if it would help him. Thanks to you all for the support, it's more appreciated than you'll ever know. Lots of love, Shordy

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Shordy,

I am so sorry to hear the news. But I am hoping that you won't give up. Don't believe the doctors when they say there is nothing else to do. That just means there is nothing else they know how to do, not that there isn't something else out there.

I've heard wonderful things about Radiofrequecy Abolation. I think that is what you are talking about. It is using radio waves to target tumors with minimal damage to surrounding tissue. Supposedly it works really well on soft tissues such as the liver. I've been keeping it in mind to speak to my husband's doctor about it on our next visit.

We were also informed of a clinical trial that is being done in England (I know, it's a bit of a travel, but if it works then I'd go anywhere). We were told if chemo was not working for Keith, that we should go to the Mayo clinic, and they would test him to see if he has ostreotide receptor sites on this tumors. Then if he does, the clinical trial in England is attaching radioactive material to hormones that go directly to the tumor receptor sites. It is like radiation directly on the tumor and not affecting any other tissue. There is a lot of hope out there for this trial.

Another thing to look into is the Cancer Treatment Centers of America, where Shannon and Mike went. He was told there were no more options, and when they went there, look what they said, there is HOPE.

Don't throw in the towel yet. There is still options, hold onto your hope and faith.

In the mean time, I am praying loud and hard for you.

Carleen

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Carleen, thanks for the reply. That sounds like a great thing they're doing in England. I'm going to go with Daddy on Tuesday to his oncologist and ask him a few things, I have permission :lol: The procedure I was referring to is Body Radiosurgery, but I'm also going to ask about the RFA too. We're not giving up and now that Daddy's letting me help him again it feels so good, there for a while he really shut me out and now I think he's changed his mind, I think he'd take any kind of help from anyone right now. Thanks again so much for your support, it's so appreciated. You guys don't know how much you all keep me going sometimes. You are all such a big help in so many ways. Love to you all, Shordy...I'll keep you updated on his appt. Tuesday

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Shordy -

I don't know where you are at...but if Indy is a drive away from you...there is a Cancer Treatment Center of America in Goshen, IN.

Also one in Zion IL. I would highly recommend you check out there website at www.cancercenter.com - and chat with one of the oncology specialists.

They are so UNBELIEVABLY helpful and FAST responding. CTCA may not be an option for your dad....but I would at least check it out.

Hugs,

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Shordy, regarding your fathers expences for medication, since Iressa was approved my parents were facing spending $1200.00 for a three month supply if they brought a perscription to a pharmacy. But with my moms insurance (retired government employee) the doctor will call in the perscription to her INSURANCE COMPANY'S percription dept. and they will mail them a three month supply for only $35.00 a month!!! It may pay to phone your dads insurance co. and see if they have this type of program. I hope this was of some help. Good luck in checking out RFA and the body radiosurgery, try to keep us informed. Keeping you in my thoughts and prayers, take care, deb

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