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#44286 12-06-2004 03:31 AM
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Tonya Offline OP
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Thanks again. I whole heartedly agree with you, Danny G., it feels like they are saying, "You aren't important enough to waste our time on" each time they turn you away. My brother has great insurance, so the money issue is not the problem. We are hoping to hear from them today or tomorrow. At first I was excited, because surely now that he has a fighting chance they will take him. But I was disheartened to see a post from Danny Boy about them not taking him because he was improving where he was. Is this still the situation Danny Boy? I hope you have managed to break the code and get in. Meanwhile, Danny G. mention Sloan Kettering. What other "breaking edge" centers can anyone recommend?
Thanks,
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44287 12-06-2004 09:27 AM
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Just a thought: Maybe what Anderson Cancer center is saying is "You are getting the best treatment we know of where you are right now," or "You are getting state of the art treatment." I know little about Anderson and I only offer this because there are wonderful doctors who keep up on the latest developments in their field and they may be able to offer the most recent, state-of-the-art treatment. Any new trials of experimental drugs are probably targeting certain people, for example those who are Stage III but not Stage IV with tonsil cancer. Tonya's brother may not fit their research protocol. This doesn't make him any less important as a human being.

I offer this speculation because I suspect that even the big cancer centers don't have answers for all the difficult, likely-to-be terminal cases. Even with great insurance they may not be able to do anything more than his current doctors. - Candace


Sister of guy w/base of tongue cancer, Stage IV, Dx 4/03, finished Tx 9/03
#44288 12-06-2004 09:57 AM
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Tonya Offline OP
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Candace,
I'm not saying they should take him because he has good insurance, just that there is not a financial reason for them to turn him away, so it must be medical or some other reason. Originally his doctor said, "We're doing everything for him here that they can do in Houston." In fact, he said it several times. Now that David has responded so well the same doctor said, "You need to go to Houston. They're five years ahead of us down there." Hence the frustration. My brother just wants a second opinion and his doctor said if he was going anywhere to go to Houston. David said even if MD Anderson had been the ones to give the original diagnosis he would want to seek a second opinion somewhere. Anyway, maybe we will have our answer soon.


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44289 12-06-2004 10:25 AM
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Tonya, if MD Anderson doesn't work out, you might want to try the Sylvester Comprehensive Cancer Center in Miami. I was treated there as a Stage IV patient and have been given a clean bill of health, at least so far (less than a year). Tower is being treated there now and it is a first rate cancer treatment center. There is also free rooms available at the center, just a short walk from the radiation treatment department. Check with the social services department. Pray it will all work out for you.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#44290 12-08-2004 08:07 AM
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Tonya,

I know I mention the Simmons Comprehensive Cancer Center at University of Texas Southwestern Medical School here in Dallas but I want to add a new plug. Yesterday it was announced on the news that they are completing the process of becoming a National Comprehensive Cancer Network member! Many of the doctors were previously at MD Anderson which is also part of the University of Texas system. I would be glad to do anything to help make it happen and I would certainly be willing to go with y'all if it helps. I know we are as close as anywhere in the country for you.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#44291 12-08-2004 10:27 AM
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Tonya,
this is precisely why we always recommend to people here to seek out a comprehensive cancer center initially. I hate hearing stuff like "They're five years ahead of us down there". That "five years" is a world of difference in the state of the art perspective on curative methodology. We need every weapon in the arsenal for this fight.

This is not meant to be critical of the path you took, only to emphasize to others why seeking the best possible treatment should be strongly considered in the very beginning.

Here are 2 resources for comprehensive cancer centers nationwide:

http://cis.nci.nih.gov/fact/1_2.htm

http://www.nccn.org/


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)
#44292 12-09-2004 05:42 AM
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Tonya Offline OP
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Kirk,
Thank you for the recommendation. I will visit their website and check it out.

Ed,
Thank you. I may be calling on you. I spoke with Houston this morning and they finally have all the test results needed and are sending them over to a doctor to look at. Cross you fingers. If we can't get in I will definately be contacting you.

Gary,
I did not take your comments as crital. I wanted him at a better place from the get-go, but after being cautioned by the nursed and doctors to let he and his wife make the decisions I backed off.

To anyone just diagnosed with oral cancer - please get to a solid cancer center now - before you have any radiation, chemo or surgery. It seems almost impossible to get in after receiving treatment elsewhere. It may be further to travel, less convenient and even more expensive if you don't know anyone to stay with- but push that aside. This is your life and you cannot limit it by compromising your medical care - no matter how much you try to rationalize it, like we did.


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44293 12-13-2004 04:54 AM
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Posts: 153
Tonya Offline OP
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Update:
MD Anderson called late Thursday and will see David tomorrow (Tuesday). We are flying down today. I can't explain the emotions I'm feeling right now. Relief, excitement, sadness, everything at once. Wish us luck!
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#44294 12-13-2004 09:23 AM
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Tonya,

WOOHOO! I am hoping some new and more experienced eyes reviewing everything and seeing David will give him the best possible treatment plan to battle this beast. I will be thinking of him on Tuesday especially.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#44295 12-13-2004 07:03 PM
Joined: Nov 2004
Posts: 104
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Posts: 104
Tonya,

I'm with Ed, and wish David not just luck but all the positive vibes that we can send his way.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

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