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#77543 07-26-2008 11:40 AM
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Hello,
My heart is so saddened today to learn about the death of Randy
Pausch. Many of you may have heard about him, but I checked on him every day. He so inspired me with his strenght, wisdom and positive attitude. He really fought and I believe made some progress on this
stupid cancer stuff. Whenever I feel scared and all alone, I think of him still and he gives me strenth, even now. I am going to buy his book, "the Last lecture" which has a lot more in it than his lecture. This should be a very inspirational book, especially for those of us that have new 'Normals" to get used to.
I am just sad and wanted to share it with someone else that would understand. Sorry to rant on and on.
Enjoy this and every day,
Debbie


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
peace4uall #77544 07-26-2008 11:46 AM
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I am saddened as well..I know his precious family will miss him.

Tears, Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
debandbill #77546 07-26-2008 03:03 PM
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If you want to see his lecture that day, it is on TED.com one of my favorite websites. He lived the time he had fully. He did what he could do, did not obsess about the things he could not control, and stayed focused on what was important through his journey. After his terminal diagnosis, he lived very much in the moment, and that lesson alone is something we can all learn from. The book and the lecture are different, and I think they are both worth a look see. Diane Sawyer told me she was doing a special in the next week on his life, and you should all look for it in your area.

Not to change the important subject here, but for those of you that have an appetite for learning. ted.com is the best. As an example, search for a piece call crow vending machine.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #77560 07-26-2008 08:47 PM
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Excellent web site!
M


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Markus #77576 07-27-2008 12:12 PM
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There are some recorded interviews on ABC newsite with both him
and his wife. I lost my first husband to cancer and we both knew it was going to happen for a long time. It is a horrible thing to life with and I had no children at the time. I admire her as much
as him.

Check those out, they are priceless for us to see.
I am just having a hard time with all my sadness for this family.
It is not fair, there just has to be a cure here. I cannot believe
there is no better things for us than there are in this day and age.
Do you trust the pharmaceuitcal people. I think it is being kept from us and it makes me so mad. I know there is quite a bit being kept from us.
If anyone greives for him as I do, feel free to Pm me. I need to talk about it.
Thanks for listening and for the website.
Debbie


Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
peace4uall #77603 07-27-2008 09:39 PM
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Everyone is allowed to vent here. But your statement is an urban myth that has no basis in facts. I know too many researchers in the world of cancer. Hundreds of them are working in earnest to find the keys to this disease. Thousands world wide. It is unlikely that with the thousands of honest researchers at institutions all over the country and world working on this problem, that the solution is being kept form us. Do you think there is collusion between our country and researchers in France, the UK, Russia, and elsewhere? This is entirely illogical. When you consider the costs to the government for this disease, the motivation isn't there for this highly unlikely bit of urban myth. To insinuate that these many researchers are keeping us in the dark and not revealing the big picture to us, is to do severe disservice to good people. Please keep those kinds of statements off the boards and confined to your private PM's or elsewhere if you can find someone to believe them.

Has our government lied to us? Lots of times, getting into this God forsaken mess in Iraq, the Gulf of Tonken, the assassination of Diem, Alande, and hundreds more smaller lies. We are living under one of the least transparent administrations in the history of our country. But conspiracy theories about pharma companies withholding a cure for cancer for the benefit of those treating it, is just not plausible, given the world wide involvement that would have to take place. This is the tone and voice of frustration and not logic.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #77606 07-27-2008 10:37 PM
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Thank you, Brian, for this. As a 17-year survivor of Non-Hodgkins lymphoma, a 3-year survivor of borderline ovarian cancer, and a 3-month survivor of SCC of the tongue, I can't tell you how crazy it makes me to hear people say that the cure is being kept from me by dastardly researchers and doctors in the name of greed. I have met some of the most wonderful, compassionate and caring people in, I believe, all the world who would do anything to erase this scourge of cancer from my life. To accuse them of less that that, is outrageous.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
Brian Hill #77607 07-27-2008 11:14 PM
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Debbie,
the unknown is frightening and the mind is ready to fill in blanks with monsters etc. These feelings are not based on reality but on frustration.
If there were miracle cures around it would be known. There is a LOT of hype and many drugs that look good initially can never be given to a human because they are too dangerous. Drug development takes a lot of time and money, so it inconceivable that a miracle drug would not be marketed. A pharmaceutical company just cannot be that stupid. In addition, the basic research is freely available. There is no such thing as pharmaceutical people... these are companies that employ researchers, technicians, secretaries, lawyers, sales people, janitors. etc..... ultimately people just like you and me. It is not a cabal!
Look at it another way, do cancer researcher get cancer? Yes they do (!) and they all of a sudden find themselves in a room with a bunch of other people who look really sick and are also hooked up to cisplatin etc. just like anybody else (with a treatment plan essentially just like anybody else). My professional speciality is DNA structure and repair which is of course related to cancer. This however, did not help me one damn thing (basic research). I had a pretty good idea what was going on during my treatment which made the experience less frightening (i.e. IMRT, chemo etc). Even so SNAFUS happen as was the case with Erbitux. There are also other MO's I know who had H&N cancer and who were treated similarly.

I can appreciate your frustration but there is no conspiracy here.



M






















Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Markus #77611 07-28-2008 05:25 AM
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Nodding in agreement that there is no conspiracy to hide a cure for cancer by the pharamceutical folks. Not that they don't have profit as their basic motive, but a conspiracy like that would just never work for all the reasons Brian mentioned, as well as because the researchers themselves, that the pharma companies rely on, don't have profit as a basic motive-they are genuinely interested in making breakthroughs.

Brian, I love Ted.com! I am planning on using some of the talks on there in online classes I teach this fall. It's an incredible resource.

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"
peace4uall #77619 07-28-2008 08:12 AM
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Randy lives on as inspiration for all of us, though I too grieve for his family. He hung in there so much longer than predicted and put every innovation possible to work in his life and to stave off his decline.

Two months ago our family was attending son Gavin's graduation at Carnegie Mellon Univ., and we were incredibly blessed by a huge surprise: Randy arrived, in person, to take the podium and use his day's entire energy to urge us forward in life!! For three glorious, heartfelt minutes, he bestowed a timeless gift upon us. For Mother's Day, Gavin gave me Randy's book, which was distributed on campus.

How lucky we ALL are to have witnessed through every medium, how totally unselfish love transforms our lives.


Non-smoker non-drinker, 50 when diagnosed 9/11/06 stage IV scc of oropharnyx, malignant lymph nodes both sides of neck. Cause=HPV16. Daily chemo & daily IMRT for 7 weeks. In 2 clinical trials at Johns Hopkins, good results. Peg tube out March 07. Update September 2014: gratefully in good health!
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