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#21115 09-17-2006 01:31 AM
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Rolf Offline OP
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Hello all my names Rolf I

#21116 09-17-2006 05:00 AM
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Hi, Rolf,
I wanted to suggest you read the journal at http://www.users.globalnet.co.uk/~raphaels/

Raph's cancer was tonsil, but his journal describing his treatment, particularly the radiation treatment, might be of interest to you.

You have a great attitude! Stay strong!
Joyce


CG to Tom dx SCC 5/06; right neck lymph nodes removed, dx right tonsil and tonsillectomy 6/06; rad and chemo started 7/06; treatment COMPLETED 9/06 33x rad; Erbitux (8x); Cisplatin (2);
#21117 09-17-2006 08:06 AM
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Hi Rolf, I'm also from England, if it helps at all I also have written and online journal of my treatment ect for cancer of the larynx, if you care to read it, it's here
http://www.nuttycrunch.co.uk/cancer/

#21118 09-17-2006 08:21 AM
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Hi Rolf:

My husband Dave is originally from Manchester, UK. You are welcome to e-mail him at [email protected] if you need the ear of a country mate who understands the NHS and has been through radiation.

Thought you might appreciate this one-when Dave had his surgery for tonsil cancer the ENT warned us his voice may be "more nasal sounding" after ward. He just laughed-what Mancunian do you know who DOESN'T sound nasal on any average day? Accent still intact and I'm still captivated by the nasal quality and his fanatic love of Manchester United.

Best Wishes,

Kim


kcdc
Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"
#21119 09-17-2006 10:10 AM
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Hi, I am the mother of a cancer patient, wife and mother of two preschoolers. She has to make the decision to have her jaw removed and most of the tongue this week. She has been fighting SCC for one year,enduring excruciating pain but unwilling to "have her face cut off" Now the pain is so bad no pain meds will touch it,her teeth are loose and falling out, she can barely swallow or talk. She may not live too much longer as she is very thin and weak. The surgery will be done at Mayo's in Pheonix if she consents. The replacement tissue will come from her leg. Can any of you tell me what she is facing in the way of recovery? Death doesn't seem to frighten her as much as this surgery. (Heaven isn't a very frightening place)Help, Please, Mom

#21120 09-17-2006 10:18 AM
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coverup, I am so sorry to read your post. Oh my, I HATE this dreaded disease. I had about 1/2 of my tongue removed, I was on morphine for quite a while. That seemed to help. You and her are in my prayers....if you wish to email me or send me a private message, I will respond....God Bless, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#21121 09-17-2006 10:20 AM
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Rolf, I LOVE your attitude! You keep fighting! God Bless, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#21122 09-17-2006 11:54 AM
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Coverup:
We had this situation in the last few years on the board with another young cancer patient (in her 20's) with a young child who was also reluctant to undergo the procedure needed to save her life. Most of us who have been here awhile followed the story (OCF members will remember Rosemary's daughter) and were stunned that she didn't opt for lifesaving treatment right away. I recall Rosemary letting us know much further in the process that her daughter was in a way not able to see herself as potentially fallible due to her young age. She also feared her appearance would change and she found this very troubling and frightening.

Unfortunately, Rosemary's daughter did succumb to the cancer and Rosemary remained a force here on the board as an advocate for early tx at a cancer center.

Is there a cancer support network at Mayo that perhaps can pair another young patient with your daughter to talk to? It may be that sharing the perspective of another young person will help. Most cancer centers also have pain management teams-it would be good to consult with one of them NOW as it may be easier to make a clear decision without the fuzzy headedness of intense pain.

Does anyone on the board know if Rosie has an active e-mail? Maybe she would be a good contact for Coverup?

Kim


kcdc
Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"
#21123 09-17-2006 02:42 PM
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Coverup. Search the members link at the top of the board entry page for Minnie. She has been through this procedure, is healthy, happy, and well afterwards, and still a beautiful woman on the inside and out. You will be able to PM ( private message) her through the board or get her email address fom the little Rolodex card picture right next to hwer name. Wait now that I have said that, I'll just get it for you, but at least you know how to do this in the future ( [email protected]) Time is more imporatnt right now than anything else. At this stage of things every day counts.


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.
#21124 09-18-2006 03:42 AM
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Rolf Offline OP
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A big thank you to all for your responses there great. I


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