#29605 11-14-2007 07:17 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | WOW! WOW! WOW! I am sorry Brian that you had to repeat the rules again. I will PM or email personal stuff that MIGHT offend someone....WOW, can't we just all get along and love one another? I tried to pm you but your box was full. Sincerely, 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---
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#29606 11-14-2007 08:31 AM | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Carol- so so sorry to hear about the new primary. Hopefully the doctors will have a plan of attack for you to kill this beast once and for all for you. You are facing this new battle very very bravely.
What was your first treatment surgery and radiation? Any chemo then?
The reinstatement of the rules were really a bit harsh. OUCH. You didn't need to be reprimanded so strongly in your time of adversity!
Let us all not forget how very very vulnerable people are here in thier time of stress over thier illness.
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
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#29607 11-14-2007 08:52 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Carol--I just wish you ALL the best--a lot of love and caring, and I know that, after your initial post, many will have also put you on their prayer lists!
Brenda x
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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#29608 11-14-2007 10:43 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Quote-"keep in mind that our words don't always come out exactly the way we meant them to, and occasional misunderstandings are possible even when no criticism is intended. This is especially true on the Internet where you can't see the person's face, look in their eyes, and hear their tone of voice."
Mmmmm
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#29609 11-14-2007 11:51 AM | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | MisKate - you are off base. No one reprimanded Carol, and she and I have communicated by email in a private way about her situation. She was the first poster in the thread, and others posted (for the most part) in the same religious tone when they wanted to, as her original posting, they offered her prayers. That is all appropriate, and how it is supposed to work.
But clearly some people didn't even know that we had a rule about religion in postings, why, and how it came to be. So for their edification, I had to restate things. It had nothing to do with Carol. It had to do with Billy who stated he didn't know we had a rule about this. It is easier to copy and paste the rules again than try to explain everything in a typed message for the umpteenth time from scratch. Since that raised an eyebrow, here I am yet again explaining things.
I wish there didn't have to be any rules, but we tried that and it didn't work. We had people pitching herbal cures, cigars of all things, Jesus as the only way out of this, We had a Buddhist being told that as a non believer in Jesus she was going to go to hell, and so much more. The dialogs got personal and hurtful and they had to be deleted and people banned from posting. The world is not full of totally balanced people, who will always behave in a manner which does not hurt others physically or emotionally. Luckily for me I am not the only one that watches these things on the board, edits or deletes things, or bans individuals. You would be surprised at the amount of rubbish like cigarette promotions that end on the board overnight on a regular basis. Someone has to clean all that crap out. Someone has to the sheriff, and someone has to catch shit for having altered someone
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.
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#29610 11-14-2007 12:08 PM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | So, to continue--I have just copied and pasted my post! Hope this can take Carol's post forward for Carol, and all other posters/supporters.
Carol--I just wish you ALL the best--a lot of love and caring, and I know that, after your initial post, many will have also put you on their prayer lists!
Brenda x
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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#29611 11-14-2007 12:10 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Carol,
Over the past 4 years as we have become not only members of the Club Nobody Wants to Join but friends and brothers and sisters in faith, I want you to know that we have shared well wishes, positive thoughts and prayers for each other and many we have known that have either specificially asked for our prayers or mentioned how important their faith was to them. I only mention prayer and provide Christian fellowship with those that clearly mention it before I do. For those that never mention it, I purposely do not mention it either.
I want you to know that I am praying fervently for you that you will be provided with His comfort and peace and that He will surround your entire circle of friends and family especially during these next very stressful days. Of course, you may email me or PM me if there is anything I can do for you.
As Marica so eloquently states, "May your God go with you". May I add, my our God be with you always and provide you with strength as He provides your medical team with the guidance and wisdom to determine the absolute best possible course of action and treatment for you.
YBIC,
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
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#29612 11-14-2007 01:56 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Love you Carol and hope your appointment today went well.
A little back up for Brian: I've been here long enough to know what he's trying to express. So let's not shoot the messenger! Over the years there have been people on here that couldn't post without it being wrapped around what THEY believed in. All Brian is asking is please respond in kind with the poster. Carol obviously is a devout Christian, so we all feel free to respond in kind. Same with me.
So now let's carry on helping Carol and her new fight. Thanks for the update Brian.
Take care,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#29613 11-14-2007 02:36 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Okay, now that is out there and hopefully settled, I will be having surgery on December 14th. My doctor, I absolutely love him, too by the way, will perform the surgery in the am and then leave in the evening for his preplanned trip to Wales. His associate will take care of me for the remainder of time in hospital which is looking to be about 2 weeks.....I have a petscan tomorrow, hoping nothing else shows up. The plan is to remove the scc of the left palate, take muscle from right arm to rebuild flap for left palate, they will have to split my jaw in order to get to the scc, it is very awkward in location, so they cannot get around that.....guess I will look like the Bride of Frankenstein for a while..whatever, I want the cancer out! Thanks for caring, friends.....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---
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#29614 11-14-2007 03:34 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Carol,
Now that you have your treatment plan, you should have a little peace of mind. Not knowing what is going to happen is certainly very stressful. I hope you get good results from your petscan tomorrow.
You will be in my thoughts through the coming days and weeks and you have my continued love and support.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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