#12855 11-12-2007 04:53 AM | 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 | Minnie and Carol,
I am truly sorry to hear of what both of you are dealing with right now. We all learned years ago that there is nothing easy about this horrible beast. I met someone recently that was 7 years out and suddenly is faced with the same thing. It's just a reminder to all of us that we must live TODAY. There is no guarentee for tomorrow but each day wasted worrying is one we will never get back. I try to start my day rejoicing that my eyes opened and I get yet another stab at it! It's just a darn shame that I can't keep that going the entire day.
Know that you both are in my heart and I pray daily that you will be provided with the comfort you need as well as for His love to fill the hearts of your entire circle of family and friends.
May miracles and blessings fall in your path.
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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#12856 11-12-2007 06:32 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Thank you Ed, I really appreciate your kinds words.....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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#12857 11-12-2007 07:42 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Minnie,
Every time I post, you see someone who was 'kicked in the teeth again' 4 years out and managed to survive to post another day. Your beating this a second time will be an inspiration to others so post away. We are here to help.
Carol,
Sorry you too have to deal with this again. The only good thing is we usually catch these early on the second time so treatment may not be so drastic. Keep us posted when you have more info.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#12858 11-12-2007 10:39 AM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Please , dont ever be afraid that YOU are scaring us ..it is not you ..it is this disease and if it was not you on here saying it was back it would be someone else.
Everyday you or anyone makes it through is an inspiration to someone . We all know that depression , hurt and anger are a part of this.
We all run the risk of facing it again ..we all walk in the same shoes.....sometimes the one shoe just falls. and we never know who that will happen to .. So let us help you and let us PUT THAT SHOE BACK ON !!! You have helped so many . I know the fears you speak of and the sleepless nights and the what if's and how do I tell them and It would be easier if ..and I cant go because... I am sure most of us do ..They are the worst feelings in the world. but we understand them , so let us Help you through them , I think most people want to know the TRuth about this disease and the HUMAN side of it , no MAtter how scary it is. We are here for each other ..that is why we sign in everyday and read and cry and write !!
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#12859 11-12-2007 04:30 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Minnie, if we live to be 95 and crotchety old women, we will still think our daughters can't do it without us. Since there is alot of time between now and then- take some time out for yourself  - it is obvious that you have taught them how to survive. And one very serious observation here- you are NOT weak, you are sick and need to direct your energies to getting well. This is not a stubbed toe you are dealing with. It goes without saying that your family is frantic with worry for you. Since we are all believers here of one day at a time- I hope you have assigned everyone some part of the Thanksgiving preparations and you will just sit back and rest and enjoy the day. Amy in Oz
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#12860 11-12-2007 06:27 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | You are very right Amy, this isn't a stubbed toe and it's not going to get better overnight. I do feel better today, I have gained three pounds just in this past three days, which is remarkable. And I fully believe it's because I took the time to rest and while sitting there, took in more feedings than usual. Lesson well learned and I told my husband to watch out, I'll probably weigh 250 in a month! He never knows how to take my humor, bless him.
Going to bed, have a CAT scan in the morning for this lymphnode in my neck.
Love,
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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#12861 11-13-2007 02:01 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Minnie, I am thinking of you and praying for good results from the cat scan.....Love, 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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#12862 11-13-2007 02:57 AM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | More prayers coming from down South. You sure do have a full plate these days, don't you! I pray that this CT will give you good news and that one of your worries will disappear.
XOX
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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