#33356 04-22-2004 06:50 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Sharon-
Bummer.. I will add you to my growing prayer list and you too Ed. Sometimes it is hard to look up when your heart is heavy with fear. That's what we are here for....to hold you up! Know we are all out here with you in this fight! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#33357 04-23-2004 12:36 PM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Wow! Sharon, my heart really goes out to you. I'm in the same situation, but mine is for sure cancer. I am done with treatment, I am so tired of this. I have been dealing with leukoplakia for about 15 years, and have never smoked. It finally turned to the dark side 12/02, reoccurred 7/03, and 4/04. My cancer is really agressive.
I will pray that yours is not.
I didn't know about your cough Ed. It could be from all the high winds here in Dallas. Love this spring!
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#33358 04-23-2004 03:59 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 | I just found out my sister-in-law has leukoplakia lasered off of her tongue a couple of weeks ago and the oral surgeon told her to not worry about it. She emailed me the path report and it clearly said "dysplasia, mild, with hyperkeratosis" and recommended removing any lesion that was not removed and very close long term follow up. That seems a bit more than don't worry about it. I know I am a bit paranoid but I pushed her towards seeing an ENT that has significant experience treating oral cancer for follow up and a second opinion. My fear is that they did not confirm clear margins and don't have the required knowledge to properly diagnose her. Anyway, she has an appointment Monday to at least calm my fears.
I'm sure my cough is just some of the bugs going around here. I hope I didn't worry anybody.
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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#33359 04-24-2004 10:10 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Ed,
This is just how my cancer started. She should definately seek a second opinion and seek something preventative. I tried vitamin A for about 2 years, but that didn't help. I think there are some other vitamin A derivitives like Accutain, but she can not get pregnant. I think MDACC has something. Brett may know about it too.
Let us know the update.
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#33360 04-24-2004 07:40 PM | Joined: Dec 2003 Posts: 47 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Dec 2003 Posts: 47 | Sharon & Ed...Please know you are ALWAYS in my prayers... as so many have been answered now I don't stop praying! I use it like Don uses his nurse button...Need some help? Say a prayer (It works better than the nurse button!)
Caretaker/Longtime Girlfriend of Don. Dx 10/31/03 SCC Stage IV T2N3bMO right tonsil/tongue base. 35 IMRT w/8 Chemos,Biopsy 4/5/4 STILL pos. Radical rightside 4/12/4 Reoccurred late August 04 God took his hand from me November 23rd, 2004
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#33361 05-07-2004 03:15 AM | Joined: Sep 2003 Posts: 30 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2003 Posts: 30 | Hi Everyone,
Thank you so much for all your prayers. Yesterday I got confirmation about the lung biopsy and surprise surprise it is Squamous Cell Carcinoma, same as my tongue and neck. There is a big mass on my right lung and a tiny mass on my left lung. So I am being sent for a bunch of tests to determine if the cancer has spread anywhere else. I have a bone scan next Thursday, a CT scan of abdomen next Saturday and waiting to hear about the date for a brain MRI.
If all the tests show the cancer has not spread, they will operate on both lungs since I am only 41 and in good shape. If they do find something, they will not operate.
So now I am hoping for a lung operation, Wow, what a thing to hope for!
In March I started a course to be a Registered Holistic Nutritionist. We just finished Anatomy and Physiology which was interesting, but now we are into Preventative Nutrition and it is very difficult for me to sit there and listen when they talk about cancer stuff. I am thinking of quitting school, it is too hard listening to all that now.
Love Sharon
Right Radical Neck Disection 2/02, 7 wks Rad. rgt side 04/03, 15% of tongue removed 08/03, Lung Met 05/04, lung surgery removed 8 nodules and 4 lymph nodes in chest all SCC
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#33362 05-07-2004 04:03 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | Sharon,
We are all praying for the best news possible under the circumstances. As Helen said, you're not alone on this road.
I'm stealing from Dee's sign off and sending much love and many hugs,
Sabrina | | |
#33363 05-07-2004 04:04 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Sharon-
I am so sorry to hear those results. My heart and prayers go out to you and your family. We will all hope for more negative results with you, too! Don't you give up hope! We are in this with you! Love - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#33364 05-07-2004 04:20 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Dearest Sharon...I am so sorry to hear those results. I am praying for lung surgery for you and all will be fine....At times like these, I wish we lived closer and could meet up face to face!!!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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#33365 05-07-2004 04:25 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Sharon
right lady.. you stay strong and positive now.. we both have to get sorted for this reunion..I have made it my aim to be there so want to see you there too..
prayers love and big hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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