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#38032 01-10-2005 02:40 PM
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Brenda & David,

This disease keeps everyone guessing -- I was diagnosed with a stage I tumor 18 months ago and have had no recurrences and you guys have had 4 to deal with. I will pray for you both. And yes I miss spell check.

Barb


SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
#38033 01-10-2005 02:48 PM
Joined: May 2002
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Brenda and Dave,
I too read your post earlier today and was too upset respond. Your earlier posts about Dave's severe pain had me think it might again be another reoccurence, but I assumed the Drs would be on top of it was. After all your complaints of pain, how they missed something large enough that is now unoperable mystifies me.

I truly hope his next treatment plan is a success and this disease can finally be arrested. Please try to keep your positive spirit and do not give up hope. We are all sending positive energy and prayers your way. Let's beat this thing!!!!

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
#38034 01-11-2005 09:31 AM
Joined: Dec 2003
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Brenda,

I am truly sorry to hear of the newly diagnosed challenges facing you and your beloved husband, David. I am thankful that the medical team has the pain somewhat under control now. David is so fortunate to have you by his side and I speak for all of us that had our "stronger half" with us through this journey.

You are so right about the so little that is known about fighting this horrible cancer. Many more people have lost the battle with oral cancer than cervical cancer and prostrate cancer, for example, but we hear so much more and so the results of so much more research for both of these. As I pray for God to provide comfort and peace to you and David, to wrap His healing arms around both of you right now, to provide His wisdom and guidance to David's medical team to provide the best possible treatment plan, I will also pray for His wisdom and guidance to find more weapons to battle oral cancer.

With love,

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
#38035 01-11-2005 12:25 PM
Joined: May 2003
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Dear Brenda and David
Like Eileen I was also too upset to answer your post at first reading.
It`s just not fair! Childish I know but it`s how I feel. I know that as caregivers we are not experiencing the physical pain, but God it hurts.
My Mantra was an Emmerson quote.
" What lies behind us and what lies before us are tiny matters compared to what lies within us. "
Hang in there guys, lots of positive vibes coming your way.

Love
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#38036 01-11-2005 04:12 PM
Joined: Jul 2003
Posts: 1,163
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Nice quote Marcica!! Live for today!!

Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#38037 01-12-2005 05:41 AM
Joined: Jan 2004
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I like that quote, too, thanks Marcia. Yesterday I had my yearly mammo and chest x-ray. Technician asked why I was having the chest x-ray, told her of the oral cancer. She was really taken back, and asked if I smoked or chewed (tobacco I assume), anyway, to make a long story short, there were all kinds of brochures for breast cancer and other types of cancer, NOTHING for oral cancer. I will drop off one of our informative packets and hope they display it!


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---
#38038 01-12-2005 06:20 AM
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Brenda and David
MY PRAYERS ARE WITH YOU BOTH.


JOAN
#38039 01-12-2005 11:21 AM
Joined: Nov 2004
Posts: 90
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Dear Brenda,

I am so sorry to hear the news about David. I pray that in his case, the "fourth time will be the charm". I just hate this awful disease! I like you am the caregiver/wife to my husband Ron, who just completed radiation treatments on his throat about a month and a half ago. So we have just started the "watchful waiting" and it scares the heck out of me. I'm so afraid the same thing is going to happen to Ron that's happening to David. I really admire your strength and courage, people like you help me to be stronger for this fight we are in the midst of. I remember reading one time, "God will either lighten your load or strengthen your back". You obviously have a strong back right now, here's praying for a lighter load real soon!!!

Shelley


Caregiver to husband, Ron. Throat cancer, Stage II. No Chemo or Surgery. Completed 35 Radiation Treatments in November 2004.
#38040 01-14-2005 07:56 PM
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Hello SHelley. We are neighbors. My mom is in Agoura Hills, the one suffering with this terrible disease. Sorry Brenda for what you are going through. I too am dealing with this as my mom has now suffered her THIRD recurrance. And now, they are telling her that nothing can be done. SHe has the cancer in her jaw bone. Had 3 surgeries and 6 weeks of daily radiation to hear that she has the tumor likely back in her jaw bone. They are saying nothing can be done. Does anyone know of anything, homeopathic or otherwise? I do not want to give up this battle. She is 65 years old and lost over 70 pounds or so. She cant eat or speak. She is continuous pain and takes the liquid morphine. The odd thing is that she had this weird infection that kept oozing out of her chin and her lips. Has nayone heard of this?

God Bless you all and you are all in my prayers.
Stephany


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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