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#7523 05-11-2006 03:32 AM
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Hi Everyone,
I havent posted in a while, but I have been visiting this site everyday for support and updates on everyone. I just wanted to update everyone on Charlie. Well, Charlie fininshed his treatment for Stage IV SCC Larynx Cancer on April 7th. The doctor said that the vocal cord that was paralized from the cancer has started moving. The doctors said that they are optimistic. He has started eating thru the mouth- he has soup, pudding, and even (once) pizza! He still eats thru the PEG tube at night while he is sleeping- he uses a Kangaroo pump. He has good days and bad days, but for the most part- they are good days. Maybe he is doing so well because he is young (only 30 years old) but there is something that must be said for power of love. It helps us thru the bad days and makes to good days great. I am terribly nervous and scared for the PET and CT scan, does anyone have any advice for getting thru? I have planned our wedding- just need to know he is ok to put a deposit down on the date!
Thank you everyone for your inspiration, caring, and support.


Delia- Caregiver and fiancee to Charlie ,age 30,(SCC of Larnyx-Stage IV) chemotherapy and radiation- no surgery finished tx:4/7/06 SURVIVIOR!
#7524 05-11-2006 05:08 AM
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I'm so glad Charlie is doing well. There seem to be so many more cases of young people getting oral cancer - or maybe the internet has just made us more aware of it. Bless you both and may you have many happy years together.
Tonya


Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
#7525 05-11-2006 12:26 PM
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Delia, Glad to know Charlie is getting through this well. As to the scans- it's a "sweat it out" process. John has had 4 [including the one that diagnosed the 1st cancer} and the anxiety does not lessen during the 1st yr. or so. I am reading Lance Armstrong's book "Every Second Counts" . He talks alot about how cancer changed his attitude. It is very interesting. Hope your wedding plans go smoothly. Amy


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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#7526 05-11-2006 02:44 PM
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DElia,
Put the deposit down, believe that all will be well, it is no guarantee, however you CANNOT sit around thinking the worst. Believe me I know, and I also know it is easier said than done, I know this all to well. The glass is half
full as opposed to half empty. You and charlie should begin to drink from it. Believe in it. Have a cool time with your wedding, it will truely be a celebration.
Lenny

#7527 05-17-2006 12:10 PM
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Delia,

I'm so glad to hear Charlie is doing well. Take each day as it comes, live it to the fullest. Put down your deposit and don't take a chance anything in life can keep you from what you want.

I have had a few scans now and I have one next week. They don't really get any better as they get closer but you tend to not worry until about the night before.

Take care and my best wishes for Charlie, you and your life together.

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
#7528 05-18-2006 01:35 AM
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Thank you to everyone.
Charlie has his PET and CT scan on May 31st and we have an appointment on June 2nd at 9:30am. I know that this is a hard question to answer, but if his tumor is gone I feel like all the cancer should be gone...am I expecting too much?


Delia- Caregiver and fiancee to Charlie ,age 30,(SCC of Larnyx-Stage IV) chemotherapy and radiation- no surgery finished tx:4/7/06 SURVIVIOR!
#7529 05-18-2006 03:30 PM
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No, Delia, you are not expecting too much. Be hopeful and positive, which feels much better than worrying. Does it change the outcome -- who knows? My expectation is that you will post again on June 2nd to tell us that all is well, the scans are clear and you are up to your ears in wedding plans.

#7530 06-14-2006 06:12 AM
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Delia,

I certainly hope all is well for you and Charlie. Your post struck a chord with me. I'm new on this forum. My husband is now 36 and just completed radiation, chemo, and neck dissection for stage 4 tonsil cancer that had spread to a lymph node. I was 8 months pregnant when he was diagnosed. We've always wanted two children and now we're stuck. We're afraid of recurrence, even though the doctors say they think they got it all. His official prognosis is 60% survival for five years. He never smoked a day in his life. Social drinker. We don't know whether to keep with our plans or not. We want to live life to the fullest, but the chance of recurrenct tugs at us. Any advice? How are you and Charlie doing now? So many young people with oral cancer now! I had not even heard of such a thing!!

Ann

#7531 06-14-2006 12:20 PM
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Ann,

I am 32 and was diagnosed on May 1st with tongue cancer, stage III, six weeks after having our first child. I know it is hard to not think about more children now that you have one, but try and take each day as it comes. No one knows what the future holds and right now you only need to be focusing on two things, your husbands health, and your newborn baby. I know this is not easy, as I too would like to have a second child, but I know that if I use my energy to focus on statistics, I won't have much left to get better.


DX on 05/01/06 with SCC of right tongue. 05/11/06 surgery-tumor 1.2cm & 4 cm clear margins & parital glos. & neck dissection with removal of 34 nodes/1 positive at 4mm)T1N1MO
35 IGRT & 3 cycles of chemo (1 cisplatin & 2 carbo-complete on 8/9/06.

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