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#50598 11-11-2003 02:12 PM
Joined: Feb 2003
Posts: 3
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Joined: Feb 2003
Posts: 3
Hello everyone! I haven't posted much, but I've been a frequent visitor over the past year. You all have helped us in many ways, just by reading your posts.
My husband James was diagnosed in January '03 with cancer of the tongue. In Feb., he had surgery (partial glossectomy with reconstruction using a flap from his forearm); followed by 7 weeks of radiation with 3 treatments of Cisplatin. He came through all of that remarkably well and we were very hopeful.
Then, in August, we learned that the cancer was present in the opposite side of the tongue. We were given no good options. Surgery would take his remaining tongue, as well as the ablility to speak or eat. At 31 years old, this was not a way he wanted to live his life. He chose to try some palliative chemo, which we started in Sept. (carbo-taxol).
He had 3 doses of that, with no success in lessening any progression or alleviating any symptoms. He had a trach put in on 10/16 and 2 weeks ago, we switched from carbo-taxol to irinotecan. His first irinotecan treatment went OK. However last weeks' has hit him like a truck. He has vomited all weekend, and at less than 100 lbs., this isn't something we can continue. Going back to the oncologist on Thurs.
We have started hospice services and they are wonderful. We have a very supportive family and a awesome church family that have kept us uplifted through all of this. Our faith is very strong and we have continued to trust God to keep us going.
Things have just changed a lot over the past few weeks. James cannot talk (due to trach and swelling of the tongue) and this brings a whole new set of issues to the table as I struggle to keep up communication while he wants to retreat. We have a 15 month old son that demands so much energy, too. My Mom died of breast cancer 6 years ago and although she had been sick for 2 years, her death was "sudden"; nothing like this.
Sorry this is so long, I just needed to get a lot out I guess. I would love any words of wisdom anyone might have to share. Thanks for listening.


Kaycey in NC
#50599 11-11-2003 07:39 PM
Joined: Mar 2003
Posts: 189
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Joined: Mar 2003
Posts: 189
Bless your heart. You've been through so much. In no way can I offer words of wisdom. Except to say that I will say a prayer for you and your family. I have two boys.............I feel your anxiety. I lost my aunt, grandmother and mom....all within two years, but I feel them all the time. Close your eyes and count.....10 to 1.
It's something that I hold very close, and I hope it helps you.
Mandi


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)
#50600 11-12-2003 03:43 AM
Joined: Sep 2003
Posts: 37
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Contributing Member (25+ posts)

Joined: Sep 2003
Posts: 37
Dear Kaycey,
My heart goes out to you as you guys deal with this heartbreaking illness. I, too, have a great church family and God does comfort, however, it's so hard not to be overcome with fear and loneliness during these times. As a caregiver myself, I surely understand your pain.I will definitely keep you and your family in my prayers.
Debbie


Debbie/Caregiver/wife of Dan, diagosed with SCC tongue, Stage II/III, 1/3 tongue removal, lymph node dissection both sides of neck, skin graph 7/30/03. Left tumor found - radical left neck dissection 12/24/03. Could not get all of tumor/wrapped around carotid artery and in wall of jugular. 1/12/04 beginning of 6 doses of Taxol/Cistoplatin once a week, and rad 70 gray 5 days a week/6 weeks.
#50601 11-12-2003 06:16 AM
Joined: Jul 2003
Posts: 1,163
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Joined: Jul 2003
Posts: 1,163
Dear Kaycey,

I am at a loss for words to give you. I can let you know how alot of the members on this forum share in your fear and pain. This is a pretty tight group of survivors that will support each other as needed. You and your family will be in my prayers. Please keep us informed on how things are going. Daniel


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
#50602 11-12-2003 09:09 AM
Joined: Sep 2003
Posts: 1,244
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Joined: Sep 2003
Posts: 1,244
Dear Kaycey,
Don't ever worry if you think your posts are to long, they never will be, don't ever worry about what you say in your posts, that is what we are all here for. We may not always have an answer for you but we will all always be here for you. When it all gets too heavy to carry alone please come here and take what ever comfort our posts to you can give.
love and prayers to you all
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
#50603 11-12-2003 02:34 PM
Joined: Jan 2003
Posts: 95
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Joined: Jan 2003
Posts: 95
Dear Kaycey,
I also am inept in thinking of words to provide you with comfort. You came to the right place .As a caregiver too I may not always post but have found support in all these wonderful people's words.Your husband has to come to terms with a lot right now and no offense guys aren't the best communicaters to begin with.Enjoy your son maybe the joy your husband can see through your son will help him. There are several communication devices maybe if you get one your little boy can have talks with his dad. It's very entertaining for a child . I work in a hospital although i work mental health thereis another side where freguently i see young people with these machines some with there children on their laps. I wish you all the best. You'll find the strength somehow.
Take care
Diane

#50604 11-14-2003 02:23 PM
Joined: Nov 2003
Posts: 59
Supporting Member (50+ posts)
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Joined: Nov 2003
Posts: 59
Dear Kaycey,
I just read your post and I wanted to tell you how I am impressed by your strength.They say god never gives us more than we can handle but sometimes I think that we come really close.I wish you and your husband and son all the luck in the world.God bless you.
Patty


Caretaker of Joe,10/03 malignant melanoma of the tongue.
50% tongue removed,left radical neck dissection.11/03.Recurrence
to jaw and neck and multiple mets to major organs 1/2004

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