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Joined: Nov 2002
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"Above & Beyond" Member (500+ posts)

Joined: Nov 2002
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Hi JoAnne,
To answer your question, I didn't have surgery because initially my tumors were far too big and dissection would be very damaging. It was hoped that the chemo-radiation could shrink the tumors so that operation could be more easily done. But I was so fortunate that when the treatment was over, surgery was not necessary. As regards the risk profile, I didn't smoke or drink in my entrie life, either. No family history and when I was diagnosed, I was much younger than your husband. I learnt not to ask 'why me' since it didn't help me fight the battle. One thing as a reminder to you, I did suffer from severe depression after completing treatment, after my doctors told me that I was in remisssion!
So it is essential to take care of the mental state of both yourself and your husband.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
Joined: Mar 2006
Posts: 99
Senior Member (75+ posts)
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Joined: Mar 2006
Posts: 99
Hi JoAnne

My husband started treatment for Stage IV , back of tongue SCC on 3/28, one day after your husband. Althogh he hasn't had any surgery because his tumor is a T4 and is inoperable, I can ralate to SO much of what you have said. I think we're in the same place right now, somewhere between fear and hope{which are absolutely exclusive} To have one and not the other would be emotionally unhealthy . You can grieve while still being hopeful at the same time. Aside from the obvious worries we are grieving a loss of certainty and of the comfort of our old lives. But we need to make peace with this new road that lay before us. I think I am finally coming to accept this and embrace the challenges and changes that lay ahead. Change is hard enough even when its for the good never mind when its not something you would wish on any body. Today we had a good day so I feel like I have a grip but tomorrow...well, lets take it one day at a time. I have also found this forum an unbelievable comfort and a wealth of information.

All My Best JoAnne


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
Joined: Apr 2005
Posts: 2,676
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
In case you missed Gary's post, Kerry and Joanne, find a minute to go to www.curetoday.com and look at the top righthand side of the page for Current issue. In that issue is a good article on "co-survivors" [caregivers]and what we are experiencing. I f ound it very worthwile reading. 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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Joined: Feb 2006
Posts: 27
Contributing Member (25+ posts)
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Joined: Feb 2006
Posts: 27
Amy,

Thanks for reminding me to look up that weblink. I read a few of the articles and they were very good. I too am a caregiver, my husband's radiation for the tumor on the base of his tongue and lymph nodes started 03/29 and his first chemo was 03/30. The effects of the radiation are just starting to kick in so I know this bumpy road is about to get rougher.

Take care.


CG to husband, dx 02/09/06 tumor base of tongue spread to lymph nodes. 35 combined xrt/imrt rad plus 3 rounds Cisplatin. Final tx 05/18/06. Parotidectomy & Sel Neck Dis 08/09/06. Lung cancer surgery 04/20/07. All currently in remission.
Joined: Apr 2006
Posts: 378
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Joined: Apr 2006
Posts: 378
Thanks to all of you for your support and encouragement. Amy I saw that article about cosurvivors at the RO yesterday and it's very uplifting. Whether as a patient or caregiver, the battle against cancer is difficult and consuming and I really appreciate how much we can help each other deal with it.

There are also days when it does feel like cancer central in our home and I don't think that's a good thing. I will keep in mind the need to take it one day at a time and remember that this too shall pass.

I'm grateful to know that we all experience similar emotions. I miss the days when life seemed so certain for us but I am also coming to realize how much of an illusion that was. In all honesty I can't see around the bend at this moment but it's less scarey since I've found this forum.

Kerry you are right, change is hard enough when things are going well. Eileen I'll email you the information I have on the DaVinci robot.

Jack and I are trying to find our new normal whatever that may be. Thank you for sharing this journey with us.

Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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