 
#36182 01-29-2003 12:10 PM | Joined: Dec 2002 Posts: 36 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Dec 2002 Posts: 36 | Hello again
Sorry I have not posted in awhile but I
Stage 4b Tonsil cancer Survivor!
Dx 11/05/02 SCC 2cm tumor in left tonsil 7x4cm neck node L/side with other positive nodes on right,
Wide field Tonsillectomy Nov 20/02
Tx 1/2/03, Cisplatin Chemo x3, IMRT x 40 L/Neck Disection 08/15/03
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#36183 01-29-2003 02:29 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Hi Raymond. Perhaps my experience can boost you a bit. The tumour on my left tonsil responded very well to the radiation and Cisplatin. It decreased significantly about two to three weeks after radiation started but the lymph nodes on my neck (two big ones) responded more slowly. Even after completing the whole treatment, I could find the lumps there and I also felt discouraged at that time thinking that the therapy had little effect. It was my oncologist (I guess based on his experience) who comforted me that the shrinking would take time. It was two months post treatment that I had MRI , ultrasound, and CT scan to confirm the status of the neck tumours. The tests could not detect cancer cells in my tonsil and neck area. So surgery was unnecessary. Raymond, be patient and cheer up.
Karen, stage 4 tonsil cancer diagnosed in 9/2001. Concurrent radiation and cisplatin.
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.
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#36184 01-29-2003 03:19 PM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Ray,
Hang in there buddy. You have come to the hard part, and for me, it got a little harder once the radiation treatments stopped and I was hanging around the house, after being treated twice a day.
It does get better...it just takes a little time.I know that you have a lot of faith, so try and keep the faith.
Once the treatment ends, try and find a support group or a CancerCare organization that will send you a mentor. I found a local organization that offered 6 free sessions with a private psychologist/counselor for cancer patients. Also consider getting anti-depressants if it gets really bad.
Take care Ray,
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#36185 02-05-2003 07:55 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Raymond,
I hope this post finds you well and improving. I am right behind you. I'm getting IMRT radiation and Cisplatin (x3). I am only 1 chemo and 7 rad treatments into it.
Did you get IMRT or XRT?
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#36186 02-06-2003 10:52 AM | Joined: Mar 2002 Posts: 188 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2002 Posts: 188 | Gary........How is everything going? Did you find out about SSDI yet? Keep us posted when you feel up to writing. Sending good thoughts your way. SIncerely, Donna
SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!
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#36187 02-06-2003 11:57 AM | Joined: Feb 2003 Posts: 25 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2003 Posts: 25 | Be strong raymond, we are all supporting you and wishing you well. | | |
#36188 02-06-2003 04:42 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | If it is any consolation, in my own case I did not have significant node size reduction by the end of radiation treatments. When I had the neck dissection to remove the suspect nodes, the biopsy of them after surgery showed that they were all cancer free. The radiation had killed everything. So size is not the only indicator of the removal of the cancer, and nodes which are cancer free after radiation, can still show positive on CT scanning.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#36189 02-14-2003 08:41 AM | Joined: Dec 2002 Posts: 36 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2002 Posts: 36 | Hello again
Happy Valentines Day
I am having my LAST radiation on Monday 17 03 that
Stage 4b Tonsil cancer Survivor!
Dx 11/05/02 SCC 2cm tumor in left tonsil 7x4cm neck node L/side with other positive nodes on right,
Wide field Tonsillectomy Nov 20/02
Tx 1/2/03, Cisplatin Chemo x3, IMRT x 40 L/Neck Disection 08/15/03
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#36190 02-14-2003 10:32 AM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Raymond,
Congrats on almost being finished with treatment. I don't want to rain on your parade, but a little word of caution. The radiation keeps working on you after treatment ends, and the hardest part of my entire ordeal was the first couple of weeks after treatment ended. I felt bad, probably missed the daily routine of going to the hospital for treatment, and got depressed. Fortunately that is when I discovered this forum, began taking daily walks, found a support group , and quickly got over it.
Best of luck to you,
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#36191 02-14-2003 04:05 PM | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 | Danny's post is very accurate. I would like to add that while I too was interested in avoiding surgery, in retrospect I am glad they did the modified neck dissection and took out any nodes that still showed up on the CT. You've come this far through the worst of it. You want to be sure that every bit of this thing is gone. Compared to radiation, the surgery ain't nothin....
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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