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Walt,

The whole point here is to get it right. Getting those opinions will not take enough time to effect your treatment but may very well effect the rest of your life by giving you options that are best for you.

By the way, don't limit yourself to your state if your insurance gives you any latitude. If the best treatment is out of your area it is still the best treatment. You have a very narrow number of options here so you will not have that many places to go. Just try and make sure you cover all of them the best you can.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: May 2012
Posts: 31
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I'm not clear on how to identify the *best* treatment.

I'm pretty subjective about removing my tongue, but that *could* be the best treatment.


Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
Joined: Sep 2009
Posts: 618
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This is always a tough call. All we can do is search for the best options available out there and then go and see the folks who are presenting them. The "best" option is the one you feel is best for you.

I know that the options I chose were very clear to me after hearing what the various institutions had to say. Ater it is all said and done this almost always comes down to a gut call.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Sep 2006
Posts: 8,311
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Get multiple opinions and see if that becomes clearer.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I have a friend that beat this a little over 10 years ago.
He was treated at MD Anderson in Huston and he has put me in-touch with them.
They now have my pathology report faxed and insurance cards and signed documents pdf'ed and emailed.
They acknowledged receipt saying I should be hearing from their Head and Neck Center soon.

PET/CT Scan tomorrow!

I'm locally scheduled to have a Med Port installed on Tuesday AM and they will admit me probable Tuesday or Wednesday to start TPF chemo:
Docetaxel(Taxotere) 75mg/m2 iv over 1 hour d1
Cisplatin (CDPP) 75 mg/m2 iv over 1 hour d1
5-FU 750 mg/m2/d civi d1-4
Repeating every 3-4 weeks.

Last edited by waltersaegir; 10-24-2012 03:54 PM.

Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
Joined: Oct 2011
Posts: 805
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Major chemo Walt. This is what Kevin had too. It was very rough and he was 54 and in perfect health other than the obvious.
I'm not saying I wouldn't do it, but just know it will be harsh. STAY HYDRATED!! Cannot stress this enough. Go in for fluids daily if you need to. Even if it's to the ER. That's what some of our friends have done lately.
Kevin and I had a bp kit at home. If his bp went below 108/60, we went for fluids. It's an easy way to tell if you're getting dehydrated.
You have someone going with you to your appts, right?
WIll be praying Walt. Please continue to reach out to us as we will be watching for updates.
Blessings,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Congrats on your negative PET scan. I just finished treatments not too long ago Sept 26th. Do they usually wait 3 months or 6 months to do the PET scan after treatments. I do have a follow up appointment on the 6th of Nov but I think they are just going to scope me again.


BOT right side to the midline also some SCC in lymph nodes on both sides of neck/IMRT 36X 7 chemo treatments with Carboplatin. I received this type because I had previous hearing loss or so that's what I was told. HPV 16+
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Thanks Kathy.

This morning they did a PET/CT scan and the tumor is there, but has not spread.

My ENT Doctor wants to remove my tongue.
My Radiology Doctor has performed Brachytherapy and since he has not performed one in several years, he highly recommends Dr. Demanes at the UCLA Medical Center. He has FedX'd (Overnight)the PET-CT scan to Dr. Demanes and he previously sent the other records and Pathology reports.

They will each be at a Radiology conference in Boston next week. So, it possible Dr. Demanes might not have time to review until the later part of next week. My Radiology Doctor will try to see Dr. Demanes at the conference.

The description that my Doctor provided on Brachytherapy sounds impressive:
X-Ray image to guide insertion of catheters to the edge of the tumor and software controlled treatments with machine inserted radiation wire inserted into each catheter for a given amount of time.

Won't know if I'm approved for the treatment until Dr. Demanes review and contacts me.


Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
Joined: Oct 2011
Posts: 805
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Good news that it hasn't spread.
Hate the stinking waiting game!! They want to remove your whole tongue?
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: May 2012
Posts: 31
Contributing Member (25+ posts)
OP Offline
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Joined: May 2012
Posts: 31
Yes, the ENT doc especially!


Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
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