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Joined: Dec 2010
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hi there... okay one thin I have noticed that someone else doesn't appear to have commented on. Your description. Is it a visible lesion? You said right side base of tongue. If it is visible to your eyes, or in other words on his ORAL TONGUE. Then it is not base of tongue. Some people make the mistake of thinking if it is under the tongue at the back it is the tongue base. What people don't realize is that the tongue is super long and runs down the back of the throat. True base of tongue cancer (HPV+ - usually) is only visible with a scope.

I make this distinction because with the other kind of tongue cancer - oral tongue - surgery is the first treatment option. HPV responds well to radiation and chemo, therefore surgery isn't often offered first. But Oral tongue cancer can be more aggressive and usually requires surgery first and then often rads and chemo as a secondary safety measure.

Usually the time from dx- treatment I find is 4-6 weeks. And staging aside time is always of the essence... hugs and best of luck. Clarify what kind of cancer he has and then move on from there. If you are being treated at a ccc that's a very good start. hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Apr 2013
Posts: 14
timm Offline OP
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Joined: Apr 2013
Posts: 14
Wow....great info all of you. Heartfelt thanks. Cheryl, his is a small lesion only visible by scope. I initially thought of course do surgery first & then zap it with the rads, but after reading all your responses, my mind is more opened.

Also, want all of you to know how much just posting once (so far) has made us both feel, for lack of a better word, better. Thanks!!!



T - 55 yrs old
BOT - right lymph node
T1N2AM0, Stage 4, SCC HPV+
Diagnosed: 4/23/13
Surgery 5/10/13, ND, BOT lesion removed
Pathology report: 23 nodes taken, no cancer; clear margins; no extracap
Treatment recomm: Radiation only - 30 sessions, lower dose of 60gy to start in approx a week.
Joined: Apr 2012
Posts: 111
"OCF across the pond"
Senior Member (100+ posts)
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"OCF across the pond"
Senior Member (100+ posts)

Joined: Apr 2012
Posts: 111
Hi there, I live in the UK so can't comment on treatment plans though I think the protocols are pretty much a standard way to hit BOT SCC. I had a very similar diagnosis, and 18mths on from my diagnosis I am doing very well. One thing I would say is that everyone reacts differently and has differnt issues to deal with. Good luck and best wishes to your hubby. Sally


Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
Joined: Oct 2011
Posts: 805
KP5 Offline
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Oct 2011
Posts: 805
Hi,
Wow David...you hit it all!!!
As you can see by my signature, my husband had the same dx as your husband. We did not have surgery as the oncologist felt it would weaken his immune system by removing all the lymph nodes on the right side. We did have induction chemo, then chemo with the radiation. We are one and a half years out of tx now and doing well. Kevin didn't work during his tx, but part of that was because he works in Alaska on the north Slope and we live in NY. That travel was out of the question. He was back to work on January 5th 2012 though, which amazed everyone considering the work conditions in Alaska. It was -60 when he got back!
The second opinion is a great idea before having any big surgeries. They may do a surgery to removed the tumor, but that was not too bad.
Other than that...listen to David!!
Remember it will get rough. It sounds like your hubby is as strong as mine. The never been sick is a familiar story. It will be hard to see him struggle, but remember you are NOT alone. We are here 24/7. Vent away and someone will answer in a reasonable amount of time. You've had lots of offers for personal help too, so that's great. You can always add me to the PM list too if you'd like.
Keep in touch and remember you are his friend, wife, lover and now nurse....be tough when you need to, but remember to have some cuddle time too. Sometimes it might feel like he has completely pulled away, but don't let him. Even if it's just laying beside him watching a movie or just resting.
You'll get past this and will move on!! Hang in there!
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: Apr 2013
Posts: 319
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Apr 2013
Posts: 319
Hi Timm, I pretty much echo what's been said so far. I would add that since your hubby is in good shape and works out, he should know that working out while taking the chemo and the radiation would make the process much easier to deal with. I especially endorse the suggestion to try and get the Cisplatin in many, small doses as opposed to three mega-doses.

I had the 3 application version and I lost my sense of taste first, then by the end of my first week I was so nauseated that it was all I could do to keep down a single bottle of ensure plus each day; and that was a struggle.

Anti nausea drugs were no help, and a couple made it worse. Cannabis, however, got me through. IF you are a Medical Marijuana state, get a card ASAP.

I was deathly nauseated for 90 days and lost 38 lbs of mostly solid muscle. Since Dec, 2010, I have only been able to regain 12 lbs, up to 166.

FWIW, I'll be 74 on the 10th of May.

I've had two recurrences, both in my liver, each treated with chemo only, and have knocked all active tumors out with the chemo.

And I worked out, three days a week all throughout the chemo (for the 2nd and 3rd occurrences post cisplatin) and the chemo did not bother me, other than to cause a bit more neuropathy (primarily hearing losses).

My theory, and my MO has come to agree with me, is that working out so elevates your metabolism that it eliminates the chemo much more quickly that it does for someone who does not workout.

Last edited by Bart; 04-25-2013 03:44 PM.

My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
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