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Joined: Jan 2011
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Joel Offline OP
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Hi Michelle, Having my tonsils out is the worst, in addition to the biopsies in the rest of my mouth. I can hardly eat. My mouth really hurts, and you had a wisdom tooth pulled too? Ouch! I don't have a start date for radiation yet, I have to go to the dentist first. I am waiting for results also. My ENT suspects it's in the tonsils. We are in a close place. Keep in touch.
Joel


Joel, 52
SCC HN Stage IV, Excisional biopsy to remove 4 lymph nodes 12/2/10, Diagnosed 12/9/10, Tonsils removed, mouth biopsy 1/13/11, wisdom teeth out 2/7/11, chemo starts 2/22.
Joel #128055 01-18-2011 06:43 AM
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The doctors found my primary tumor at the base of my tongue by using this scope that went down my nose. They took out my tonsils when they biopsied what they think is the tumor along with about six other spots in my throat and mouth. I will get those results in a few more days. I asked my oncologist if the radiation would be more painful than having my tonsils out and he said yes, but I don't believe him!!! Is your tumor HPV positive? Mine is. I think just like Michael Douglas. Will that get me a spot on Letterman?!! -Michelle


SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
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@ Michelle Ann,

Did they say MD's OC was due to HPV?

I hadn't heard that before.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #128205 01-20-2011 05:31 AM
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They haven't officially said MD was due to HPV..... but it was BOT and from what he says about what he knows of this cancer, he's got it beat, leads me to feel it was due to HPV and they just aren't saying it cuz he's a celeb. Why else would someone say they have it beat only 6 months or so after the beginning. For me, I can't say I have it beat for 5 years, but they always tell you it's different for HPV as you don't have to worry so much about it coming back.

Joel~ so far, have they only found it in your lymph nodes?? I don't know what HN means in ur signature, but if that's the case, that's kind of odd, usually it starts somewhere in your mouth and then spreads to lymph nodes. Mine started on my right lateral tongue and then spread to my lymph nodes.

Either way, I will be thinking of you, and hoping that the biopsies are negative, but with lymph node involvement, it almost always is somewhere else as the primary, so hope they figure that out for you.


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
bethers0808 #128209 01-20-2011 06:41 AM
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MD has, according to media reports I read, a recent tobacco history so it's possible that the cause is a combination of the virus and tobacco. Remember the "HPV study" that we all refer to concluded that if you present yourself with a distinct profile (white male, primary in the BOT or tonsils, mets to a node, college educated, etc) then you have a 70.3% chance that you will test positive for HPV. So that also means that if you present yourself that way you also have a 30% chance that the virus is not involved. Even if the cancer cells test positive for HPV some cancer experts decrease survival chances when tobacco use is also in their history. Whether MD's cancer is HPV related or not is easy to test and I'm sure that has been done but obviously they feel they do not want to share those results.


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.
davidcpa #128216 01-20-2011 08:59 AM
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From the scant info I have read, it doesn't seem to me that MD fits the HPV+ profile very well:

Isn't he a bit old (66)?

Doesn't Stage IV HPV+ OC normally present as one or more obvious large swollen lymph nodes and a small primary?

He said on a recent "Access Hollywood" interview that he saw doctors last January and May about a persistent sore throat, then went in August when his tongue was bothering him.

http://www.accesshollywood.com/mich...flirty-texts-to-matt-damon_article_42013


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #128245 01-20-2011 04:20 PM
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I don't think the age is necessarily an important factor but I have read that 1948 was kind of the birth year break for HPV but I can't believe that as I'm sure we had HPV before.

Most of the HPV + patients I have talked to only found the cancer because of a painless swollen node and not a sore throat and I for one had a small to nonexistent primary. Again the study does conclude that you have a 30% chance chance of having a primary in the orophyrnx region and not be HPV+.


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.
DonB #128251 01-20-2011 05:49 PM
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Don

From my point of view, MD could also fit the HPV profile. I was 60 years old when I was first DX and both my tumor biopsies tested positive for HPV 16. I did not have any large swollen lymph glands and my only symptom was an earache and then a sore throat for months. I had a large primary BOT tumor. Of course, my cancer came back which does not fit the HPV profile of successful first time TX (drat it)
He's not "too old" since my understanding is that an important factor is number of sexual partners, i.e., the more you had, the better your chances of having an HPV infection that didn't clear up. Most movie stars have high "numbers", heck even guys like me who were single in the 70s could easily exceed the numbers I've seen in studies.

I'm impressed that MD is giving such a public warning about the dangers of smoking and drinking. Young people are more likely to limit or give those activities up then sex.
charm



65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
bethers0808 #128264 01-20-2011 11:31 PM
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Joel Offline OP
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HN= head and neck. I had 4 lymph nodes removed, only one tested positive for SCC. Even the suspect remaining lymph nodes are small.


Joel, 52
SCC HN Stage IV, Excisional biopsy to remove 4 lymph nodes 12/2/10, Diagnosed 12/9/10, Tonsils removed, mouth biopsy 1/13/11, wisdom teeth out 2/7/11, chemo starts 2/22.
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