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#96548 06-02-2009 02:52 PM
Joined: Mar 2008
Posts: 3,082
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I posted my news on the general board that my CCC is now testing for HPV and the tumor I had out in February tested NEGATIVE for HPV. I was wondering how many of us on this board who had a recurrence had HPV? It would seem a reasonable assumption that if the preliminary studies show that HPV tumors respond better to radiation and chemotherapy, that those of us with "Chaste" tumors would have more recurrences. I know from the signatures that many of us predate standard HPV testing, but it would be interesting to hear from others on this.
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
Joined: Sep 2006
Posts: 8,311
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Patient Advocate (old timer, 2000 posts)

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I don't remember any that tested + for HPV ever posting about a recurrence.


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.
Joined: Sep 2006
Posts: 49
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Sep 2006
Posts: 49
Teri was tested for HPV - negative.

________________

Caregiver daughter Teri, age 43, non-smoker, non-drinker, aerobics instructor, SCC 4/06 SCC lateral tongue, partial glossectomy, mod rad neck dissection, 35 IMRT; metastatic return 4/08 to lung, bone, kidney. 10 radiation to lung, 3 Docetaxel + Carbo, lost her battle on 9/29

Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Joined: Mar 2008
Posts: 3,082
Worried Mom

Thanks for posting especially since it must bring back memories of Teri's struggle. I am sorry for your loss. God must have needed an aerobic instructor to whip those Angels into shape for Armageddon. Seriously, no parent should ever suffer what you have suffered. I'm sure that while she may have "lost her battle on 9/29", that she "won the war" of living a good and holy life.
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
Joined: May 2008
Posts: 551
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: May 2008
Posts: 551
There seem to be several HPV- posters with recurrence, including Stephanie. A forum search finds a few others, as well.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Margaret

Yeah, that's David's point - that so far he has not seen any HPV+ have a recurrence, just us HPV- posters. thanks for digging around to find that information. I have not seen any studies showing this to be true, just anecdotal. I am definitely going to bring it up to my Medical team to see what their experiences have been. Now I am glad I did not know my HPV status earlier, as I would have been even more worried last year. Right now, after this second bout of cancer, I am really hoping that the "third time is NOT the charm" wink


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

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