| | Joined: Jun 2014 Posts: 56 "OCF across the pond" Supporting Member (50+ posts) | OP  "OCF across the pond" Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 56 | Hiyah My tumour wasn't tested for HPV, I don't think many are in the UK. I'm wondering about trying to push for the HPV vaccine. Kids in school get it over here, but not adults. I'm 42. Is there any point? I ask, because I don't know if I can get it on the NHS and it would cost about �400. I don't know if HPV caused my cancer, but I know that I gave up smoking NINE YEARS prior to diagnosis. (Although I did have a white patch since 1999; I gave up smoking in 2005). I'm going to see what my GP says tomorrow, and I'm at maxillofacial on Wednesday for my monthly check up. Is there a point in pursuing this? Would it help my survival chances? Thank you xxx
Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | The HPV vaacine is available in the US to only people ages 12-26. It has not yet been proven effective to other ages. I believe it is under some testing right now to try to figure out if it is effective in older adults. I dont know if you are over 26 or if in your country the Guardisil is given to other age groups. Base of tongue oral cancer or tonsil cancer is usually where the majority of HPV caused cancers are found. Ask your doc about having your tissue tested for HPV. Dont beat yourself up too much about what the cause of your cancer was. Honestly, the treatment would have been the same no matter what the cause of your cancer was. It has not been proven effective in patients who have already had HPV+ OC, thats part of the study.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Estelle, as Christine said the HPV virus is usually only found in Oropharyngeal cancers. That's the base of the tongue and tonsils. This was not where your cancer was - the oral tongue. It wouldn't change any thing anyway and would make NO difference to your ultimate survival. I do however think that you should discuss this with your Oncology team as you need to be quite clear on the HPV thing and cause and effect. My advice is don't waste your money. Take care, Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Mar 2014 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2014 Posts: 31 | Conventional wisdom holds that there is not much point in getting HPV vaccine if you are over 30 years old since nearly everyone over 30 is already infected and the vaccine is not known to be effective in ending an existing infection. As always, the best advice is to consult your medical professional who would have the latest definitive information about medical issues.
2/2014 SCC T4aN2bM0 HPV+ Tonsil/BOT
3/3/2014 PEG and port
3/10/2014 Chemoradiation therapy begins 260 mg Cisplatin x3, 2.12 Gy rads x33
4/23/2014 Final Cisplatin infusion
4/25/2014 Final radiation treatment
7/17/2014 PET scan. Lymph nodes clear. Primary tumor reduced both size and SUV (borderline hypermetabolic) so it's inconclusive.
8/2/2014 PEG tube removed.
11/24/2014 Saw MO, RO, ENT, and Head & Neck Surg. over past 10 days - all agree no recurrence but enhanced surveillance will continue.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | There are studies being conducted as to the effectiveness of the vaccine on older adults who have already been diagnosed with HPV+ OC. Im not sure if anyone over the age of 26 is able to get the vaccine in the US.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I was told by the PhD leading HPV researcher at Moffitt that even at my advanced age IF I were still sexually active with multiple partners post OC that I should get the vaccine. They feel that regardless of previous HPV exposures the vaccine will protect against future exposures and there is no downside to getting the vaccine vs the potential benefits and yes at any age you can get the vaccine if you pay for it. JM2C's
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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