| Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | There is no blood test for HPV. All biopsy samples must be kept 7 years in most states by law. I suppose if you were a research laboratory ( not available to the public) you could look for HPV16 antibodies in the blood, but that would only indicate that at some point in your life you had come in contact with it. I take that back, I am not even sure that is possible.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | 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 | Back in the day when I insisted that my slides be tested there were only a few in the U.S. that had reliable oral HPV testing facilities. Mine were sent to Johns Hopkins where Maura Gillison resided at that time. Alas, it's not much better today.
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | I haven't had any luck finding information that clearly explains the different HPV tests or for that matter explains why there is a different test for oral HPV than cervical (pap smear digene) HPV testing and if so why! Charm indicated his first test (at a major CCC) was negative (immunohistochemistry) and a different test (PCR) was positive. Mine was ambiguous (sensitivity levels??) from a CCC lab just trying to get up to speed on these test having numerous problems (and no primary tumor). I'm sure over the past couple years that there have been improvements, but apparently there are still various test protocols, few standards, and disagreements on the sensitivity levels (among other things). Anyway since HPV+ OC is a major issue on this forum it would be nice to get a lot more knowledge about best practices and what we should be asking for and expecting from these test results.
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
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Anita It can not hurt to contact Clark's doctors to get his tumor tested for HPV. Be persistent. I had to work my way thru the medical team since my ENT surgeon and RO explained they would not have changed past treatment nor even future treatment based on my HPV status so it wasn't "medically necessary". My MO however finally agreed based on my psychological plea (but it would help me sleep better if I knew). Lucky for me, my CCC had changed its protocol and was now doing HPV tests routinely and I would be one more data point so I didn't get charged anything. (Catch 22: most insurance won't pay for individual tests that are not certified "medically necessary" although they pay for mandatory hospital procedures assuming they are necessary) I did not mean to confuse the issue by mentioning blood tests, that was just an example of a highly standarized test, uniformly administered and evaluated ( at least for cholesterol, WBC, creatine, etc all the things they tested me for weekly during TX). But I'm glad I did since it gave Brian the opportunity to explain that HPV needs to have the tumor tested and there is no relevant blood test to see if the cancer was HPV. So call the doctors up and ask to have the tumor tested for HPV with at least PCR or the better one Brian posted: in situ hybridization. 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 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Thanks, Charm, I am printing this out and will take it with us at our next appointment with the ENT.
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Exposure to human papilloma virus ( HPV) can be measured by testing the blood (serum) for antibodies. This was a rather common test a few years ago that many of us involved with research studies may have had.
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
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Don Your point is correct but as Brian pointed out, exposure to HPV doesn't prove anything about a cancer tumor. Although I used the qualifier "relevant" in my comment about blood tests not telling whether a cancer tumor is HPV or not, it would have been more accurate to use "probative". As I posted in another thread,the CDC stats 4 out of 5 women had HPV by age 50 so their blood tests would show HPV exposure but thank God 80% of women don't get oral cancer. I just wanted to be sure that Anita knew not to let her doctors try to pawn off a meaningless blood test instead of a meaningful HPV test on Clark's tumor. This cancer pretty much destroyed any trust I had about doctors' knowledge about HPV. As always, you keep me honest and accurate. Thanks 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: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | Here is a place where you can get a state of the art pathology report. http://pathology.jhu.edu/department/services/consults/hpv.cfmI will ask Gilison on MOnday if the Lab at James is taking samples form outside their facility so we can post a second back up. If it is they will be doing insitu hybridization.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | 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 just e mailed Dr Giuliano at Moffitt. She researches HPV and we have traveled many places and spoke in favor of the Gardasil vaccination. Let's see what she tells me.
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: 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 | Here is Dr Giuliano's response to my e mail. Clear as mud to me. David, There are sever different polymerase chain reaction (PCR) primers that are used to test for HPV. The ideal assay is dependent on the type of specimen. For example, in our studies of female and males where we obtain freshly collected exfoliated cell samples of the cervix, penile epithelium, or oral gargle we use Roche�s assay � Linear Array, which allows us to simultaneously detect 37 different HPV types. When we are working with tumor specimens we prefer to use the LiPa assay which uses a much smaller PCR primer that gives much higher sensitivity in tumor specimens � this detects 27 HPV types simultaneously. We are using the LiPa assay for our funded lung cancer study. We have another assay which is used to quantify viral load. This assay uses an HPV type specific primer and is also very sensitive. Currently we quantify viral load from specimens that are HPV 6, 11, 16, and 18 positive. None of the above assays are licensed for use in clinical practice. In the hospital laboratory I understand that p16 is used as an assay as it strongly correlates with HPV status. Hope this helps and hope to see you soon. Anna Anna R. Giuliano, PhD Chair, Department of Cancer Epidemiology and Genetics H. Lee Moffitt Cancer Center and Research Institute
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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