| Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | The door is open now to educate, for activism, awareness before its shuts again. Maybe MD will write a book? Otherwise we may have to wait for the next celebrity, public figure, to open the door again.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Paul, your story is certainly one many would appreciate. Go tell it on a mountain, my friend.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 |
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | I think Brian should write the book.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Brian could write the book, and is most qualified to do so. I have my own story, and different path, but I probably won't share. What I post is only half the story, and a small part of my life. Actually, several people encouraged me to write a book, not on cancer, but my career working 25 years in 5 star hotels, and executive protection. I was going to call it, "Sex, Lies, and Murder."
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | [quote=travelottie] on a personal level it is uncomfortable. [/quote] That's where the difference lies. The two sides of the fence (much like PEG vs NO PEG) is a personal and emotional reaction on whether you're comfortable or not. I don't have an issue discussing HPV, HSV, oral sex or what not. It's only fairly recent that this correlation was discovered. Twenty+ years ago we didn't know, and I will venture out on a limb and say many of us were probably wild and wooley back in the day. I know I was! ~lol~ As far as MD's interview? I do agree that it's a huge positive to bring this subject to the forefront, however, MD could have done a better job doing so. Personally I think the man is in denial. To dismiss the smoking and drinking and drug use (from what I've read, he was quite the wild man back in the day) was wrong. All that did was increase the odds of contracting H&N cancer along with HPV. I smoked for 35 years (cigarettes/pipe/cigars) and I drank as well. Many times (ummm WAY too many times) to excess in those 35 years. It was during those years that I more than likely contracted HPV. So my lifestyle, all of it, not just sexual behavior, is responsible for my cancer. Even if you are uncomfortable with the subject it's still a positive. The awareness this will bring as more people, celebrity or not, will come forward and discuss this subject in a more comprehensive manner and educate the public will hopefully help to prevent future cases of this disease we've all come to know so personally. Hopefully, as people start discussing this more, it will help remove the stigma of HPV. For this subject to be a "hush hush" kind of thing in this day and age is just silly. When you think that 90% of the population has had the virus and nearly all have been exposed at sometime in their lives. "T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | If a book could be written by Brian, it needn't be a big book. . . . just a small booklet type of book just on HPV. I already have a vision of the title and cover which could have someone point an index finger at the reader and the words " HPV and You" and give all the possible ways a large percentage of the population could get it. I love the straight talk style in Brian's quote (which would look good on the back cover of the book): [quote=Sturt1][quote=Brian Hill]Just remember that the CDC says that almost every American that is sexually active will have and HPV infection at some point in their lives. So it's a big club. Most people who get the infection since it has no obvious signs, will never know they had it and cleared it. It is the most common sexually transferred infection there is. Anyone that gives you crap should know that they too likely belong to the HPV club, their just got cleared by an immune system that recognized it, and they compose 99% of those ever infected. 1% end up with this bad luck of the gene pool draw.[/quote] If this could be done I would buy several copies and donate them to the university library and colleges in the area and also doctors' offices. I'd be glad to volunteer my typing and/or proofreading services.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jan 2011 Posts: 168 | Great responses all. Thanks people, for sharing your thoughts. Each response gives me a new angle on the issue. It is good that MD can raise awareness because he is in the spotlight.
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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