Previous Thread
Next Thread
Print Thread
Page 2 of 2 1 2
Michelle Ann #166278 06-08-2013 11:01 AM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
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






Michelle Ann #166280 06-08-2013 11:21 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
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
Uptown #166281 06-08-2013 11:48 AM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Thanks Ed.


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






Michelle Ann #166282 06-08-2013 12:47 PM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
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.)



Anne-Marie #166283 06-08-2013 01:30 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
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






travelottie #166290 06-08-2013 02:34 PM
Joined: Mar 2013
Posts: 421
Likes: 1
Platinum Member (300+ posts)
Offline
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
Sturt1 #166296 06-08-2013 04:37 PM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
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.)



Michelle Ann #166357 06-10-2013 10:31 AM
Joined: Jan 2011
Posts: 168
Senior Member (100+ posts)
OP Offline
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.
Page 2 of 2 1 2

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,925
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5