Previous Thread
Next Thread
Print Thread
#149045 05-03-2012 08:00 PM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
OP Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52


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.
Brian Hill #149050 05-03-2012 10:33 PM
Joined: Oct 2011
Posts: 225
"OCF Down Under"
Gold Member (200+ posts)
Offline
"OCF Down Under"
Gold Member (200+ posts)

Joined: Oct 2011
Posts: 225
In Australia, the Pharmaceutical Benefit Advisory Committee, has given a positive recommendation in November 2011, to extend the program to boys. This is, as has been mentioned elsewhere here, a huge step.

However, it's subject to Federal Governement funding and the Federal Government is delivering the Budget next week. I'm not holding my breath because the government has been pledging to get the budget back into surplus and the leaks to the media this week are all about cuts to spending.

I've written to my Federal member of parliament, pointing out this stunning inequity. Maybe other Aussie members here can too.



Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
samkl #149056 05-04-2012 03:45 AM
Joined: May 2010
Posts: 638
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)
Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Joined: May 2010
Posts: 638
Whilst the article was very positive, I had to stop reading the responses to this article as I felt sick. How is it that people can be so ill-informed? What can we do to gag the ignorant and dangerous minority who, unfortunately, are so vocal? I am going back on the site to see if I can register and make my own (very strong) comment. Might I suggest others who may feel as strongly as I do about the benefits of the HPV vaccine do the same?

Forum is only open for comments until the 6th May

Last edited by klo; 05-04-2012 04:25 AM. Reason: addendum

Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
klo #149107 05-04-2012 04:40 PM
Joined: Oct 2011
Posts: 225
"OCF Down Under"
Gold Member (200+ posts)
Offline
"OCF Down Under"
Gold Member (200+ posts)

Joined: Oct 2011
Posts: 225
Hi Karen, just posted on Alberta forum. You're right - Olympic standard ignorance on display. Great suggestion. I think of you and Alex every day. Linda XX


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
samkl #149115 05-04-2012 07:30 PM
Joined: Oct 2011
Posts: 67
"OCF Canuck"
Supporting Member (50+ posts)
Offline
"OCF Canuck"
Supporting Member (50+ posts)

Joined: Oct 2011
Posts: 67
Alberta is a progressive province, but there is also a very old style and vocal religious presence. I'm not sure why exactly - maybe historic - but some areas are known as the Bible belt. (I will look this up one day 'soonish'.)

Usually the silent majority/common sense wins here. Maybe always.

It's obvious to me that none of the ignoramuses or their loved ones have ever experienced the joys of OC or cervical cancer etc.
I remember reading a thread (maybe OCF FB?) about the HPV connection and some woman actually said that she would feel like a 'slut' if the HPV connection was proved to be a real issue. She was worried about what her neighbours would think.

I was surprised that OC didn't change her outlook on what is important in life, but to each their own. I love this site BTW.

Thanks to all of you, and especially Brian Hill. I have never looked at a geranium in the same way. Ever.



Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation.
Leukoplakia Bx Feb 2011 - Lichen Planus.
Bx May 2011 - Hyperplasia. Same sample retested as SCC.
June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia.
T3N1M0 Stage IV.
Shauneen #149144 05-05-2012 01:25 PM
Joined: Jun 2004
Posts: 30
National OC Advocate/Speaker
Contributing Member (25+ posts)
Offline
National OC Advocate/Speaker
Contributing Member (25+ posts)

Joined: Jun 2004
Posts: 30
Shauneen, I just lectured in Calgary yesterday for the College of REgistered Hygienists of Alberta, about my story surviving stage IV OC. One RDH said she paid $350 for just the one day, and hearing my story made every penny well spent. I just wanted you to know that Alberta is progressive and the oral health professionals and researchers were top notch!
Eva



Eva Grayzel #149151 05-05-2012 05:55 PM
Joined: Sep 2011
Posts: 35
"OCF Canuck"
Contributing Member (25+ posts)
Offline
"OCF Canuck"
Contributing Member (25+ posts)

Joined: Sep 2011
Posts: 35
I would NOT necessarily call Alberta's healthcare progressive... the province lacks research dollars big time!! As an oral cancer patient, I have'nt been all that impressed since moving here from Vancouver. Dr. Joseph Dort ENT is a shining star among some real apathy here, my own surgeon included :P (Wish Dr. Dort had been my surgeon) Seems they dont see much oral cancer here compared to BC, or at least not early stages. With the research study that I was part of in Vancouver before my diagnosis and the 2nd stage now beign carried out here in Calgary as well, perhaps we will begin seeing progress.

I have been asking my surgeon, his nurse educator and the Cancer Agency here for information on Oral Cancer Awareness programs that I could get involved with, since my 1st surgery back in October 2011, to no avail. Everyone I ask says not not aware of anything locally.

Alberta is a little like the Old Souths' grown up rich cousin. Very conservative, religious and more of an old boys business network. Which makes the vaccine a harder sell here than say Ontario or BC.

In fact, last fall, The (NACI)National Advisory Council on Immunization's American counterpart, the Advisory Committee on Immunization Practices, voted to strongly recommend use of HPV vaccine in boys and young men in the US as well. So it may well be the US that jumps on this first!!

Lives are being lost...lets get the boys vaccinated too!!




Tracy Dx @ age 47
Single No dependants
NS/Social ETOH
Clinical Study (early detection)
Dx July/09 Mod. Dysplasia (lichen planus)
Dx Sept/11 TisN0M0 SSC Lt Tongue
Sx Oct/11 CO2 Laser Glossectomy
Sx Mar/12 Release of tongue anchoring (Skin graft)
Lingual Nerve Damage



Moderated by  Brian Hill 

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
Posts196,924
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