#24932 11-19-2007 09:19 PM | Joined: May 2006 Posts: 57 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: May 2006 Posts: 57 | BRIAN!! I am floored....I'm sorry, but I've been so absorbed in my husband's personal fight with this cancer, and the occasional "nagging" fear that my HPV infection 25 years ago may have been a factor..........I didn't realize how much research had been done. THANK YOU...............THANK YOU....... This disease will owe it's demise to you!!!!! Love, Mandi
Stage III tonsil, Dx 8/14/2002,chemo and rad...reoccurance 8/3/07,Base of Tongue,vocal cords,stage IVA,total larynectomy and glossectomy 9/4/07 with pec flap...reoccurance Nov. '08 and Feb. '09 (positive margins remained after each operation) Second pec flap May 7, 2009. Still positive margins.
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#24933 11-20-2007 07:04 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Mandi, It is not known at this date if the virus remains in someone for decades dormant, (and if so where) or people just get re-infected over and over again from repeated exposure to it because it is so ubiquitous in our world. I spent a great deal of time with Dr. Gillison on the phone today reviewing what we do NOT know, as OCF is funding a very preliminary look at some of this with her. Given all that we do not know for sure, you would be wrong to beat yourself up for something that there is no way of knowing if it is even 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. | | |
#24934 11-21-2007 01:40 PM | Joined: Sep 2007 Posts: 61 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2007 Posts: 61 | Hi Brian, It is my understanding that the vaccine is still in the testing stages for males and also for females over the age of 26. I know that in my office the vaccine is not yet offered to males at all- though I can tell you that when it is my boys will be getting it! Of course, since the vaccine is considered relatively "new" to the public, we still meet with some resistance from parents who feel that we over-vaccinate our children. If I could only direct all of those people to this site..... I did speak with our offfice rep from Merck who was familiar with the link to oral cancer, and she was hopeful that the vaccine would be available to males soon. Looking foward to all the new info you can give us. Liz
CG to friend Mary. SCC Stage IV-A of rt. tonsil, mets. to lymph node on rt. DX 06/07,tonsillectomy 08/07, Chemo Cisplatin, Taxotere and 5FU X3 cycles; RAD completed 1/20/08 RND scheduled for 3/08. 54yr.old, NS, social drinker.
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#24935 11-21-2007 03:52 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Vaccination has saved millions of lives in the US alone. Just to give you a idea of their impact: Diseases that have been effected by vaccination radically, stated first - the number in the year which the maximum number of cases occurred and second, the number of cases in 2004-05, then the reduction (negative percent) between the two.
Diptheria, 207,000 - 0 - -100% Hepatitis B, 200,500 - 17,358 - -74% Hepatitis A, 35,200 - 4,500 - -79% Measles, 900,000 - 66 - -99.9% Pertussis, 265,000 - 25,000 - -87% Polio, 21,300 - 1 - -100% Rubella, 58,000 - 11 - -99.9% Congenital Rubella, 20,000 - 1 - -100% Tetanus, 1,700 - 34 - -94% Hib (<5 years) 20,000 - 30 - -99.9% Varicella, 83,500 - 11,250 - -87% Pneumoccocal Disease, 64,000 - 37,775 - -41%
This is a pretty impressive record.
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. | | |
#24936 11-24-2007 03:42 PM | Joined: Nov 2007 Posts: 3 Member | Member Joined: Nov 2007 Posts: 3 | Karen, I am also concerned about the possible connection between HPV 16 and oral cancers. When I underwent a hysterectomy 12 years ago there was some concern that the cervical dysplasia I'd experienced over the preceeding 6 years might be caused by HPV, but because no cancer was evident no follow-up to determine the cause was done. I have two daughters (22 and 18) and agree that I would(and will) do anything to prevent their having to experience the trials and tribulations of oral cancer. Hang in there. Your husband is half-way through the "abuse" of radiation therapy. His road to recovery is a long one, but with a supportive spouse like you his travels will hopefully be easier. Karon PS - I was a "lurker" too!
2 time squamous cell CA of tongue; surgery both times, IMRT (37 treatments) finished 1/19/07
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#24937 11-25-2007 09:51 AM | Joined: Feb 2007 Posts: 61 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2007 Posts: 61 | The medical oncolgist I went to suggested testing for HPV. She was certain my tumor would test positive as I didn't have any other risk factors. I really didn't care because I knew it wouldn't affect the course of treatment. She just went through the lab that hospital used; she didn't have to send it to Johns Hopkins. At first it came back as a "high risk HPV" and it took a couple more days for them to "type" it. I ended up with HPV-33. I'm not sure if the virus originated with me or my husband, but I do know it would have been contracted more than 30 years ago (that's how long we have been in our relationship). I was surprised my primary care physician had that I was HPV positive in my records and never told me. I do get a pap every year, but I could have missed a year if I wasn't aware that I was at risk.
SCC, right tonsil, T1N0MO, G3, HPV-33 positive, 7 wks IMRT 2/21/07-4/13/07, 48 year old female when diagnosed, non-smoker, weekend wine drinker, tumor and both tonsils removed. Ethyol for 3 weeks; no peg; only minimal longterm side effects
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#24938 11-25-2007 07:29 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Simple Gifts - while it is not unheard of, this oncogenic version of HPV is not the usual suspect in tonsillar cancers. Would you consider sharing your medical history and biopsy results with a researcher ( data protected by laws) at anaother institution? If you will, please email me and I will put you in touch with them. My email is in the little rolodex card next to the top of the post.
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. | | |
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