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Rita,
You can report the adverse effect yourself. The doctor/hospital refusing to report the adverse effect is not ethical. They were probably too lazy or busy to fill out the form 3500A (and this is purely speculative on my part - there is most likely a risk management team at the institution with internal guidelines for these kinds of events).

The FDA and manufacturer will sort out whether it has merit or not.

The FDA monitors ALL vaccines VERY closely.

For consumer reporting instructions see: http://www.fda.gov/medwaTCH/how.htm

This is why we have a forum - for the free exchange of ideas. The points you brought up are valid concerns. Conversely, they do draw attention to the fact that information gleaned from the internet can be erroneous and misleading. OCF goes the distance to insure that facts presented here are science based with a peer review panel of experts (and I am not including myself in this group I am merely a cancer survivor myself and one of 3 forum administrators).

For what it's worth, IMHO the benefits outweigh the risks and if I had children I would not hesitate to have them vaccinated.

Ultimately, however, it is still a parental decision.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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I would also add that missing periods after injections should be reported. But is this a serious side effect since they start up again after a period of time? How do you jump to not having children later in life because of this symptom? Is there medical evidence that there is something that might happen that we have peer reviewed evidence of? Or is this alarmist thinking? This is what I mean about proportional response.

It is possible that the protein which is in the vaccine alters her hormone levels, altering her cycle each time? Yes. This certainly happens to women on birth control pills (hormones) until they find the right dosing etc. (Why are there so many types and levels of these pills? One size does not fit all, and the only way to know a particular one is right for you is trial and error.) But does it alter them for life? Hardly. Do the women who take them and have period irregularities report them to the FDA as adverse reactions? Are period irregularities listed on the possible side effects of the vaccine mandatory package inserts? If they are, they are known possible events. If they are not black boxed, the FDA does not consider them extreme adverse events. They are know possible side effects, and they are printed with the rate of occurrence for anyone to see. Ditto the vaccine.

Look at the package insert on a common anti-depressant sometime... that half of America is on. That reports EVERY side effect found during testing before sale, no matter in how small a number of people. Seizures are on the list.... does that keep doctors from prescribing them or people from taking them? Benefit vs risk. Throughly thought out through informed consent. These reported things have been looked at, reported to the FDA (who does occasionally make mistakes) which after a scientific evaluation by an independent expert board approves for sale or not. It is not a perfect system. But is better than most countries in the world.

No one wants to not have disagreements or discussions on the board. It is part of the process of getting the best information as people express their opinion. But the difference between this board and most that you find on the web is that it is monitored. In the background there are educated people from the field that scan the messages for things which are not supported by evidence, but stated as fact, and for things that might hurt someone, or people trying to promote something that is for a commercial benefit. Since I don't read all the posts, there are monitors like Gary, and there are, from different institutions around the country, people who take turns reading what everyone puts on here. They do not express their opinions or participate openly because as medical and dental professionals, that is considered an area in which they could be held liable. But they do forward suspect threads to me and others for us to correct or voice concerns. This forum is not a free for all, not a democracy, and while public, it has rules and oversite. That makes it unique from most of them out there.


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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Ok It�s been a while since I was a regular poster here and let me tell you all a few things. First, this is a major thread hijack. You have dragged the topic across a desert from what it started.

Second, one of my least favorite problems here in this forum was and is senseless banter and outright argument. The topic or excuse was really irrelevant. The fact that some or all here are more than willing to let it fly without regard to who might be greatly offended, was and still is a great waste of time and counter productive to the good that might come from the association of all of us.

Third, (and my point) I have recently read here a great deal about sex, HPV, Gardisil, rightwing politics, conservative religious points of view. I really want all of you to think out loud that the reward for the �time of free love� (generally Leftist) brought about unprecedented STD impact throughout the 60�s 70�s and 80�s including herpes, AIDS and a host of others. Further, that the Left brought freedom from responsibility via mother�s �right� to choose. This culminating in the unbelievable fact that abortion today is available with no need for parental input to younger than 18 YO girls. Now you want the Right to suddenly accept that a drug for another sexually (by your own admission) transmitted virus should be MANDATED throughout the land (also to very young girls) without scrutiny? Oh it�s about cancer so that should get it under the radar�..The fact is you that have adhered to extreme Leftist politics are as much to blame as any on the Right! Your insistence and persistence in stupid �free love� based lack of prudence, lack of morals, lack of accepting responsibility is why there is a Conservative Right Wing at all!

I suggest that you stop fighting and blaming the Right for anything. If your point is a good one, it is worth explaining why and eventually the Right wing will agree. If this forum sounds like every other Leftist rag then you are going to slow the advancement towards prevention down and you might just send this Right wing survivor back into seclusion.




Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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whoa where did that come from?
.. who guards the guardians?

M



Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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Markus you might be right. I'll let you know that I was driving home after work tonight when one particular comment I had read here last night suddenly came back to me (and it may have cause an overly harsh diatribe) Let me show the following excerpts from several forums: (no particular order) to give some perspective for my rant.

�Sadly, there is also a political side to this because some groups consider gardasil to be like condoms, condoning sex.�

�I am not surprised that there is much mis-information about this drug because of far right religious concerns. Conversely almost all drugs, even OTC can have adverse effects.�

�Ambulance chasers love this and play on the emotional, political and religious aspects, (and the general distrust of pharmaceutical companies) you are bound to have to make a controversial decision.�

�I just decided to shut up on the topic because I was not wanting to argue with anyone over anything and not even wanting to tell anyone not to get it... just voicing my concerns on it when David mentioned it way back when�

I'm Embarrassed to be a Republican

�It was sooooo obvious from the first speaker that the R's minds were already made up. You wouldn't have believed the STUPID and I really mean STUPID questions repeatedly asked of the "experts". For instance..."Can you guarantee that this Vaccine is 100% effective?" or "Can you guarantee that this Vaccine will kill 100% of Cervical cancers?"

I am a religious person. But the Far Right Religous groups is who you can hang that vote on! PERIOD! They carry a lot of clout.(AND VOTES)
I have nothing bad to say about the far right religious except sometimes they are short sighted, They are trying to get morals back in our Great Country.
I don't know if your keeping up on current evens, BUT OUR COUNTRY IS GOING TO HELL IN A HAND BASKET!

A similar bill was talked about in the current Legislative session here in GA. There was a lot of uproar against the bill as another step of the government taking the place of the parent's decision making. The bill had no chance here.

The HPV vaccine has been a matter of great debate on that web site-the debate has had Nothing to do with Democrat or Republican politics- but with #1.A parents' right to choose for their child what is best.

This is less about Republicans and Democrats as it is about the R's desire to pander to the conservative religious right base that brought them many votes.

The point of my post was to share here that we have a long way to go to educate younger generations, as you are striving so hard to do- and this education should be outside the realm of politics. [ I'll admit to being really sick of politics] I don't agree with your last couple of sentances because I have read what these young mothers are debating and it doesn't seem to me to be as much about sex as it is about the fear of subjecting their children to the "unknown".

Why am I not surprised by what happened yesterday in Texas? See; HOUSTON, April 25 � A revolt by lawmakers has blocked Gov. Rick Perry�s effort to make Texas the first state to require sixth-grade girls to be vaccinated against a sexually transmitted virus that causes cervical cancer.
In a 135-to-2 vote that appeared veto-proof, the Texas House gave final passage on Wednesday to a Senate bill that bars the state from ordering the shots until at least 2011. Even many supporters of the governor resented Mr. Perry�s proposal as an abuse of executive authority.

I think the Senate in Tx reacted in 2 ways; 1. They wanted to send a meesage to the Gov saying next time consult us first and 2. The Republicans wanted to demonstrate their control. Up to this point as a Rep I would have voted for Mickey Mouse if he ran on the Rep ticket. I am quickly reevaluating my options. I am forwarding this article to many. Thanks for the site.

Then this completely not left wing but: �I agree but so far I have not found a doctor willing to give a male the shot. Even the university health clinic where he goes will not do it, just for the female students. Has to do with their medical malpractice insurance and the fact that the FDA has not approved it for men.�


It seems to me that there is not peace here on the subject of inoculating young people with Gardisil. Now, also consider that I am not opposed to Gardisil for anyone that wants it (including boys). I am trying to get people to realize that their comments (attacks) about a particular group and their particular overly generalized tendancies, really does not advance the cause at hand - namely prevention and education about OC. Politics is a strange animal for sure but if you beat this strange animal, you are bound to get it mad. Then you will have slowed progress.



Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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Well, I wanted to keep this to a scientific, critical thought provoking issue, and clearly stated in an earlier post that vaccination should not be mandatory but the right of individuals to choose. But there is so much biased agenda based BS out there, particularly on the web, that I do not believe that reasonable people are getting the correct scientific facts. I hoped to have people learn to think critically for themselves, an not buy into rhetoric that has bias, by asking them to explore the questions I posed earlier.

Obviously I have my own bias, and that is to vaccinate, but this is a free country. I am a person that believes that anyone should (as long as it hurts no one else), do as they please, and I'd like my government out of it. If someone is a Christian Scientist and wants no doctors in their life at all, I disagree with them, but I believe in their right to live that way. But watch out if they try to stuff that belief down my throat. That goes for everything from my right to die when I choose to pull he plug, the right of individuals to chose how their own bodies are treated, and much more.

But when it comes to children, the receivers of this vaccine, it is up to adults to make the decisions for them. So I try the best as I can, to get adults to think for themselves, not follow dogma (political, religious or pharma), and come to conclusions that are in the best interests scientifically for the kids.

I am disturbed when the state of Kansas passes a law to actually change the definition of the word "science" (this is for real) so that creationism can be taught there alongside evolution. I am OK with teaching religion, but not in a science class. Why can the two classes not be taught separately? Certainly religion (any one) can be taught in philosophy classes, and they can all be compared. Comparative religion classes are commonplace at every university. The AGENDA of forcing them into science classes boggles the mind. The very nature of religion implies FAITH, and it needs no scientific proof to exist. The definition of science is what it is, and twisting it to serve some other motive is just wrong. I want a complete separation between our church and state, and that just isn't happening anymore. That agenda also touches all things sexual, from sex education in our schools, condom use, to this vaccine.

Having gone into that issue as much as I care to, I am upset when children are put at risk because of parent's bias. But that is how it must be if we are to have a truly free country. So let's have this thread stick with one thing. The scientific pros and cons of vaccination. We all know that there are political, religious, individual, educational, intellectual, philosophical, and many other bias involved in all of this, those biases will not change. But here, where we tolerate the differences that we all have, the only thing that we should be discussing is science. So to all the liberals, conservatives, Christians, atheists, and practitioners of voodoo or what ever, I urge you to please keep those perspectives out of the discussion. We all agree that there are agendas on all sides at play here. So accept that which ever side of the argument that you are on, that we will stay with the science, and not the other agendas that people are involved in, even though those issues are fully at play in the real world.... they are real, we just will not bring them into the OCF board. PLEASE no rants. Please check your sources before posting.

We should discuss the vaccine - and the foundation through its science board, advocates for its use. But we do not insist that anyone be forced to vaccinate if they do not wish to. Because while we cannot do anything in our generation to stop the growth of HPV caused OC, we believe that we can stem the death rate of it in our children's generation. That in itself is reason to work towards its use.


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: Nov 2002
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I agree with Mark about one thing - it was a major thread hijack from whether missing treatments was an issue ot not. And I personally have not "...dragged the topic across a desert from what it started."

On Dec. 6th I attempted to bring the topic back, futily obviously.

I think it's a little strong to call it "senseless banter and outright argument". The HPV topic has permeated the forum with gusto since its links have been identified. If you have been absent for a while you may have missed that. Besides that, I cannot see the "argument" component of your statement and correcting bad information is hardly "senseless banter".

Like it or not, Gardasil has strong and extreme political and religious overtones. That is a fact and we have merely been attempting to present the scientific truth about it and also provide help for a poster dealing with adverse effects issues.

Your political affiliation is of no concern to me and shouldn't be in the mix.

I also resent being quoted out of context.

We administrators have the capability to move topics, split and prune threads, etc., so we have to take some personal responsibility when a thread goes this far off topic.

I personally apologize to Angel for allowing this to get out of control and so far off topic and to Rita for not moving her thread into a separate topic.

Last edited by Gary; 12-10-2008 04:15 AM.

Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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One huge piece of the proposed Florida Gardasil Vaccination Bill that keeps getting conveniently overlooked by those that espouse freedom of choice and parental rights was that there was a OPT OUT feature that allowed ANY parent WITHOUT STATING THEIR REASON to sign a form saying I don't want my daughter to get the shots and that was it.

Also the Florida Bill also would have covered the shots under the Free Shots for Florida Program so that parents that couldn't afford the shots would have gotten them for free. That was done because statistically the underprivileged have higher cervical cancer rates.

How could anyone, absent another agenda, not vote to approve that Bill?


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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