I had to have a pause in treatment for about 1 week of radiation when I was very sick and in the hospital. Then I went for rads Mon, Tues, and Wed. and they were closed for Thanksgiving on Thurs, and Friday. So all in all I lost 7 days of radiation. What I am worried about is what kind of problems that may cause me in my treatment? Does anyone have any answer to this question or has anyone else had to have a pause in their treatments and if so did it cause them problems? My Rad. Dr. said I have had enough chemo as I can't take anymore. They haven't been able to get my WBC count up even with the shots they have been giving me. Thank you, Angel

Angel

Not a doctor, just a fellow survivor with some reassurance. I was just as worried when over the course of 40 treatments, I "missed" not one, but two weeks due to the radiation machine getting out of alignment. Sometimes they would call to cancel just as we were walking out the door that afternoon, other times we would not find out until we had been sitting in the waiting room - very frustrating. From what my doctors have said, and my tests results this last year - no problems at all from the break. Hope your WBC count rebounds soon. Hang in there

SCC is a very aggressive cancer and the current thinking in treatment is to hit it hard and fast so to speak and no breaks in the radiation would fit that thinking but remember they also "give" us Sat and Sunday off so they already break the rad up somewhat. I was fortunate that I didn't have any breaks (I guess) but there really isn't any definitive way that I know of to measure if your particular break could really make a difference so I wouldn't worry about it at all. Now if you are HPV+ which you don't say, then a study has concluded that HPV+ SCC responds better to the Tx compared to HPV- SCC so that may also affect this discussion.

Are you making the lost days up?

Angel, I had to take a "break" on two ocassions. The first was to put in a feeding tube as my mouth was so messed up. Second was toward the end of tx. My RO pushed to get me back in as soon as possible but never expressed concern about these delays ( one was for a week and the second was 4 days ). I personally think you can take this off your worry list.

Charm, Thank you for your reply. I have been taken off the cisplatin after 5 weeks of treatment (once weekly with rad daily). I am still however concerned with the Erbitux they are wanting to give me. The cisplatin didn't bother me until the 4th week in but then it knocked me for a loop. I was hospitalized twice. I am so afraid to take the Erbitux because I don't know if my body can take any more. Angel

David, I did not get the Dr. to agree to check for the HPV connection. He was totally against it. I however did try my best but with no results. Thanks, Angel

Ray, Yes, I am making up the days I lost during my hospital stay. Thanks, Angel

William, That was one of the last reasons I was hospitalized (other than malnutrician and dehydration) was to get a peg tube but they couldn't get my WBC count up enough to do it. I am working real hard to try to force feed myself with ensure, grape juice, V-8, and oatmeal or anything soft like that I can get down. Thanks for your response. Angel

Angel,

He is totally against testing you for HPV because of.....WHY?

I'm sorry but it is your body and your cancer and you're not his child asking for a new I POD and so on, so if you want the slides tested then TELL HIM either he will send them off to Johns Hopkins or give them to you (cause their yours) and find someone that will.

Angel, hang tough and keep us updated!

David, Good idea! This is the ENT that doesn't like me to ask him any questions "at all!" Nice Dr. otherwise but can't get him to do much of anything. If I hadn't of went to see the Chemo Dr. and he ordered more test to determine if I needed chemo before rads started, they wouldn't even be treating the new areas on BOT on right and left with radiation and chemo and I wouldn't have known that the cancer had already started coming back as this was due to their waiting so long for my treatment to begin. Initially the cancer was found in late March, I had surgery in June and Rad and chemo started Oct.15th. This is what I get when I didn't have a secondary insurance and was unable to go to a CCC for treatment. Thanks, Angel

Willian, Thanks, I will. Angel

[quote=davidcpa]He is totally against testing you for HPV because of.....WHY?[/quote]
Likely money for testing that won't effect the treatment or outcome...

Pete, I think that is it, because the testing won't effect the treatment or outcome. Thanks, Angel

I respectively disagree. In my case I felt vindicated that I tested positive for HPV since I had devoted my entire adult life to not smoking, exercise and eating what I was told was good for me. It also improved my mental outlook when a study concluded that HPV+ SCC responds better to treatment and is less likely to reoccur. Whether or not that ever proves to be accurate at least it improved my mental outlook at a time when it was surely welcomed. If I was Dx'ed today with SCC in my tonsils or BOT I would request to be tested for HPV as there is a 70+% chance it would test positive. Besides the more HPV+ patients that scientists can track, the chance that they can learn more is greater and the better the conclusions.

David, I sense that you really dig into a problem until you find an answer, which may be why you are a CPA and is why I think you are very good at it. Most of us don't have that urge as strongly and the windshield makes more sense than the rear view mirror.

No guarantees that lifestyle, or lack of it, will keep us around longer -- Ask Jim Fixx...

As to tracking, that's why they gather data in one place for analysis; I believe it's highly unlikely that independent testing results are going to go there.

OTOH, if it made even a slight difference in the course of treatment, then the money spent would be justified.

Of course, it might help the Doc's place potentially more accurate survival stats on a particular patient, but I know how bad those stats are in the first place, having had cancer come back to an area that was specifically irradiated. It also might help the victim to know where the cancer came from, as it certainly does in your case, but it might not.

My CCC doctor immediately dismissed HPV as proven as a cause and he had just returned from a medical cancer conference where it was discussed.

Angel,
I missed sevral days due to illness and machine downtime. They just extended the end date. What is important is that you get all of your Greys (or fractions of treatment). The RO's grumble about it but I think that it's more of a scheduling trainwreck for them since the machines are in such heavy, constant use. You need the weekends off so that your tissues can heal a bit.

Even if they discovered that HPV caused yout cancer (which Brian and I both suspect caused ours) there is no good test for it unless a. it's active or b, they can furnish a sample of the original biopsy material to a lab for analysis. In any case, it doesn't change the results or the treatment plan. Your insurance won't cover the cost of the test in most cases (for a sample of the biopsy material to be sent to a lab). Many ENT's consider it to be academic once you already have cancer. I could have gotten my biopsy sample tested but I don't care at this point.

My RO (at the CCC) informed me this week that they don't follow cancer patients after 6 years anyway and refered me to my PCP for future followup, which is semiannual anyway, by the head & neck surgeon.

David, Out of curiosity, what was the size of your tumor?

Gary, I never thought about asking my RO how long he'll be seeing me, but he did mention he watches his patients in my situation very close for two years and I think he said every 6 Mo's to year five (I guess he did tell me). My ENT gave me the same info except after year five he wants his patients to come in annually. He also said he just released an 80+ year old patient that had OC 20 years ago and a 38/39 year old had his 13th anniversary but that the 80+ year old was released because of age. I suppose that was his way of telling me I'll be a patient of his forever.

They say that HPV doesn't change the tx but yet those tumors respond better to radiation. If I had a BOT HPV+ tumor I would opt for radiation and chemo as my first attack rather then a total glossectomy. So, why do they say it doesn't change the tx plan if your tumor is HPV related?

My RO told me that had he known that my SCC was HPV+ he MAY HAVE treated me less aggressively. Remember I "only had" the rad and chemo so I still don't know what he would have cut back on and knowing what I know now and knowing how I turned out, I'm not sure that I would have wanted to be some test patient but hopefully HPV research and testing will continue and these and plenty more questions will be resolved. Hopefully one day Gardasil and other vaccines will eliminate HPV caners all together. I still advocate getting tested for HPV, especially if one fits the current profile. I don't see any harm in the treating facility having that knowledge.

Ray,

Sorry just saw your question. My cancer was found first by a FNA of one of 2 suspected nodes. They told me it was appx 2 cms. After that I ended up at Moffitt and they put me under to find my Primary. I fully expected waking without my tonsils but when I woke my wife said the surgeon found my Primary at the BOT which was the first spot he biopsied. He told her he was so small that he thought the biopsy removed it all and he decided to end the procedure so no ice cream for me. Even that little bit of cutting in my throat left me in some pain for a few days and I can't imagine what some of you have had to endure!!

when i had my surgery which was to remove some of the palate, upper jaw etc ... i woke with a lot of pain in a lot of places, was bleeding from my throat and it was so so so so sore i could not swallow meds and swallowing even water hurt so bad ... nurses acted like i was making it up which made me so angry - because i wanted to get better, i was trying my best ... anyways long story short in about 4-5 days it was enough better i could swallow better but not great .. when i got home i found they had cut / tore / biopsied >???< my tongue, throat, several areas around my mouth ... and they had cut the lip in two places (which they had apologized for in the hospital) they had not just done the surgery like they said ... once i saw that, where my tonsil was actally cut and looked different than the other side ... then i understood all of the pain and showed hubby because he bought what the nurses had said thinking i was making things worse than they were (as if i had ever done that in my life before argh ...) but anyways once i had him look he then understood fully what i had gone thru.

David, I hope too for a cure for HPV but careful what ya wish for concerning gardasil. do a google search for that stuff and type in gardasil complications. Many have died from that stuff and many many more have suffered awful side effects and they sweep it under the table and keep pushing it.

i encouraged my daughter to get the shots and she did... now i wish i would not have and i just pray she has no more bad effects from it.

also merck admits (ever so quietly) that they have no idea if one series of shots will work long term - women may need more shots later - there are also no long term studies to prove it even does what they claim to help ... but the evidence is in strong about women having major complications from it.

anyways ... good to be informed on these things and not buy the ads the company sells... this stuff SOUNDS great - like new found hope - but it comes with a pricey label for these little girls being forced to take it.

more than 8000 reports of bad side effects in the year 1/2 since they started using it... plus 18+ dead.

gardasil - $360 for EACH of the three required shots ... any doubt why merck is pushing it so hard and trying to get the gvt to make it mandatory? HECK don't talk about the cons ... we want $ ... talk about how it MAY errr i mean WILL help yeah thats it ... the world live better without HPV ...

how about lets try imagining a world where big pharma does not risk the population for their new budgets and christmas bonuses.

a new study now shows gardasil is causing auto immune problems in many patients ... along with the myriad other problems *such as stopping the menstrual cycle for these gals in their child bearing years ...which is what it did to my daughter*


sorry - this is a touchy subject with me ...

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

yeah have heard a bit about that but not much here in wa .. since it does nothing to prevent pregnancy etc it really is not even relevant to the cause of that argument ... main thing i have seen / heard are mild to severe effects from it and merck sayin oh that cant be the drug ... uhuh sure it cant ... that is why it is hundreds to thousands of gals who have gardasil in common having the same problems

Where did you read about these side effects? Any links?

Google is your friend!

http://search.yahoo.com/search?p=gardasil+side+effects&ei=UTF-8&fr=moz2

My daughter got her first round of guardisil in Sept. She got several shots at that time including a shot for the flu and a chickenpox booster. She had not one single reaction to any of the shots. Next week is her 2nd shot of guardisil. I dont expect her to have any side effects from it but will post if she does. Out of the girls in her class, she is the only one who has gotten the shot. There are pros and cons for having this shot. I prefer to try to protect my child from becoming a cancer victim in the future.

I realize I can google this, what I meant was where is the actual documentation of these dreadful side effects and death? The most serious side effects I have seen have been sore arms and some fainting. Granted, this immunization does hurt more than most, but for what it does, I think it is worth it.

As usual, I think the internet has been promoting fear with no actual evidence. One can google virtually anything and find "proof" that it kills.

There have been reports of anaphylaxis or allergic reactions but only for some reason in Australia, and no one died from them. The company is investigating these.

As for how long immunity lasts, that is an issue for any vaccination. Many require some booster at some time. Tetanus requires one every 10 years, does that mean it is a bad vaccination? You cannot know if a booster is required in 10,20,40 years etc until that time has passed since starting vaccinations. Should vaccination be delayed until decades have passed for this to be determined?

http://www.steadyhealth.com/Gardarsil_shot__Late_period__Negative_Pregnancy_test__t108560.html


http://www.medicalnewstoday.com/articles/63586.php


http://www.thebostonchannel.com/health/17557347/detail.html


bunch more if you wish to read more. i didnt look it up until my own daughter had problems.

note it has not been proven to even work - and if it does work it only will work on 1-3 of over 100 strains of HPV out there.

not going to argue with anyone over any thing but also will not stand by and say something is grand just because the company making the $1000 PER PERSON is spending millions to push it - lets look into it for ourselves...i did - very extensively...

just hate to see people taking everything for granted because someone said it was good.

Rita - you are misinformed here and your points are not thought through. Yes it only works on four of 120 versions of HPV - but only versions16 and 18 cause cervical cancer, and only 16 causes oral cancers. So the bottom line is who ares if it doesn't do anything for the many other versions that appear to have no negative impact on our bodies when we get them? You want a universally effective magic bullet? It does not exist in any medicine.

The web is full of misinformation and "urban myth". The science behind this is good. I could post a page and a half here about the research that went into this, but I will leave you with this one thought. The most important thing in the world of vaccines that was ever produced and saved hundreds of thousands, was the polio vaccine. Some people had adverse reactions to it, the actual results of the program (like any new product) wasn't known for a couple of decades as the clinical trial work and short term 5 year tests were positive enough to take it out to market. HPV vaccines (and so many others that we have used for decades) are no different.

There are tons of people against vaccines in general, that wrongly think they cause autism and more. I lecture on these things almost every month, and I work with independent researchers, not just the doctors behind the development of this particular vaccine that understand and believe that this is the most import progress we have made in preventing the mandatory precursor event that will cause a cancer in their lifetimes. If those of you with questions are going to want absolutes in life, vaccines, or whatever, you will be sorely disappointed. We are all unique biological entities and nothing, even aspirin, works the same in all of us. The question is - will the overwhelming number of individuals benefit from it.....

As to the side effects for the rest of you who have worried about this, there can be some. But the question is are they a direct cause and event tie to the vaccine? The FDA does not think so. And the ones that do have a cause and effect, are not life changing. Further, are the number of adverse events and types well documented, by whom, and is it different that similar biological events occurring in the unvaccinated population? Then answer to that last question is, it is the same.

This is a personal choice thing. No one is forcing anyone to get vaccinated. And that is the way it should be. Where it will have profound impact is in third world countries where cervical cancer screenings and pap smears are just never done, and cervical cancer is a huge killer.

azcallin - I am fighting to not even reply to your post, but I can't help myself. Your numbers are not substantiated by the FDA, nor has any death been directly linked to the vaccine. If it had caused 18 deaths it would have been pulled by the FDA from the market if they could document it as the direct cause. This is just urban myth spreading, and you are part of the process that perpetuates it. Your medical news today post was from Feb of 2007, and there are now more than 18 million young girls vaccinated in the US and millions more in 41 other countries. What is the ratio of severe reactions in the vaccinated group to a group of equal age, gender etc. that was not? About the same. The fact that their study had 1200 hundred girls in it is irrelevant at this point in time, given the numbers that have been treated. Your steady health organization information, is from an unregulated, unmonitored, public forum where someone could post that they think the moon is made of green cheese. That isn't the basis of any usable facts and would appreciate it if you would not post links to public forums that are not monitored on this web site as ssources f usable facts. Lastly, the ABC TV story has a young girl, with no medical documentation or proof, stating that the vaccine made her sick. She knows this because of.....? Timing? Coincidence? Her medical experience and degree? The news story also includes this statement: "Experts at the FDA and CDC also continue to review data and, in July, said 'Gardasil continues to be safe and effective, and its benefits continue to outweigh its risks.'" I'm sure the girl got sick. But proof that the vaccine caused it? Doesn't exist. Could be though. She is a unique biological entity, and the vaccine and her genome might be a bad mix. But this is not evidence based information worth posting as fact. If we do not look at things based on evidence instead of opinion or heresay, you might as well belive that eating Big Macs is good for your heart.... I'm sure that if McDonald's has any bloggers out there talking about the burgers they love, there are some that have this viewpoint, and continue to stuff them in their faces and post that they are healthy on open forums. The web is a free forum for people of all intelligence levels, knowledge, and agendas, to have their say. Readers!!! Be a critical thinker, or suffer the fate of not understanding or getting the right information.


The shot does not cost $1000.00 Even if it did, and it prevented you from getting cervical, oral, anal, penis, and perhaps other cancers that we are just now developing data from, I think you would find that cheap compared to hundreds of thousands of dollars for treatment, or of course DEATH.

I agree with what Brian is saying. It is very common for young girls to have irregular periods, usually simply due to hormonal fluctuations that tend not to stabilize until well into the 20's.

As for Guillain-Barre syndrome, many vaccines can rarely cause this, and it is more common with multiple vaccinations at one time. It is advised to give Gardasil on its own to lower the chance of this happening. The flu vaccine by-the-by, is a prime offender for Guillan-Barre.....and its protection is known to last only 6 months....

I just want to add that the flu shot still as an exceedingly low side effect rate, and the benefits of it usually outweigh the risks....

even with the flu shot, a new study shows it is ineffective for most seniors over 70 and that is who they advertise to the most...

i am not anti shot for the most part dont get me wrong but i am not for every one they push just because they push it

i just wish i would have investigated on my own about gardasil before i told my daughter to get it ... but too late now - just hope the effects she has had are not long term

when my daughter had problems with it and we went to report it they would not even accept the report - said it was not one of the listed side effects of the drug ... yet a forum like this one showed tons of gals saying the same things happened to them after having the shot and they were looking for answers too ...

anyways i am just saying look into things before choosing them - i am not saying dont do it - that is up to each to decide ...

$366 per shot is the price of gardasil and you have to get three of them. it is reported to be more expensive than all childhood immunizations put together.

- and when i said 18 deaths i just noted on cdc.gov there have been 27 reports now ... but they dismiss them for the most part being excused for other reasons ... because there wasn't a common pattern ... except all had had the shot ...

while my thoughts may not be well documented in these postings due to not wanting to make a dauntingly long post on something off topic, i was merely meaning to make a mention of it to david because of his mention of the shot ...... my thoughts on the matter are nor sparse or scatterbrained because i did a lot of investigating into it when my daughter had the problems she did because it got downright scary. my sources were not internet scare sites they were real people having real problems, and medical field documented cases and TV and Newspaper reports.

anyways - not wanting to make waves - and like i said, it is up to each to decide for themself, far beit from me to tell anyone what to do or not do ... i was simply sharing what i had learned after telling my daughter i thought it was a good idea.

one more point so we have correct info - there are 15 high risk forms of the HPV virus which can cause cancer... 16, 18, 31,33,35,39,45,51,52,56,58,59,68,73 & 82. and then another 15 of them are possibly related to cancer.... but 16 18 and 31 are the only ones most people hear of...


*see wikpedia*

I just pulled this off the CDC site this morning:

"Safety of the HPV vaccine
This vaccine has been licensed by the FDA and approved by CDC as safe and effective. It was studied in thousands of females (ages 9 through 26 years) around the world and its safety continues to be monitored by CDC and the FDA. Studies have found no serious side effects. The most common side effect is soreness in the arm (where the shot is given). There have recently been some reports of fainting in teens after they got the vaccine. For this reason, it is recommended that patients wait in their doctor�s office for 15 minutes after getting the vaccine.


Cost and Paying for the HPV vaccine
The retail price of the vaccine is about $125 per dose ($375 for full series)."

There was no data on serious adverse effcts or Medwatch reports on the FDA website. See: http://www.fda.gov/cber/products/gardasil.htm

Also: http://www.fda.gov/cder/drug/DrugSafety/DrugIndex.htm

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.

Further complicating the adverse effects data is the fact that it's possible that the adverse effect may not even be related to the medication. FDA guidelines are that ALL adverse effects must be reported whether or not proven to be related to the medication.

It's effect is to make it almost impossible for the average patient to sort out what is a legitimate concern or a rare or even unrelated anomaly. That's why oftentimes, a consult with the pharmacist is a good idea.

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.

The ultimate decision here has to be guided by risk/benefit like all decisions for medical intervention.

I noticed that when I Googled side effects, there were a number of legal sites trolling for people's reports -- That usually indicates to me that there's a major disconnect between perceptions and reality.

Thanks gary - i agree when something is new it is kind of a wait and see because there will be real info and false info in the beginning, so one has to decide for themself on that risk benefit scale.

i would like to know where you found it listed for $125 a shot though because they charged us $366 for each one not 125 and that was not for the doctor visit (wasn't even the doc who gave it but wanted to make it clear that it was not the doctors bill but the bill for the shot itself)

have a good one

The problem with a wait and see attitude about HPV, is that it is a very commonly acquired, sexually transmitted virus. The CDC says that in their lifetimes, 80% of the entire (300million) American population will have had or have some version of it. Since the vaccine only works if you have NOT BEEN EXPOSED to the virus, then waiting until a child becomes sexually active greatly diminishes the odds that it will be effective in them, as they likely will have encountered the virus already, negating the positive of the vaccine and making it useless.

Here are some questions that you should ask yourself. When you have answers to them, please compare them to the risks of this shot. Post them here so that everyone can have a frame of reference.

How many kids die from a bee sting in the US each year? Is their any way, before you take your child to the park for the first time in their young lives, that you can know if they are one of the few that will have a catastrophic event associated with being stung? If there is a way to know, did you do it?

How many people died from the polio vaccine, or had an extreme adverse reaction to it? Compare that with the Guardasil numbers. And this is the most successful vaccine ever produced. Nobel prizes given for its discovery.

How many children die in the US each year from an anaphylactic reaction to peanuts? Is there any way that you can find out they are going to have this happen before you give them their first PB and J? If there is a way to know, did you do it?

How many individuals spontaneously die before the age of 25 with no known risk factors, like a heart issue or the like? How many do we have the opportunity to prevent?

When you know the answers to these questions please post them here. I am not going to do this exercise for you, though I know the answers. But what I want people to get out of it, is to learn, and to be able to evaluate for themselves, the lesson of proportionate thinking and risk taking. I bet you took your daughter to the park without knowing the answer to the bee question. I bet she also had her first PB and J without you knowing that either. This doesn't make you a bad person, It makes you normal. So why be driven by a minority, alarmist, heard mentality on an equally important subject?

Lastly your list of the HPV's that cause cancer is not correct. There are some in that list that have been associated with cancers, but as a synergistic sub-type, and not the causative agent. So the list isn't actually as long as you make it seem. There is a difference between those that produce direct oncoproteins that change a cell, and those occasionally are found in synergy in cells where a primary known oncogenic HPV has done the damage. More so, THIS IS IMPORTANT - oncogenic HPV's are site specific. If you looked at a peer reviewed paper, and there are some benchmark ones in the New England Journal of Medicine, that talks about oncogenic HPV's as they have been researched in cervical cancer, most of them are not found in oral, anal, penis, or other cancer sites associated with HPV. So the question is, what is important to THIS group of oral cancer people? Only one, and that is HPV16. Bottom line, there are 9 known oncogenic HPV's all but one are not of our concern. There are 5 suspect versions that have yet to be proven oncogenic, but suspect in other anatomical sites (not oral). I just got off the phone will Gillison at JH to confirm that what I am saying is fact.

Rita,
the qoute was right off the CDC website, including the amount estimated for the injections -that is why it is all in qoutes. I merely cut and pasted it.

Since Gardasil had been through all three clinical trial phases it's not actually "new" anymore. It's actually been proven to be safe and efficacious. It was fast tracked through the FDA however so the typical 10 years of clincial data and review are not there but the FDA is watching it closely. The patient sample size was over 21,000 and they had very few adverse reactions.

I would challenge them on the price

Current CDC adverse effects detail: http://www.cdc.gov/vaccinesafety/vaers/gardasil.htm


CDC link for costs:
http://www.cdc.gov/std/HPV/STDFact-HPV-vaccine.htm#hpvvac4

I just re read my post on all this vaccine stuff, and of course I came across harsh (as usual), and I apologize for that. I have this vaccine argument with at least one person a week for over a year now, and I am perhaps tired of it, and tired of the agendas of the anti-vaccine groups that have nothing to do with science.

Most, if not all the medical professional types I have talked to about the vaccine all are in favor of it and have given it to their sons and daughters. All have also told me of the tracking method that follows a patient from the injection and as has been said the major post injection problems are not linked directly to the vaccine but rather it's just that a person that received the vaccine later (say) died. The same would be said about people who ate McDonald's hamburgers if all post McDonald hamburger eating incidents were required to be reported. So a person eats a hamburger from McDonald's and the next day is run over by a car and dies. An internet site will surely pop up and say "people die from eating McDonald's hamburgers" even though the death cert will say death by being run over by a car.

not a problem, Brian. 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 guess i am just touchy on it because i have not just read about it but have experienced a problem with my daughter and I hope it has not created a problem for her that will show up later as not being able too have another child, or some other problem above what she has already experienced etc ...

and i got highly irritated when we tried to report her problem (and to inquire as to if this had happened to others) we were told it was not on their list of side effects so they would not even take the report or offer info. well, she is not alone in her problem and had never had such a problem until the shot. periods should not stop for 4 months (then start again and go ok until your next shot and then stop again) ... this worries me. why did it do it and why won't they acknowledge it and what are the true lifelong implications of it ...? i guess only time will tell (which is what i meant by the wait and see before ... wait and see what happens to those who have had it)


But hey I was the one who suggested to her that she get it (probably why her having problems with it bothers me so much)

so no harm done - probably a good time to drop the topic or heck erase all of the posts about it if you wish, wouldn't bother or offend me

have a good one

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.

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.

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.

whoa where did that come from?
.. who guards the guardians?

M

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.

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.

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.

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?