After visiting this board for the past 3 months, I finally joined so I could post some good news...
After two consecutive years of normal pap smears, my 19 year old daughter had an abnormal pap in August, followed by a colposcopy/biopsy in Oct which indicated mild/moderate dysplasia. Her gyn performed a Leep in Dec which determined she was "at high-risk for cancer"....severe dyspasia with positive margins in both the ectoderm and endoderm, as well as glandular involvement. For her follow-up exam in January, she was referred to a gyn oncologist who performed a colposcopy to check post-op healing and also insisted that she begin the series of shots for the HPV vaccine that day. She returned in this month for her second HPV shot and her first post-Leep pap smear/colposcopy...The results came back NORMAL!!!!! The oncologist will continue to monitor her closely with pap smears/colposcopies every 3 months for the next 1-2 years, and her next visit is scheduled in June.
Of course, no one knows what caused normal results when she had positive margins on her Leep....Perhaps the gyn removed all the affected cells when the adjacent areas were burned after the procedure, or maybe my daughter's immune system destroyed any remaining dysplasia while her cervix was healing. She also exercised daily and made changes to her diet by eating more fruits, vegetables, lean meats, and 100% whole grains. She took vitamins....one Centrum Performance multivitamin, one 800mcg Folic Acid tablet, and two Echinacea vitamin supplements per day. In addition, she takes Juice Plus, which are daily supplements of dehydrated fruits and vegetables.
The nurse who called with my daughter's results did have an interesting comment that I haven't seen mentioned on this board. She said that the oncologist was beginning to notice a pattern among patients with positive margins on Leep/CKC procedures...Each patient who started the vaccine series had returned for normal paps. Although the vaccine is only proven to help prevent HPV, he thinks the antibodies might be helping to eliminate the dysplasia. Of course, this is just his limited experience so far with the vaccine...But my daughter will certainly be returning for her final shot in the series!
I want to thank eveyone for the personal experiences and information on this board...It has been so helpful to us these past 3 months! I hope that by posting my daughter's story, someone will be encouraged by the good news!
I'm glad to hear her last one was normal...hope there's many, many, many more to come. I'm also pleased to hear she's able to see a gyn/onc, they're so highly recommended. It sounds like she's taking great care of herself. Shamefully, I still have a couple changes to make...but I'm working on them. Best wishes!
That is great news!!! And very interesting speculation about the vaccine. Who knows? Maybe in a few years all of us who are older and have HPV can count on a vaccine to get rid of it. Wouldn't THAT be nice?
More good news....My daughter just got the results today from her second pap smear since her leep in December, and the results are normal once again!!! She had her second HPV shot in March and is scheduled for her third and final one in July...She'll return to the gyn/onc in August for her next pap.
I just wanted to let everyone know that there is hope...even for those like my daughter with severe dysplasia, unclear margins, and glandular involvement! I check the boards often, and it sounds as if many of you are having normal paps! Yeah!!!! My thoughts and prayers are with you all!
This is great news for you and your daughter and it also gives us all hope. It's great that she's being proactive about her health and taking the right supplements to help her body suppress the HPV.
I also have heard from a couple of doctors that the HPV vaccine can benefit those of us with dysplasia already. They're not exactly sure why, but getting the 3-shot series has some beneficial effects in helping dysplasias clear up! This is why it doesn't make sense to me that they're only giving it to women up to age 26-- ALL women can ask for it and can get it. Thanks for sharing your daughter's story!
Continued good news...My daughter just got the results from her 4th pap smear, and it is NORMAL!!! It has now been a year since her leep, and her onc/gyno is extremely optimistic...He has released her to her regular gyno and told her she does not need another pap for 12 months. Of course, neurotic mother that I am, I will make sure she goes back to see him this summer, just in case. But we are absolutely thrilled with the news!!!!
I have continued to update everyone on her results because I want you to know that there is hope...With severe dysplasia, unclear margins, and glandular involvement, my daughter was certainly at high risk for the dysplasia to return. I am confident that a healthy diet, vitamins, and exercise have contributed to her good health. However, her oncologist insists that the normal results are due to the Guardasil vaccine. He has perscribed this vaccine for all of his patients, and every single one has had normal paps as a result. Even his patients who have had recurring dysplasia for 20-30 years are now having normal results!
When I asked why all the info about the vaccine clearly states that Guardasil does not cure existing HPV/dysplasia, he replied that the medical community is well aware the vaccine is curing dysplasia because so many doctors are reporting this trend....However, the insurance companies do not want to cover the vaccines for anyone else because it already costs too much to cover girls up to age 26. If doctors begin perscribing the vaccine for everyone with HPV/dysplasia, it would cost insurance company billions! It's frightening to know that these companies can have such an influence on our medical care!!!
Best wishes to everyone, and thanks for all your support this past year!
maddie88, that is wonderful news. Thank you for sharing.
Is her gyn-onco absolutely CERTAIN that many women who are already infected and then get the shots benefit from it anyway?
I asked a few doctors and they all said it would be a waste of money, including one who lectures on Gardasil, and one doctor even told me that her patient who had previously tested negative for both hr and lr hpv types got the shot and suddenly developed *both* warts and dysplasia causing the doctor to file an adverse report with Merck.
I guess the most important thing is how long after exposure is the shot still good (assuming it is), or is it the sooner the better? I've had mine type(s) for over a year, so I'm not sure if it would still help?
I really don't know what to believe but I want my hr to go away permanently!
I have a 14 year old who had a "mass" when she was 11. It was 6cm by 6 . Apparently quite large, the size of a grapefruit or more. She had lost 20 lbs in a year and was losing more by the day. Finally her neurology dr ordred an US and they found her enlarged kidneys and the mass. So consults were made and surgeries scheduled. I can tell you my daughter was made to feel like a princess!
Well when she was getting some shots at the Peds clinic I asked about the HPV shot. I thought it would be a good thing for her especially given her health history. A lot of parents think it gives the girls a free ride to have sex at an early age, I think these parents are ignorant of what the shot is for.
I hope that your daughter continues to have good news. Keeping up with the exercise and eating right will be good for her.
When my daughter first visited her gyn oncologist last January, he insisted that she begin the Gardasil vaccine that very day. He told us he wanted the antibodies in her system ASAP. When we received the news of her first post-leep pap in March, his nurse said they were beginning to see a pattern of normal paps with patients who were given the vaccine. Last week, which was three normal paps and a year later, the doctor came out of her examining room to tell me he was extremely confident that her results were due to the vaccine. After 20 years as a gyn/onc, his patients with severe dysplasia, unclear margins, and/or recurring dysplasia are consistently having normal pap results...and the only thing he is doing differently is administering the vaccine!
I was quite surprised to see this "no-nonsense" doctor so excited!!! I really have no reason to doubt him...He is a member of a large, highly-respected cancer treatment center...And the results he has seen are with high-risk patients like my daughter, not women with mild/moderate dysplasia. Most of his patients are referred after their leep/cone results show unclear margins, etc...
We haven't, however, talked to any other specialists....I do know that my 24-year old daugher, who has just moved to the Los Angeles area, was encouraged to have the vaccine by her new gynocologist. When she told of her sister's leep results, the doctor said she was also noticing a pattern of normal paps after administering the vaccine in patients with dysplasia! Again, I have not seen anything in the news or online reporting the vaccine as a treatment for dysplasia, so I can't say this is documented anywhere... But something certainly worked for my daughter!!! And there have been enough successes for these doctors that they are both recommending Gardasil to all their patients!!! I will be sure to post any further information that I find!
As for the administration of the vaccine...It is a series of three shots given over a six-month period. The second shot is given two months after the first, and the third shot is administered four months later. My daughter did not have any negative reaction to any of the shots.
Best of luck to both of you...and best wishes to your daughter, Bhuneke. I know how you feel! It's so frightening to have one of your children go through this!!!
So two different doctors for your daughters have noticed, independently of each other, a positive correlation between getting vaccinated and normal paps even after infection with one or more types of hpv? That's very interesting--I believe one of LAgirl81's doctors noticed something to this effect too, but it's not conclusively known either way whether vaccination after infection and development of dysplasia also confers a therapeutic effect. It would be awesome if it did!
I guess if I am not cleared by this December at the latest (my 2-year mark) after naturopathic therapy, I shall be getting the vaccine. I asked all 3 of my doctors, including my gyn-onc who gives Gardasil lectures, and they all said it would be a useless waste of money and one even said it might be harmful (?).
Thanks and best to your daughters! If you get a chance let us know she's still doing ok! It's very helpful news.
I will definitely keep you posted, although my daughter won't be having another pap until this summer. I just found it interesting that my daughter's gyn/oncologist is having so much success...and that he said many other doctors are having the same results. The fact that my older daughter's gynocologist on the West coast told her the same thing makes me believe him even more!
Of course, I would have thought there would be information out there for us all to see....But again, the oncologist's statement to my daughter was that the insurance companies have intervened because they do not want the expense of covering vaccines for the large number of women who now have HPV/dysplasia. If this is true, I find it alarming to think insurance companies can dictate our medical care!!!
Is there anyone out there who has heard similar success stories about Gardasil treating dysplasia?
Insurance companies have WAY more clout than they should--so I wouldn't be surprised--although I'm not convinced that this clout is what's at play here. I did read the studies that showed almost identical rates of unvaccinated v. already-infected-then-vaccinated groups, although I suppose it's possible the study was "bought."
I think the question is how soon should the vaccine be administered for any potential therapeutic effect? I know your daughter's gyn-onco wanted it done immediately--how long had she been hrhpv+ when she got the Gardasil? I'm already past the 1-year mark at 14 months, so I'm not sure if it will help or hurt at this point since I discovered my hpv rather late in the game. Can you ask about this during her f/u?
I know LAgirl81's gyn said she'd seen a similar trend to the one you reported. However, when I tried to follow that up with the 3 gyns I consulted (one of whom is a gyn-onco), they all denied any therapeutic value and said it would be a waste of money since I'd already been exposed.
I even contacted an hpv researcher, and she said it would be useless, since preventive and therapeutic vaccinations operate under completely different mechanisms. However, scientists (like doctors) are not always correct. One theory I have read floating around is while the body is producing antibodies to the vaccine, it is forced to "see" the hpv infection that is already present, and attack it.
It would be wonderful if Gardasil/Cervarix did confer therapeutic benefit, even if less than given preventively, because there are many other female hpv-related dysplasias to be concerned about and a lot of women were born too late for Gardasil. If not, let's hope Transgene's cure is effective, with no side effects, and passes FDA scrutiny soon. It's amazing how little is known (or at least disseminated) about hpv given that it is the oldest STD in the book.
Again, thanks for your sharing your info! You sound like a great supportive mother and I'm sure your daughter appreciates this so much.