Aldara

Hi, 1 1/2 years ago I went to the Dr for what I thought was symptoms of the change of life, dryness, redness etc well after a biopsy I have vulvar cancer, first laser surgery, then excision surgery, now after the 2nd operation 6 months later it is back in 4 spots, but they say it is precancerous right now, now I am trying Aldara, just one treatment and I am a wreck, I know I have the best Dr in Boston for Vulvar Cancer, but won't I get more problems with sores, redness etc to get rid of the cells. If anybody has this also, will it keep coming back for the rest of my life. My Dr is a little puzzled why it keeps coming back as I haven't smoked in years, he said it usually comes back from women who do not quit. Are  all of the women with Vulvar Cancer previous smokers. I know I am talking in circles, but I am going to work, I am also nervous as I am a fair, redhead that has skin issues down there anyway. Anybody that tried Aldara, please write.

Thank you, Karen

 

 

 

Hi I'm really sorry you are having such a hard time. I haven't used Aldara yet, but it is on the cards. My Dr explained that it would be terrible, and the way it works is by causing your body to react to the sores etc so it recognises the problem and works to fix it. For some reason, the HPV etc hides in the skin layers, and cant always be detected until the Cell changes.

As for smoking, I have never smoked. I supposedly in a small percentage (2%) of women who suprise the Dr, because of not smoking.

Do they give you pain meds or any advice on how you can be more comfortable using these creams?  Its bad enough we have to live with the thought of this coming back.

Hi , its weird but I don't have HPV Virus. well I have used the Aldara twice now, and I can already feel the spots more than before so I guess that means the skin is starting to get irritated, yipee, I am so tired of this. How much surgery and such have you had to bear? I guess alot more women than I think have this, but it is still not  known about and it is not a cancer you like telling people you have, they always think the weirdest stuff and it makes me feel like you know. I wonder what the % of women do actually have this.

TTYL

 

On 5/9/2008 tuscan wrote:

Hi I'm really sorry you are having such a hard time. I haven't used Aldara yet, but it is on the cards. My Dr explained that it would be terrible, and the way it works is by causing your body to react to the sores etc so it recognises the problem and works to fix it. For some reason, the HPV etc hides in the skin layers, and cant always be detected until the Cell changes.

As for smoking, I have never smoked. I supposedly in a small percentage (2%) of women who suprise the Dr, because of not smoking.

 

I had VINIII and had it excised in 11/07.  I see a gyn oncologist every 3 months.  I see her again 5/08, she also stated that there are "creams" on the market that we could try if needed.  It did sound that it was "when" the time comes.  This is always on the back of my mind and I hate it.  I have tried to reduce the stress in my life "whatever", I work in a very stressful job and there is not much that I can do about that.  I do not smoke, have been married to the same man 32 years and I to do not have HPV.  I love this website and feel more at ease to know that there is some support and there are others going through the same thing  and unfortunately some much worse than I have endured.  I do not tell people the details of this rare female condition, they don't understand, and I just don't want to explain it.  I did go to a walk in health clinic, the nurse asked me my medical history in the last year, when I said that I had been diagnosed with VINIII she looked at me with the deer in the headlight look.  Not even people that deal in the medical field know about this virus.

Hi there - I am in the UK and by the sounds of it all you ladies are in the US.  I have just started with Aldara (5 sachets in, used the last one on Monday just gone).  I think Aldara is still relatively new over here for the treatment of Vin3.  I had to see my GP yesterday as I was in absolute agony and she tells my that my vulva is badly ulcerated and has asked me to stop using the cream until she gets back to me - she is going to contact my consultant to see what he thinks (which won't be too much I don't think, as he had to take advice from elsewhere before prescribing it for me) and also see if she can get hold of any more 'specialist' type practitioners. 

 My vin3 is very widespread and I think the only option if this doesn't work is a vulvectomy - which the very thought of this reduces me to tears.  I am apparently quite young to have it and I know what you mean by not wanting to explain to people what you have.  As soon as you mention that it's the wart virus they all get the 'oh yes you must have slept around' look on their faces.  To be honest, I thought that my husband had been doing the very same when I first found out.  The US does seem to be more pioneering in some fields and I wondered if any of you ladies know of other options that may be available?

The side effects look horrendous when you simply read about them in the medication leaflet, it took me a fortnight before I started using it!  It is also a contradiction in itself as it tells you not to use it if you have open sores, yet it causes open sores - so is it okay to use on the sores that it causes? (That was hypothetical, I wouldn't use it on the sores).

Anyway, I am going all over the place as I didn't plan to be posting messages, just stumbled across the site whilst looking for further info.  It would be great if any of you could post further in response - even if it's just to let me know whether or not you have had success with Aldara, which would give me some hope that all this hassle may be worth it - or have you had worse side effects (there are some horror stories out there as well - esp from patients who have completed the treatment and side effects seem to appear much later).

Kind Regards

Sally 

 

I'm so glad that you stopped and posted.  I also did not plan to post but being able to discuss this matter with others who understand is healing.  Are you seeing a gyn oncologist?  If not, please see one immediately.  Even though this is "only" VINIII it is very serious.  I don't care if we are in our 20's or in our 60's no one wants a vulvectomy .  It makes me sick when I hear/read that a lady in her 60's doesn't need reconstructive surgery as much as someone younger.  WHAT KIND OF GARBAGE IS THAT?  Losing our female parts is devistating no matter what age.   Just know your not alone. 

Hi everyone. I had CIN3 in 2004, had a LLETZ procedure, (similar to LEEP i think). Went back for all my follow up colposcopies/smears etc. All ok. Then in Dec 2006, I had HPV DNA test done, it came back positive. I couldn't believe it. The sad thing was, I didn't even know the connection of HPV and CIN/VIN etc Let alone cancer. (Even the advertising for the vaccination doesn't mention HPV) Maybe they should, then most of us wouldn't feel like we are carrying around this stigma. Anyway sorry, getting off track (just get annoyed).Then 1 year later I had another HPV DNA done, it came back negative. MMMM now this is where it gets confusing. I have just had surgery (wide local excision) and biopsies on my vulva for VIN 2/3. Evidently caused by the same HPV, which I tested negative to Jan this year, but the biopsies of my vulva say I have the HPV on my vulva.

What I'm getting at is this...if you test negative (via smear/internal test) it doesn't necessarily mean you do not have HPV. I never had any signs of it.

The Aldara is supposed to cause sores etc, as it revs up your immune system so it knows where to fight.Usually women who end up with VIN are the ones whose body doesn't seem to fight the HPV (although some do). Causing sores, makes the body seek and heal, hoping that the result is no more HPV or VIN. If you have a really bad outbreak of sores, I believe the Dr's do get you to ease of the amount of treatment. I have also heard, if you dont react, it might not be working. Odd I know, and awful too. But, I think it is a better option than a vulvectomy.

Good luck to you all. Keep us posted on how you are. Here's to good health.

Hugs

 

Ladies,     There is a way to have Vulvar cancer without HPV. It stems from Lichen Sclerosis, a skin condition of the vulva. If you are diagnosed with the condition(with biopsy) you should be biopsied all along to see if and when it develops into cancer. Vulvar cancer is VERY rare but from LS it is extremely rare. ...BUT I'm here. I had a radical vulvectomy and had my lymph nodes removed I had positive nodes on both sides - so it is Stage IV. I had a radical, radiation and chemo. It was hell - but I'm here. My gyno was ignorant about it being possible without HPV. He is a well known gyno in Charlotte and North Carolina. Good Luck!!

 

 

Hi Sally and others, I am Karenthekat, just call me Karen, well I am into the end of my first month of Aldara, I am very sore and uncomfortable the day after the application, it feels like I did after my second surgery. Then after a couple of days it gets better, but then it is time for another dose.

I just keep thinking this chemo is topical and I could be alot worse and have to have it intravenously, I am also doing Estrace Hormone Cream the same nights as the ALdara, because my vaginal canal is so red, but as you said, the Aldara creates more sores, but I think the Estrace helps it not be so raw, ask you dr about it. The Estrace is done way up with an applicator. I have also been sick some days after the application and had really bad hip aches (that is probably old age) as I am 55, and I do have some osteo.

I just get to down because I finally get my life in order after life's disappointments and now dealing with this sucks(excuse me)

I am so glad everyone is writing so we are not the only ones.

Everybody, keep a chin up and let's talk again.

Karen