Vulva cancer

Affected by VIN (a pre-cancerous condition) or vulva cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

High grade VIN

fifi65
Posted by

Hi new to this group, I have suffered with Vin for many years now, had laser, excisions and what seems like hundreds of bi-ops, I thought I was having a break, but no, it’s back in abundance, had multiple bi-ops mapping done couple of weeks ago, I’m currently trying this Aldara cream( only done 1wk) it feels like I’ve been scalded, and maybe infected. Does it feel like this for the full 6 weeks of applying it? Any tips on how to ease the symptoms please? Tia xx

latchbrook
Posted by

Hi and welcome to the online community

I haven't had this treatment but noticed your post hadn't had any replies yet. I'm sorry to hear how painful you're finding using Aldara (Imiquimod) cream is.

You should have been given a leaflet from you hospital when they prescribed this treatment telling you how to apply it and what to expect. I don't know which hospital you attended but have found this information from Royal Berkshire Hospital for you if you haven't been given any information. The leaflet says to be guided by how severely you react and to stop using it if your reaction is severe and you are unable to tolerate it. However, it's important to use the cream as your hospital prescribed it.

If you have had a severe reaction to the cream then I'd recommend getting in touch with your team as soon as possible so that they can advise you what to do.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Kuma
Posted by

Hi fifi65,

It is very frustrated that VIN comes back after many of surgeries. I have had VIN2-3 for a few years, and had laser and excisions 5 times so far and still coming back..

I am on Aldara cream also about for 5 weeks now. I am sorry that you have some reactions. I would talk to doctor if symptom persists and intense. I was told by doctor if I have sever reaction, let him know and may need to stop using it. He says some people have severe reactions and some do not. I am the one who does not have any reactions and actually feel nothing. I feel a little itchy or irritation, but just a little. I think I need to keep using it for a couple of months though.

I hope you feel better soon

Kuma

elmslav
Posted by

fifi65, welcome to the group! Sorry for all you are going through and by the sounds of it you are used to the roller coaster ride. I tried Aldara several years ago and yes, it sure can have a reaction for some. My instructions were 8 hours on then take a shower. During the day it was too painful because of work and the movements of getting up and down and walking down hallway, etc. So I changed from during the day to at night and that helped. I also had a prescription of lidocaine to apply for extreme pain and it was enough to numb the area for a little while.

Take care of yourself,

Lisa

Lisa from USA Michigan

fifi65
Posted by

Hi thank you for your reply, I am going to get back on to my gynaecologist tomorrow and discuss the problems I am having with this cream...

fifi65
Posted by

Thank you for replying to my post Kuma, I definitely think I am one of  the people it doesn’t agree with, I was hoping so much for it to be ok, as now it looks like I will be having a bigger op, plus skin grafts and plastic surgery, I will contact my gynaecologist tomorrow. I hope all goes well for you and you get some long term relief from this horrible condition.. Fifi

fifi65
Posted by

Hi Lisa, thank you for replying, yes I’ve applied this cream at night as I was thinking along the same line as you, let it work while I sleep so to speak, I am going to get checked over and see if I can maybe apply less often and for less time.. Was using the cream successful for you? I hope so. Thanks again all the best Fifi x

elmslav
Posted by

Fifi, I hope it gets better for you then; and maybe your doctor will let you back off. If I remember correctly I started very slowly and tapered up...like twice a week, then three times a week then every other day and so on. Unfortunately it did not work for me :( but you will see on here it has helped many women. 

Keep us posted and take care,

Lisa

Lisa from USA Michigan

Sparkle.1
Posted by

Hi fifi 65

I was given Imiquimoid (Aldra) here in the UK,  I only tried 3 Sachets it was just unbearable pain & was making the area bleed so i stopped using it.   When i saw my Gynae Dr she totally understood that this Cream was Unsuitable for Myself.   If you feel its not for you get intouch with your Gynae Dr.    

Call them tell them Fifi

Sparkle.1.  Paula

With Love 
fifi65
Posted by

Hi Paula, thanks for replying to me, I stopped for a wk, then started again because I saw a slight improvement in my skin, so I’m only doing twice a wk instead of 3 and literally getting it washed off after 6 hrs not 8hrs. Still very uncomfortable but nothing like before, back seeing doc next mth so hopefully she can see an improvement also, thanks again and I hope you’re keeping well xx

Sparkle.1
Posted by

Fifi65

If your tolerating  the pain & your happy to continue then go for it.  Ive had my 2nd Op this Year 1st one on  16/1/19 then again on 3/7/19  for VIN3 but again after 2 Weeks the Cells have returned just as they were.  Being seen on the gynae unit as I have a really Bad Infection been on antibiotics for 3 weeks now,  at least they have seen just how aggressive this is,  hopefully they can do something because wide local incisions & Diathermy is not Working  for me.  Waiting results of 2 area’s of Biopsy to see where i am now.  My Gynae Dr has been on holiday so hopefully she will be writing to me soon when she has the results.  Ive been given some Numbing Gel must say it is a god send  ️  It really helps to control that itching & burning down there.    Hope you get seen to quickly  & this site is amazing & the other members have been so Supportive and so knowledgeable. 

Take Care,   Paula

With Love 
fifi65
Posted by

Hi Paula could I have the name of that numbing cream please? It’s so disheartening when you’ve been through so many surgeries, bi ops horrible infections And it’s back or still there!!! I remember my 1st Op many years ago, I thought be brave, think positive get rid and that will be it. Little did I know : ( Sending a hug and best wishes to you, hope they get you sorted hun x Very frustrating all round this Condition!!! 

Sparkle.1
Posted by

 Fifi65

The Gynae Ward gave it me,  saw a different consultant who could see the Pain I was in.   Here’s a photo of one of the packets with contents inside.   You only need the a little & it has Helped me So Much especially. 

Sparkle.1   Paula 

With Love