One patient with glioblastoma still alive nine years later
by wendylou on Sat Apr 18, 2009 12:00 AM
I was reading through all these posts to find similarities. However I am amazed at the people in the subject colum crying out for help and the replies are not as fast if any at all. But then we sometimes do private replies too... But for those that have cried out and those that have replied and have been here in our situation....I know how scary it is. I promise to followup on the progress of my VAIN III and I have Lupus/Sjogrens Syndrome to boot and have been on immune suppressants for 2 years now. I go to an Oncologist 4/30 which gives me 2 weeks of not knowing time. So during this time I want all of you to know that WE WILL ALL BE OKAY! Pray and hold our friendships and in 5 years or so we need to get together because we are survivors and we can beat this.
Even though this is an uncomon thing...and VERY personal...we will all make it through hope, faith and love~! and we will support each other every step of the way. And for those of you that posted earlier requests and threads. PLEASE follow up and let us know your outcome. We need each other whether it be good bad or ugly....we still need each other. I love all of you no matter who you are and we can do this together. Feel free to email me anytime.
Much love and LOTS of Fight left!
by bkk1128 on Thu Apr 30, 2009 12:00 AM
Just wanted to know how things went today. Please inform me regarding today and what your oncologist had to offer. You've been in my thoughts and prayers. Of course, you remember I had surgery on 3/23/09 for VAIN lll. I will have my first post-op pap in July. Anxious to hear from you.
by sofiaroma on Tue May 05, 2009 12:00 AM
I have been posting my daughter story in the vulvar cancer section. Her pre cancer was caused by HPV,I know that most vaginal cancers and cervical cancers are also caused by HPV and for this reason I am making it an effort to post a message under this other conditions that are related to each other by the common cause that is HPV. Please read my post under vulvar cancer,hope is here is the heading of the post.The DIM that my daughter is taking should also work for cancerous conditions. I want to share this with everyone,in hope that our story will help someone else.
Love you all,God bless.
by wendylou on Thu Jun 25, 2009 12:00 AM
Hi there all!
Well....here goes...The Oncologist told me he was going to go in and do laser surgery and zap out that lesion. No worries. So I wake up from surgery and ended up having a partial vaginectomy on the upper part of the vagina. He had to laser ablate the entire cuff and back a little more as it was fully VAIN III. I was under the impression it was going to be a couple days recovery and back to work but it did take a full week for recovery. My follow-up was good and they prescribed me the efudex (5fu) topical cream once every 21 days to keep the dysplasia from the rest of my vagina from turning into cancer. I had my first treatment and it went ok but I have some advice for all those not anticipating this cream like myself. Dr. Offices are very minimal in explaining these things.
1. In order to get every thing ready for the following morning to clean it out (if you are required to do so as I am) it would help to organize as follows
A. Go on a search to every drug store you can find to look for the old fashion red water bottle with all the attachments (used for douching, enema, etc) I bought the plain bottle first then I realized all the attachments were not included so I went and found the correct one at CVS. If they dont have it, ask them to order you one and they will have it in a couple days.
B. Go and buy you some Diaper rash ointment with Zinc Oxide in it. (They told me to use vasoline but after much research I learned the zinc oxide works better from burns) when they say apply a thick layer....do so. From the beginnning of the crack in the front to the end in the back and be generous about it.
C. Invest in a box of disposable gloves from the local drug store. You WILL be using these. The first time I used 3. HA!
D. Do NOT think the small pint douch bags will work fast enough...trust me...when your in a stand up shower with no faucet and you have to douche 4 times...too much time passes and too much water slams into your eyes while your holding it up high at the spout to fill it back up and in the mean time the cream is running down your legs. Or (which I learned after the fact) get a gallon pitcher and fill it full of water and set it nearby for frequent refills and dont forget the hydrogen peroxide (if you are required to do so)
E. Do NOT pee before this showering event. Do NOT get your first cup of coffee, do NOT walk around....go straight to the process. Trust me...you may be a babbling idiot in the shower with one eye open..but you will get it done. Then reward yourself with your coffee or drink of choice.
F. Yes there is an F and dont fail this one.....YOU ARE NO LESS OF A WOMAN. YOU ARE BEAUTIFUL AND AMAZING AND STRONG AND YOU CAN DO THIS AND BE PROUD OF WHO YOU ARE!
Now afterwards....I have learned....do it on the weekend. The next day sitting for longer than 45 minutes is kind of uncomfortable because it has to breathe so I would do house chores that day to keep myself moving. I wore light (one size bigger) cotton underwear and loose lounge pants. When I has to urinate it burned a little if the urine passed by the opening so lean forward a little if possible to keep it away. But it wasnt any more pain that a small uti feeling.
I'm sure theres more....but if you have any questions please feel free to email me
or email me for my phone number and I will try to call you.
by bkk1128 on Fri Jun 26, 2009 12:00 AM
It was so good to hear from you. You have definitely been in my thoughts and prayers. I'm sorry things were so extensive. You sound like you have a great attitude at present. Keep the faith and PLEASE keep in touch. Remember, our Heavenly Father is in control. I have my first post-surgical pap on July 24th.
Bev from NC
by wendylou on Tue Jun 30, 2009 12:00 AM
On 6/26/2009 bkk1128 wrote:Hi Wendy,It was so good to hear from you. You have definitely been in my thoughts and prayers. I'm sorry things were so extensive. You sound like you have a great attitude at present. Keep the faith and PLEASE keep in touch. Remember, our Heavenly Father is in control. I have my first post-surgical pap on July 24th.Bev from NC
I will be thinking of you with all my heart! How are you feeling?
Wendy from GA
by stuffedtiger31 on Fri Apr 30, 2010 01:49 AM
I'm due to get a vaginal biospy because my doctor thinks he felt something and just before that I had a normal pap smear and he felt me again and said it seemed like what he felt before was gone. Should I trust him and go ahead with the biospy or should I get a second opinion?
P.s. I am scared to death of the biopsy procedure and the realize that i might have uterine caner. Help Help please
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