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dr visit regarding 5FU intravaginal dr visit regarding 5FU intravaginal

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Unread 09-27-2002, 02:20 PM
dr visit regarding 5FU intravaginal

Thought I would give everyone an update and explain what I found out about the 5FU intravaginal chemo. First may I say, YUCK!
Treatment is to last 10 weeks if I can make it that long. I have to administer it to myself at bedtime once every 7 days (if the pain is gone from the last treatment) with a ortho applicator. Stay in bed till morning and take a bath first thing. Apply Vaseline to the outer areas to lessen burning out side of the vagina. I am to expect intense burning and itching inside and out, as this will be burning of the lining of the vagina. And wear pads, as the whole mess of dead tissue will be coming out. Call every week with a report of how it is going, but don't come back till Feb for retesting.
That was the consult part. Then he takes a look for himself (first time I have seen him). Says it was worse than he had heard from my other doctor, and thanks to the camera on his coloscope (?), he showed me. He did the vinegar thing and it looked to me like the vagina was pretty much covered. He said that wasn't what worried him the most, it was all of the lesions which were blood filled. He said on a scale of 1-10, this was an 8.
Isn't it funny that I had 2 clean paps after my Dec hyster? Also, my biopsy from 3 weeks ago still hadn't healed. But he "thinks" it is still contained. So we still do the intravaginal chemo.
It has an 80% chance of getting it. If it doesn't we will go to radiation. I asked him about lasar and he said it wasn't an option.
He is supposed to be the best, even if he lacks bedside manner, so I guess I need to trust him.
I'm not starting the treatments till Tues. He said no sex for 3 days after the iodine and I feel that hubby and I need one more time before a very long dry spell (blushing here). Lets just say, Christmas will take on a whole new meaning.
Any thoughts about this would be appreciated, the treatment, not the Christmas thing.
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Unread 09-27-2002, 04:18 PM
Not Pleasant--But Go For It!

80% chance--that's pretty darn good and would avoid radiation. Sounds messy--actually it sounds like one of those things that are awful until you get into it and get used to it and then find it more of a nuisance than anything. Hope you're one of the 80%--I'm adding a er that you are.
Unread 09-27-2002, 06:01 PM
dr visit regarding 5FU intravaginal

s Pam

Thanks for coming back to tell us more about this treatment.
And I think your December plan is a great thing to look forward to. We all need goals to carry us through!!
Wow!!! This does not sound easy. But it sure sounds treatable and that's what 's important. Never having heard of this before, I am surprised he doesn't see you again until February.
My doc wants me to insert Replens two or three times a week. And I've put off doing this for a month. Just sounds messy. And then I read what you are having to do, and I think the replens mess won't bother me anymore.
Thanks for the inspiration.
Let us know how you are making out with it.

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Unread 09-28-2002, 01:32 AM
dr visit regarding 5FU intravaginal

Hi Pam, I didnt have the chemo that you are facing but I did have radiation, both external and internal and I was severely burnt from that. I had alot of discharge from these treatments but somehow you just get through . I was lucky as I had some other girls here going through the same treatments as I was at the same time.

Yes it is scary and horrible to be facing it but I am now over 12 mths post radiation and I have no lasting side effects except having to use the dreaded vaginal dilator . (not sure if you will need to use this , but it is a good idea to ask the onc~ if there is scar tissue after treatments . )

My oncologist is one of the best here but he has no bedside manner either but I try to look past that and know that I am in good hands.

Holding your hand and your heart as you face this scary time
Unread 09-28-2002, 10:58 AM
dr visit regarding 5FU intravaginal


Just wanted to add some 's for you. I've read a bit about 5FU. While it sounds most unpleasant, if it does the job, it's worth it. Most of what I have read says that women do frequently stop the treatments due to discomfort (it's kind of hard to do something to yourself that causes pain--it's easier if someone else does it). I'm sorry to hear that it is so widespread. Those pesky cells! Laser is generally used only when it's fairly well localized, I understand.

Pam--we are going to be here for you every step of the way. If the going gets tough, just come find us and we'll do our best to help you get through.

Have you talked to your doctor about nutrition and vitamins and such? I know I am trying to keep mine at bay by keeping my immune system working at its maximum. I have several supplements that I take and I try my best to keep up with my exercise and yoga. And you're going to need to be in the best of health to get through this chemo and then finish healing.

Please keep posting, Pam, and let us know how you are getting along. I will be keeping you in my thoughts and 'ers.
Unread 10-01-2002, 07:17 PM
5 fu treatment

Hi Pam!
My name is Sandie. i have just started 5fu treatment this past Saturday.. I had a tah 2 years 5 mos ago.
I called my gyn to ask for a prescription for a yeast infection and told the nurse that it was burning and painfulnot too itchy.
She told me she wasnted me in the office the next am to be examined as she was reviewing my records as we spoke. (prior complications with post op infection). As I went into the office the next am i asked her if the dr would do my pap as i was scheduled for that week if it would interfer with having the yeast infection. well, thank god and for her that she sid the dr would have the time to do both.. I think about her daily. well my pap came back abnormal after having 2 normal paps in the last year whe they called to tell me they scheduled me for a colopscopy with the dr. colopsocopy was finished and the dr told me he wanted to see a specialist a friend of his nearly 2 hours away from here. He was a gynecology oncologist (just the name frightened me), the office set up the appointment and off my husband an i went. He performed a colopscopy, 2 or 3 biopsies and said it did not look like cancer....returned 4 weeks later for consultation and found out the i have precancerous cells and have to have 5fu 10 treatments...i just started on saturday..and it hurts..burns..and i am so tired...and had a headache.. well this was the first i can't wait to see what happens for the next 9...well enough about me i do understand what you are going thru and yea no bedside manner in these doctors but they are good......keep us informed and i will be thinking and praying for both of us and the many more out there................sjb
Unread 10-02-2002, 01:48 PM
dr visit regarding 5FU intravaginal

Finally! I was beginning to think my doctor was the only one doing this, which didn't make me feel too good about it.
I had to wait to start as I thought I was developing an infection. Just itching with may be related to the discharge which has been getting worse for the last few weeks. I just didn't want to start this if I was already irriated. Come to think of it, I don't want to start this period. Also, the drug store had to order the 5FU and was really confused about the ortho applicator. I just hope they gave me the right thing. It wasn't what I was expecting and I have yet to figure out how to get the stuff in there. No instructions.
So, be specific about the burning. Is it constant, how long did it last? Did you have any problems with it burning the outer areas? Does it hurt to bend or sit?
The really worst part of this has been the lack of info and the fact that I have to do it to myself. And at night when I can't get the doctor on the phone if I have questions or a bad reaction. I just know a man had to think this up. I just want to start this and get it over with.
To make things worse, he wants me to stop smoking this week too. Lets see.....no cigarettes, no sex and to top it off, lets see how much pain we can put you in.
I'll be praying for both of us too.
I want to thank all of you for the support, it has made this mess easier to deal with knowing you all are here.
I saw my GYN yesterday, I think he is as shocked by all of this as I am. He said it just wasn't supposed to be where it is, he was keeping an eye on the cuff, not the lower area.
Thanks again Ladies

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