Vaginal cancer

BrokenJ
BrokenJ Member Posts: 17
in Gynecological Cancers (other than ovarian and uterine) #1
Looking for information on the impending pelvic radiation and chemo that begins next week. And someone to commiserate with since no one seems to have had this cancer.

Comments

  • beckyracn
    beckyracn Member Posts: 322
    #2
    My cancer was cervical and I
    My cancer was cervical and I did receive chemo and rads (internal and external). Ask away....so sorry to hear of your dx. This is an ugly dragon to dance with, but can be beat!
  • BrokenJ
    BrokenJ Member Posts: 17
    #3
    beckyracn said:

    My cancer was cervical and I
    My cancer was cervical and I did receive chemo and rads (internal and external). Ask away....so sorry to hear of your dx. This is an ugly dragon to dance with, but can be beat!

    vaginal cancer
    Hi Beckyracn,
    Thanks for letting me pick your brain. Soooo, I'll be receiving radiation 5 times a week and chemo once a week for 5 weeks and then they will reassess at that time to see if I need the bracytherapy. I'm just wondering when I can expect to start experiencing the diarhea, nausea and constant urge to pee. I know everyone is different. I'm just hoping to gauge my response by others as I'm in school now and want to see how far I think I can push it this semester.
  • beckyracn
    beckyracn Member Posts: 322
    #4
    BrokenJ said:

    vaginal cancer
    Hi Beckyracn,
    Thanks for letting me pick your brain. Soooo, I'll be receiving radiation 5 times a week and chemo once a week for 5 weeks and then they will reassess at that time to see if I need the bracytherapy. I'm just wondering when I can expect to start experiencing the diarhea, nausea and constant urge to pee. I know everyone is different. I'm just hoping to gauge my response by others as I'm in school now and want to see how far I think I can push it this semester.

    The radiation will feel like
    The radiation will feel like nothing is going on...until you get towards the end of the second week. At this time you will probably start experiencing indigestion...they have a pill for that. With time, it will cause inflammation of your intestinal tract and you may start experiencing diarrhea or constipation. About the end of the third week is when the exhaustion started kicking in.
    Chemo is the kicker for nausea...depends on what type of chemo. I received 10 doses of Cisplatin and it took almost a month before we figured out a regimn that helped at all...I lost 20 lbs. quickly. After that things evened out. The chemo can also cause diarrhea or constipation. It can also change your sense of taste. I survived on cottage cheese and peaches :)The chemo damaged my inner ears, so I experienced a lot of vertigo with added nausea :(
    Many women I've spoken to breezed through the treatments withouot too many side effects. Exhaustion being the one that almost everyone experienced. My docs hit me hard due to the extent of the cancer. Actually, I haven't spoken to anyone that received the extensive treatment I did...maybe that's why I've remained in remission so long (almost 3.5 years!)
    We all experience things differently. Maybe you will be one of the lucky ones!
    If you end up having internal treatments...it can be a little invasive at first, but you adapt quickly.
    Hang in there girl...go out there and fight like a woman!!!
  • BrokenJ
    BrokenJ Member Posts: 17
    #5
    beckyracn said:

    The radiation will feel like
    The radiation will feel like nothing is going on...until you get towards the end of the second week. At this time you will probably start experiencing indigestion...they have a pill for that. With time, it will cause inflammation of your intestinal tract and you may start experiencing diarrhea or constipation. About the end of the third week is when the exhaustion started kicking in.
    Chemo is the kicker for nausea...depends on what type of chemo. I received 10 doses of Cisplatin and it took almost a month before we figured out a regimn that helped at all...I lost 20 lbs. quickly. After that things evened out. The chemo can also cause diarrhea or constipation. It can also change your sense of taste. I survived on cottage cheese and peaches :)The chemo damaged my inner ears, so I experienced a lot of vertigo with added nausea :(
    Many women I've spoken to breezed through the treatments withouot too many side effects. Exhaustion being the one that almost everyone experienced. My docs hit me hard due to the extent of the cancer. Actually, I haven't spoken to anyone that received the extensive treatment I did...maybe that's why I've remained in remission so long (almost 3.5 years!)
    We all experience things differently. Maybe you will be one of the lucky ones!
    If you end up having internal treatments...it can be a little invasive at first, but you adapt quickly.
    Hang in there girl...go out there and fight like a woman!!!

    :-)
    Girl I'm gonna give it hell. We are going to fry this little ba$tard!!! I don't have time for this. I'm ready to knock it out! Thanks for the info!
  • mamadawg
    mamadawg Member Posts: 17
    #6
    Hoping you got my message on
    Hoping you got my message on other post, but in case you don't wanted to send you one here so you can feel free to send me messages or any questions you may have. Think I had every treatment including surgeries in the book for this type of cancer from nephrostomy tubes in both kidneys to total pelvic exteneration with vaginal reconstruction when chemo and radiation did not work in completely removing it. My thoughts and prayers are with you that chemo and Rad will be all that is necessary for you. Biggest advice I can give is keep your positive attitude. Know that this can be beaten. Mine was so bad I was given 6 months when it was first diagnosed and that was 17 months ago now. Best of luck as you begin your journey.
  • BrokenJ
    BrokenJ Member Posts: 17
    #7
    mamadawg said:

    Hoping you got my message on
    Hoping you got my message on other post, but in case you don't wanted to send you one here so you can feel free to send me messages or any questions you may have. Think I had every treatment including surgeries in the book for this type of cancer from nephrostomy tubes in both kidneys to total pelvic exteneration with vaginal reconstruction when chemo and radiation did not work in completely removing it. My thoughts and prayers are with you that chemo and Rad will be all that is necessary for you. Biggest advice I can give is keep your positive attitude. Know that this can be beaten. Mine was so bad I was given 6 months when it was first diagnosed and that was 17 months ago now. Best of luck as you begin your journey.

    Hi Mamadawg
    So sorry to hear of your struggle with this demon! Had my first radiation today and I'm nauseous. Don't know if its the radiation or just a coincidence or nerves. Guess time will tell. I get my first chemo tomorrow. Yipee! I just want to fry this thing!
  • mamadawg
    mamadawg Member Posts: 17
    #8
    BrokenJ said:

    Hi Mamadawg
    So sorry to hear of your struggle with this demon! Had my first radiation today and I'm nauseous. Don't know if its the radiation or just a coincidence or nerves. Guess time will tell. I get my first chemo tomorrow. Yipee! I just want to fry this thing!

    Think it may b a little of
    Think it may b a little of both. Best of luck with chemo tomorrow. Sounds like you are having the same combo treatment of chrmo/radiation at same time. I talked to many during my timed who said they did one then the other, but not both at Sam time. So you may experience more nausea as it progresses, but your doc can prescrib something for that to help. Do you have radiation tomorrow as well. I would some weeks have chemo then go to radiation or vice versa. If so, I would highly recommend getting the nausea meds. My did said I could take it before hand to help prevent onset of it.
  • BrokenJ
    BrokenJ Member Posts: 17
    #9
    mamadawg said:

    Think it may b a little of
    Think it may b a little of both. Best of luck with chemo tomorrow. Sounds like you are having the same combo treatment of chrmo/radiation at same time. I talked to many during my timed who said they did one then the other, but not both at Sam time. So you may experience more nausea as it progresses, but your doc can prescrib something for that to help. Do you have radiation tomorrow as well. I would some weeks have chemo then go to radiation or vice versa. If so, I would highly recommend getting the nausea meds. My did said I could take it before hand to help prevent onset of it.

    Hey Mamadawg
    I have radiation monday thru friday and then Chemo on Tues. Woo hoo are we having fun now or what??? Got a nasty headache after the chemo and the nausea is already setting in, but they loaded me up with meds and my honey got me a cupcake tonight and that fixes everything! Trying to keep hydrated with my Gatorade. Was having some sharp pains this morning. Don't know if its vaginal or bladder related. Could just be inflammed tissue from my surgery that the radiation is irritating. Did you get the headaches too?
  • ppaseka
    ppaseka Member Posts: 70
    #10
    vulvar cancer
    My wife is on #25 for radiation and just finished 6 chemo treatments of cisplaton. Burns are getting bad. Her girl parts are the worst. Don't hesitate to mention any and all symptoms to your doc. They have given her silvedene cream for the skin burn, proctofoam for the rental burn and itch, steroid cream for the internal vaginal area, and a med to stop the burn from urination. Make sure they give you vaginal dilator to help with the vaginal stenoses that will result from the pelvic radiation. Hang tough and speak up.
  • BrokenJ
    BrokenJ Member Posts: 17
    #11
    ppaseka said:

    vulvar cancer
    My wife is on #25 for radiation and just finished 6 chemo treatments of cisplaton. Burns are getting bad. Her girl parts are the worst. Don't hesitate to mention any and all symptoms to your doc. They have given her silvedene cream for the skin burn, proctofoam for the rental burn and itch, steroid cream for the internal vaginal area, and a med to stop the burn from urination. Make sure they give you vaginal dilator to help with the vaginal stenoses that will result from the pelvic radiation. Hang tough and speak up.

    Awww thanks dude!
    I haven't gotten to the burns yet, just the nausea and diarrhea. Good luck to your honey. She must be about done then, right?

    Hey, while I have you...I'm kinda confused about when I should take Zofran and when I should take prochlorperazine. I think I'm supposed to take the Zofran to prevent nausea starting 4 days after chemo and take the prochlorperazine when I'm actually nauseaous.
  • sunflash
    sunflash Member Posts: 197 Member
    #12
    BrokenJ said:

    Awww thanks dude!
    I haven't gotten to the burns yet, just the nausea and diarrhea. Good luck to your honey. She must be about done then, right?

    Hey, while I have you...I'm kinda confused about when I should take Zofran and when I should take prochlorperazine. I think I'm supposed to take the Zofran to prevent nausea starting 4 days after chemo and take the prochlorperazine when I'm actually nauseaous.

    I had it too
    Hi BrokenJ,
    Sorry to hear you're going through this, but wanted to let you know I, too, was diagnosed with vaginal cancer in 2007. It was totally unsuspected.....I had never even had an abnormal pap.
    But it will be 5 years in March, and there is no sign of it ever coming back!

    Unfortunately, I was diagnosed with uterine cancer in June, but it was unrelated to the vaginal cancer. I just finished with chemo in November, so praying that I never see another cancer cell again the rest of my life!

    What stage was your cancer, and how was it diagnosed? Mine was stage 2, and I went to the doctor after having a small amount of bleeding. This is a rare cancer......my doctor told me she rarely sees this as a primary cancer.
  • ppaseka
    ppaseka Member Posts: 70
    #13
    BrokenJ said:

    Awww thanks dude!
    I haven't gotten to the burns yet, just the nausea and diarrhea. Good luck to your honey. She must be about done then, right?

    Hey, while I have you...I'm kinda confused about when I should take Zofran and when I should take prochlorperazine. I think I'm supposed to take the Zofran to prevent nausea starting 4 days after chemo and take the prochlorperazine when I'm actually nauseaous.

    Bartholins gland
    Yes my wife finished on Feb. 6th. We started chemo again on Feb. 24. We are on cisplatin once every three weeks and Xeloda. She take 1500 mg twice a day for two weeks one week off during the cisplatin. We will have a total of three treatments of cisplatin. She has tolerated everything well. She is so strong. We resumed intimacy 5 weeks after surgery and continued until week five of radiation. We resumed again last week. As far as the Zofran or compazine, she only took it for twos days after the first chemo and didn't take it anymore and never got sick. She is taking Zofran for the first three days of these treatments. Fingers crossed she has had no issues yet. She is one strong women. We have an 11 yr old daughter and 14 yr old son that keeps her strong.
  • ppaseka
    ppaseka Member Posts: 70
    #14
    BrokenJ said:

    Awww thanks dude!
    I haven't gotten to the burns yet, just the nausea and diarrhea. Good luck to your honey. She must be about done then, right?

    Hey, while I have you...I'm kinda confused about when I should take Zofran and when I should take prochlorperazine. I think I'm supposed to take the Zofran to prevent nausea starting 4 days after chemo and take the prochlorperazine when I'm actually nauseaous.

    contact info
    Feel free to contact us 574-551-2115 or ppaseka@embarqmail.com if you ever need anything.
  • Bittersweetly
    Bittersweetly Member Posts: 14
    #15
    Yes, i have vaginal cancer
    Hi BrokenJ,
    I also have been looking for someone else who has vaginal cancer!
    I was diagnosed with Stage IVb vaginal adenocarcinoma in early December - 4 months ago. I finished treatment on February 28. My understanding is that adeno is much more rare than squamous (though as you know, any kind of vaginal cancer is rare!)
    As you can see from the respones and which I discovered recently - anyone who has had pelvic radiation and cisplatin is going to have very, very similar if not identical treatment, and side effects, to ours.
    I created this blog about dealing with side effects, I hope you find it helpful:
    http://radiationsideeffectsvaginalcancer.blogspot.com/
    Remember that different people have really different responses to things. I'm not even sure the things that worked for me would work for others, but it's worth a try!
    BTW I've had a CT scan and a pelvic exam, and my tumor has completely disappeared. I have a PET scan in 6 weeks which will look at the 'mets'. Unfortunately I'm going to be mostly offline 'til around May 1. I really hope we can connect after that!
    Good luck & best wishes for your journey ahead...

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