Stage 4B vaginal Adenocarinoma

KStuder

I am 45 years old and January 5th 2013 I was diagnosed with vaginal adenocarinoma stage 4b and was told this is extremely rare for me to have this at my age and know chance of cure.  It is very very difficult to treat.  After several treatments and surgeries my local doctors told me they had done all they could do and I was referred to the Cleveland Clinic Ohio for a second opinion.  I recently had a scan and my new treatment that was targeted for the lung mets is working.  It's a Miricle....   If there is anyone out there with a similar situation I would be more than happy to share my treatment plan.  I would love to pass this along if it could help anyone in anyway.  God bless...

NoTimeForCancer

So happy for your news!

I heard terrible news about a former colleague today and needed to hear this.  It goes to show never give up!!  Congrats!!! 

ccfighter

I'm so glad to hear that your

I'm so glad to hear that your treatment is working.  Hang tough.  There is always hope.  We would love to hear about your treatment plan and experiences.  there is always someone out there that can benefit from your story.  Hugs.

Maggie_Ann1

I had never found anyone else who had this before!

First of all, KStuder, I want to send you a hug, and to let you know that my thoughts and prayers are with you.  I received the same diagnosis when I was 47, although not metastatic, and was also told how rare it is for someone my age to get it.  That was 11 yrs. ago, and although there was no effective chemo for it back then, there may be by now.  I had surgery and then rads, and while both were challenging to get through, even just knowing that I was trying made it worth the battle.  Best wishes, and  CONGRATULATIONS on your new treatments working.  YOU GO, GIRL!!!

KStuder

Maggie_Ann1 said:

I had never found anyone else who had this before!

First of all, KStuder, I want to send you a hug, and to let you know that my thoughts and prayers are with you.  I received the same diagnosis when I was 47, although not metastatic, and was also told how rare it is for someone my age to get it.  That was 11 yrs. ago, and although there was no effective chemo for it back then, there may be by now.  I had surgery and then rads, and while both were challenging to get through, even just knowing that I was trying made it worth the battle.  Best wishes, and  CONGRATULATIONS on your new treatments working.  YOU GO, GIRL!!!

Stage 4b vaginal adenocarinoma

Thank you Maggie_Ann1 for your message.  I am still learning this page it is very new to me.  I still continue my treatment of Gemcitabine infusion and chemo oral pills of sutent.  I started this treatment the end of August.  I hit a little bump in the road and treatments were stopped for four weeks as my counts went low.  I was able to start back up today.  In my journey my first treatment didn't work at all.  The second treatment the cisplatin and radiation reduced the pelvic mass and on a pet scan showed no active cells at that point it gave the doctor time to focus on a new treatment the one I am on now for the lung mets.  It has shown progress and my last two scan they were shrinking.  It was litterly a MIRICLE...  As a survivor of this I'm sure you understand how difficult it is to treat as I believe until now there is no known chemo that has worked or been effective and in advanced stages there is less than a 13 % chance of survival of 3 to 5 years.  When my journey started I was so overwhelmed and at some point I found this page with it being new to me I had lost my password and username and had to create a new account.  The first account I had I found a woman in San Francisco not much older than me.  The last time she had left a message on the first account she was not doing well. It would be such a blessing to me if somehow I could find her and share this information with her.  We had had the same line of treatment except this The I'm on now. I truely believe if I could get this information to her it could possibly save her life.  I can't remember her on line name but if I remember her picture was hello kitty. This treatment is considered a form of experimental and I'm receiving it from Cleveland Clinic in Ohio.  I pray this information will help someone out there.  God bless all of you fighters.  Keep your faith and keep fighting

Maggie_Ann1

KStuder said:

Stage 4b vaginal adenocarinoma

Thank you Maggie_Ann1 for your message.  I am still learning this page it is very new to me.  I still continue my treatment of Gemcitabine infusion and chemo oral pills of sutent.  I started this treatment the end of August.  I hit a little bump in the road and treatments were stopped for four weeks as my counts went low.  I was able to start back up today.  In my journey my first treatment didn't work at all.  The second treatment the cisplatin and radiation reduced the pelvic mass and on a pet scan showed no active cells at that point it gave the doctor time to focus on a new treatment the one I am on now for the lung mets.  It has shown progress and my last two scan they were shrinking.  It was litterly a MIRICLE...  As a survivor of this I'm sure you understand how difficult it is to treat as I believe until now there is no known chemo that has worked or been effective and in advanced stages there is less than a 13 % chance of survival of 3 to 5 years.  When my journey started I was so overwhelmed and at some point I found this page with it being new to me I had lost my password and username and had to create a new account.  The first account I had I found a woman in San Francisco not much older than me.  The last time she had left a message on the first account she was not doing well. It would be such a blessing to me if somehow I could find her and share this information with her.  We had had the same line of treatment except this The I'm on now. I truely believe if I could get this information to her it could possibly save her life.  I can't remember her on line name but if I remember her picture was hello kitty. This treatment is considered a form of experimental and I'm receiving it from Cleveland Clinic in Ohio.  I pray this information will help someone out there.  God bless all of you fighters.  Keep your faith and keep fighting

I am so glad that your

I am so glad that your treatment is having positive results for you, KStuder.  And YES, I hope you are able to find the woman you are looking for.  Even if she can't get to Ohio for treatments, they could tele-conference with her oncology team in San Francisco, and get the ball rolling for her there.  I am thankful that they are finding some chemo that can be used for this cancer.  It was so disheartening, back when I was diagnosed, to find out there wasn't any.  I don't check the site daily, but I do try to check it as often as I can.  In the meantime, I am sending big hugs your way, and to all of the lovely women who are fighting this.  Stay strong, ladies.  There truly is strength in numbers!

 

KStuder

Maggie_Ann1 said:

I am so glad that your

I am so glad that your treatment is having positive results for you, KStuder.  And YES, I hope you are able to find the woman you are looking for.  Even if she can't get to Ohio for treatments, they could tele-conference with her oncology team in San Francisco, and get the ball rolling for her there.  I am thankful that they are finding some chemo that can be used for this cancer.  It was so disheartening, back when I was diagnosed, to find out there wasn't any.  I don't check the site daily, but I do try to check it as often as I can.  In the meantime, I am sending big hugs your way, and to all of the lovely women who are fighting this.  Stay strong, ladies.  There truly is strength in numbers!

 

Thank you Maggie_Ann1 for

Thank you Maggie_Ann1 for your kind words.   It is very disturbing to hear those words that there is no chemo to treat this type of cancer.   That was very hard for me to accept in this day and age.  The treatment that I am getting now is considered expiermental.   But I have show signs of improvement with the lung mets.  I just had a repeated scan and will get the results on Thursday.  I'm praying for more good news.   Wow you are so very lucky the found yours when they did.  I was told it's almost impossible to detect till it's late stages.  I did find the woman I was looking for after going threw old posts.  I left her a message and pray everyday she is still hanging in there and will get my information.  Thank you again for your words of encouragement .   Hugs Kim 

Maggie_Ann1

KStuder said:

Thank you Maggie_Ann1 for

Thank you Maggie_Ann1 for your kind words.   It is very disturbing to hear those words that there is no chemo to treat this type of cancer.   That was very hard for me to accept in this day and age.  The treatment that I am getting now is considered expiermental.   But I have show signs of improvement with the lung mets.  I just had a repeated scan and will get the results on Thursday.  I'm praying for more good news.   Wow you are so very lucky the found yours when they did.  I was told it's almost impossible to detect till it's late stages.  I did find the woman I was looking for after going threw old posts.  I left her a message and pray everyday she is still hanging in there and will get my information.  Thank you again for your words of encouragement .   Hugs Kim 

Kim, you are an inspiration,

Kim, you are an inspiration, because although your treatment may be considered experimental now, just think of all of the women ahead that you may be able to help, by participating in the program!  I am so glad you are showing signs of improvement with your lung mets.  I will be praying for more good news for you, too.  Keep me posted!  Hugs, Maggie.

Maggie_Ann1

Maggie_Ann1 said:

Kim, you are an inspiration,

Kim, you are an inspiration, because although your treatment may be considered experimental now, just think of all of the women ahead that you may be able to help, by participating in the program!  I am so glad you are showing signs of improvement with your lung mets.  I will be praying for more good news for you, too.  Keep me posted!  Hugs, Maggie.

Hi Kim...

Ignore this please....it wouldn't let me delete, but I will P.M. you.

Kelley_strong

Mother just diagnosed with Stage 4 Vaginal Cancer

While I know this is an old thread, I hope perhaps someone could shed some light.  I'm seaking support or guidance for my mother who also has had her vaginal cancer spread to her lungs.  She just underwent treatment at the end of 2019-early 2020 and received a clean bill, but less than 6 months later, it has returned only to her lungs this time.  Therefore, it is classified as Stage 4. We're kind of freaking out but I want to be strong and help get as much information as possible.  I have heard that Stage 4 isn't necessarily a death sentance, but just a deciding factor on what will be the "end cause" at the end of the day.  She has no symptoms yet and will begin agressive chemo soon.  We go to Hopkins next week to see if there are any trials, etc. and learn more.  Any insight on others with Stage 4 and how they live life as their new normal would help.  

Thank you. 

Kelley_strong

Kelley_strong

KStuder said:

Stage 4b vaginal adenocarinoma

Thank you Maggie_Ann1 for your message.  I am still learning this page it is very new to me.  I still continue my treatment of Gemcitabine infusion and chemo oral pills of sutent.  I started this treatment the end of August.  I hit a little bump in the road and treatments were stopped for four weeks as my counts went low.  I was able to start back up today.  In my journey my first treatment didn't work at all.  The second treatment the cisplatin and radiation reduced the pelvic mass and on a pet scan showed no active cells at that point it gave the doctor time to focus on a new treatment the one I am on now for the lung mets.  It has shown progress and my last two scan they were shrinking.  It was litterly a MIRICLE...  As a survivor of this I'm sure you understand how difficult it is to treat as I believe until now there is no known chemo that has worked or been effective and in advanced stages there is less than a 13 % chance of survival of 3 to 5 years.  When my journey started I was so overwhelmed and at some point I found this page with it being new to me I had lost my password and username and had to create a new account.  The first account I had I found a woman in San Francisco not much older than me.  The last time she had left a message on the first account she was not doing well. It would be such a blessing to me if somehow I could find her and share this information with her.  We had had the same line of treatment except this The I'm on now. I truely believe if I could get this information to her it could possibly save her life.  I can't remember her on line name but if I remember her picture was hello kitty. This treatment is considered a form of experimental and I'm receiving it from Cleveland Clinic in Ohio.  I pray this information will help someone out there.  God bless all of you fighters.  Keep your faith and keep fighting

Mother is Stage 4 - Vaginal Cancer

Hello @KStruder - I wanted to reach out and see how you were doing?  My mother had her vaginal cancer return and this time has spread to her lungs.  She was just diagnosed last fall (2019) and had finished treatment in Feb 2020. However, after a good PET scan in May it has now been discovered that she has spots on her lungs that are the vaginal cancer (biopsy confirmed). The doctors have told us it is Stage 4 and I'm just trying to find other Stage 4 individuals who have been able to continue to live with the diagnosis. Given it is such a rare cancer, I am still navigating while we are processing this. Any insight would be very much appreciated.