Ovarian Carcinosarcoma

Hi Folks,

My mom was diagnosed with stage 3 c ovarian carcinosarcoma in June.  She is being hospitalized for her second course of chemo tomorrow.  She has several enlarged lymph nodes near her aorta and kidneys that could not be removed during her debulking surgery. So far, her surgeons are telling her that she is tolerating the chemo exceptionally well.  Is there anyone out there that has experience with this advanced form of aggressive ovarian cancer?  Any information is welcome.  I'm in shock - my mother was healthy and active until this disease struck her down.  She lives on the east coast and we live on the west coast.  My dad is doing an exceptional job of caring for her, but I am reeling from the effect this has had on my mom, my dad and all of us.

On 8/20/2007 Christiane wrote:

Hi Folks,

 

My mom was diagnosed with stage 3 c ovarian carcinosarcoma in June.  She is being hospitalized for her second course of chemo tomorrow.  She has several enlarged lymph nodes near her aorta and kidneys that could not be removed during her debulking surgery. So far, her surgeons are telling her that she is tolerating the chemo exceptionally well.  Is there anyone out there that has experience with this advanced form of aggressive ovarian cancer?  Any information is welcome.  I'm in shock - my mother was healthy and active until this disease struck her down.  She lives on the east coast and we live on the west coast.  My dad is doing an exceptional job of caring for her, but I am reeling from the effect this has had on my mom, my dad and all of us.

Christiane ,

 Hi wish we were talking on a little Happier subject. My Wife also has lllc ovarian carcinosarcoma. She was dx in Mar 06, it had also invalid her Colon. At the same time she was Dx with Brest Cancer. (different Cancer).

  She under went 8.5 hr's of surgery to remove a tomar the size of a 20 week Fetus. and remove a \section of her Colon and a  stoma for Bag.( reversed after 6 months) About 4 weeks later she had Lumpectomy on Brest and a Port inserted for her Chiemo.6round every 3 weeks of Cisplatin. This is the only thing she took. Dr said in her Phy condition (85 Lbs after Surgery) if they gave what they normally did that it would Kill her. She is also taking Fermeral for Brest Cancer.

 All her treatments have been over since 16 Sept 06. She is doing fine,  she just had her 3 month check up and all is good . Her CA125 is Below 5.

   I tell you all this to say that no matter what you read(most is not good) never give up Hope. I was reading everything I could find, and was not happy with what I was finding. I had prepared myself to celebrate Or 37th Anv. 19 July 07 alone, But Didn't !!!!! When I told Dr about what I had read he got upset at me,He told me that all I had read was Case Studies, and didn't mean a thing as far as Mary was conserend,that just like Mary every Cancer is Different no  two are Genetically alike.

  Well I stopped Reading and started Living. Mary take every day as it was the First day of the rest of Our Lives.

 Ps as far as how good your Dad is donig for her.We men cando it if we Have to. LOL

On 10/4/2007 Billyejack wrote:

 

On 8/20/2007 Christiane wrote:

Hi Folks,

 

My mom was diagnosed with stage 3 c ovarian carcinosarcoma in June.  She is being hospitalized for her second course of chemo tomorrow.  She has several enlarged lymph nodes near her aorta and kidneys that could not be removed during her debulking surgery. So far, her surgeons are telling her that she is tolerating the chemo exceptionally well.  Is there anyone out there that has experience with this advanced form of aggressive ovarian cancer?  Any information is welcome.  I'm in shock - my mother was healthy and active until this disease struck her down.  She lives on the east coast and we live on the west coast.  My dad is doing an exceptional job of caring for her, but I am reeling from the effect this has had on my mom, my dad and all of us.

Christiane ,

 Hi wish we were talking on a little Happier subject. My Wife also has lllc ovarian carcinosarcoma. She was dx in Mar 06, it had also invalid her Colon. At the same time she was Dx with Brest Cancer. (different Cancer).

  She under went 8.5 hr's of surgery to remove a tomar the size of a 20 week Fetus. and remove a \section of her Colon and a  stoma for Bag.( reversed after 6 months) About 4 weeks later she had Lumpectomy on Brest and a Port inserted for her Chiemo.6round every 3 weeks of Cisplatin. This is the only thing she took. Dr said in her Phy condition (85 Lbs after Surgery) if they gave what they normally did that it would Kill her. She is also taking Fermeral for Brest Cancer.

 All her treatments have been over since 16 Sept 06. She is doing fine,  she just had her 3 month check up and all is good . Her CA125 is Below 5.

   I tell you all this to say that no matter what you read(most is not good) never give up Hope. I was reading everything I could find, and was not happy with what I was finding. I had prepared myself to celebrate Or 37th Anv. 19 July 07 alone, But Didn't !!!!! When I told Dr about what I had read he got upset at me,He told me that all I had read was Case Studies, and didn't mean a thing as far as Mary was conserend,that just like Mary every Cancer is Different no  two are Genetically alike.

  Well I stopped Reading and started Living. Mary take every day as it was the First day of the rest of Our Lives.

 PS as far as how good your Dad is donig for her.We men can do it if we Have to. LOL

 

 Oh I forgot to intrduce myself . My name is Billye Jackson and we live in  northen Middle Tennessee

 

 

Hi!

Thank you so much for your touching message.  I have good news to report as well.  My mom just finished her 4th chemo treatment of ifosfomide and cysplatin and she is doing very well.  Her CA 125 level was down to 8 last week and she is tolerating the chemo very well according to her surgeons; only one other patient in the cancer ward is able to tolerate the levels of ifosfomide my mother is getting.  My parents 41st wedding anniversary was the day after my mother's 6 hour surgery back in June and it just about broke my heart.  I can not tell you how happy I am that your wife is doing well.  Even if my mother weren't on her way to remission, my heart fills with joy to hear such good news.  I don't know if you have found the yahoo list on uterine and ovarian carcinosarcoma, but there are a few individuals out there collecting medical research data and sharing it with the rest of us.  A new chemo drug for sarcoma has been approved in Europe and apparently is on trial here in the US.  It has a better efficacy rate than ifosfomide in the trials, so I figure the longer the remission, the better a chance there is another drug in the arsenal to fight this !@#$% disease.

 My father is a halfway decent cook by now which is a miracle in and of itself :)

All the best to you and your wife.

Christiane in OR 

  Mary turn 61 this year for a while there we didn't think she would see 60. She to this day doesn't know how close she was. Mary is the type who doesnt want to know. It's good thing to because if she had known all that I had Learn about  what this Beast is Like. she would have just Given up.It was hard enough as Dr Rao was up front with us and told us the Prognoses was Poor.

  She told me that the only reason she took the Chemo was for me,She knew that was what I wanted her to do.She did think me later for my insistence on her going to Dr and following though on every thing.

  She has made the commit that  she feels like she is in a mine field and is afraid to set her foot down. That's is one of the reasons every time she see Dr Rao she asked if they will take the port out,as it is a constant reminder of the Cancer, he just smiles and tells her it is best to keep it in if its not hurting her as we know the Beast will be Back.

  Yes I am a member of the Group. There is a lot of Info on it and because they us the same Portacalls on our Beast as with thers it helps, to have someplace to go and talk about this thing if for nothing else to be reminded that there are those with worse outcomes then Mary.