Sertoli-Lydig stromol cord Ovarian cancer

Felicia_205
Felicia_205 Member Posts: 79 Member
in Ovarian Cancer #1
Does anybody have or know somebody who has this type of cancer. If so what was your experience and what kind of treatment did you take. I havent met another person who has had this type of cancer because its so rare. Most of the doctors I have seen havent treated a case and I just had my 4th recurrance and I am starting to lose hope.

Comments

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #2
    Dear Felicia
    I am so sorry you are going through this at such a young age. I have never heard of this type of ovarian cancer but hopefully somebody else on this board can provide you with some specific information. I can only imagine how daunting and discouraging it is to have a fourth reocurrance but please don't give up and know that we are here to support you.

    Hugs,
    Kelly
  • Felicia_205
    Felicia_205 Member Posts: 79 Member
    #3
    lovesanimals said:

    Dear Felicia
    I am so sorry you are going through this at such a young age. I have never heard of this type of ovarian cancer but hopefully somebody else on this board can provide you with some specific information. I can only imagine how daunting and discouraging it is to have a fourth reocurrance but please don't give up and know that we are here to support you.

    Hugs,
    Kelly

    Thanks
    Thankyou very much for your support. :)
  • Mwee
    Mwee Member Posts: 1,338
    #4
    Welcome, Felicia
    I had never heard of this type of OVCA and so I checked it out online. It is indeed very rare, I believe the articles say it's makes up for 0.05% of OVCAs. I would certainly like to hear more of your story, if you'd like to share. Many of us have been battling through recurrances and we know how hard it is go it alone. You've come to the right place.
    ((((HUGS)))) Maria
  • Felicia_205
    Felicia_205 Member Posts: 79 Member
    #5
    Mwee said:

    Welcome, Felicia
    I had never heard of this type of OVCA and so I checked it out online. It is indeed very rare, I believe the articles say it's makes up for 0.05% of OVCAs. I would certainly like to hear more of your story, if you'd like to share. Many of us have been battling through recurrances and we know how hard it is go it alone. You've come to the right place.
    ((((HUGS)))) Maria

    My story
    Well the major symptoms started when I was about 17. My hormones started going out of control my testosterone was in the male range at 500. They misdiagnosed me with PCOS and treated me with lupron shots which I later found out causes my type of tumor to grow. Shortly after I stopped taking the shots I started to feel pain and pressure in my pelvis. When the pain became unbearable I went to the ER and they sent me home saying I probably just had a stomach virus. The pain was so bad I would just lay on the floor screaming for hours. I was throwing up constantly and couldnt hold down a sip of water. I went 2 more times over the next 2 weeks before they finally did a CT and told me a had an extreamly large cyst the size of a small watermelon on my ovary and that I was bleeding to death internally. The surgeon said she couldnt believe I was still alive. They removed my left ovary, omentum, appendix, 6 inches of my small bowel, and 3 liters of blood from my stomach.

    So soon after the surgery I started Taxol and carboplatin. I completed 6 cycles of that but I was having so many problems with my mediport It took forever. The surgeon put it in 2 inches deep so I had to go to the hospital and get it accessed with Xray before each treatment. Sometimes it took up to 2 hours of them poking me over and over with a 2 inch needle.

    I had a reccurence within 6 months. This time I had 4 tumor sites. So they did another surgery and put me on BEP protocol. I didnt think I was going to survive the BEP I was constantly being hospitalized and receiveing transfusions. I got septic once with a flesh eating bacteria and had to be on IV antibiotics for 6 weeks.

    4 months after I was done with the BEP I had another mass they did surgery but I didnt have to do any chemo because they said that the cancer cells were dead. I took that as a really good sign but about 6 months later It came back again. They did another surgery and removed another tumor and my remaining ovary. He left my uterus in though which was nice. I was hospitalized again 4 days after I got out because I had an infected abscess and was septic. They put a drain in and didnt sedate me or give me pain medicine because my blood pressure was too low. I felt everything It was extremely painful.

    My oncologysts says I need to do high dose chemotherapy with stemcell recovery because The cancer isn't in a weakend state and its just as strong as it was when they first dicovered it. Its a horrible feeling knowning that everything I went through in the past 2 years was for nothing. Im sure many can relate. My oncologyst doesnt have much faith that the chemo is going to work because my type of cancer tends to be resistant but he said this is the last chance they have to cure it.
  • kikz
    kikz Member Posts: 1,345 Member
    #6
    Felicia_205 said:

    My story
    Well the major symptoms started when I was about 17. My hormones started going out of control my testosterone was in the male range at 500. They misdiagnosed me with PCOS and treated me with lupron shots which I later found out causes my type of tumor to grow. Shortly after I stopped taking the shots I started to feel pain and pressure in my pelvis. When the pain became unbearable I went to the ER and they sent me home saying I probably just had a stomach virus. The pain was so bad I would just lay on the floor screaming for hours. I was throwing up constantly and couldnt hold down a sip of water. I went 2 more times over the next 2 weeks before they finally did a CT and told me a had an extreamly large cyst the size of a small watermelon on my ovary and that I was bleeding to death internally. The surgeon said she couldnt believe I was still alive. They removed my left ovary, omentum, appendix, 6 inches of my small bowel, and 3 liters of blood from my stomach.

    So soon after the surgery I started Taxol and carboplatin. I completed 6 cycles of that but I was having so many problems with my mediport It took forever. The surgeon put it in 2 inches deep so I had to go to the hospital and get it accessed with Xray before each treatment. Sometimes it took up to 2 hours of them poking me over and over with a 2 inch needle.

    I had a reccurence within 6 months. This time I had 4 tumor sites. So they did another surgery and put me on BEP protocol. I didnt think I was going to survive the BEP I was constantly being hospitalized and receiveing transfusions. I got septic once with a flesh eating bacteria and had to be on IV antibiotics for 6 weeks.

    4 months after I was done with the BEP I had another mass they did surgery but I didnt have to do any chemo because they said that the cancer cells were dead. I took that as a really good sign but about 6 months later It came back again. They did another surgery and removed another tumor and my remaining ovary. He left my uterus in though which was nice. I was hospitalized again 4 days after I got out because I had an infected abscess and was septic. They put a drain in and didnt sedate me or give me pain medicine because my blood pressure was too low. I felt everything It was extremely painful.

    My oncologysts says I need to do high dose chemotherapy with stemcell recovery because The cancer isn't in a weakend state and its just as strong as it was when they first dicovered it. Its a horrible feeling knowning that everything I went through in the past 2 years was for nothing. Im sure many can relate. My oncologyst doesnt have much faith that the chemo is going to work because my type of cancer tends to be resistant but he said this is the last chance they have to cure it.

    You have gone through so much
    Felicia. It's amazing to me how misdiagnosed ovarian cancer is. Or I should say undiagnosed. The fact that you were in the ER and sent home is ludicrous but something I have read about so many times. Some women suffer months before they get a correct diagnosis.

    I am glad you found this site. I believe it has kept me sane the last couple of years. The women here are so supportive and kind. At times I feel they are all I have; mainly because they understand like no one else in my life can. My family and friends are great but I shield them from my feelings most of the time.

    Please know we are here and I wish you the best in your journey.

    Karen
  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #7
    Felicia_205 said:

    My story
    Well the major symptoms started when I was about 17. My hormones started going out of control my testosterone was in the male range at 500. They misdiagnosed me with PCOS and treated me with lupron shots which I later found out causes my type of tumor to grow. Shortly after I stopped taking the shots I started to feel pain and pressure in my pelvis. When the pain became unbearable I went to the ER and they sent me home saying I probably just had a stomach virus. The pain was so bad I would just lay on the floor screaming for hours. I was throwing up constantly and couldnt hold down a sip of water. I went 2 more times over the next 2 weeks before they finally did a CT and told me a had an extreamly large cyst the size of a small watermelon on my ovary and that I was bleeding to death internally. The surgeon said she couldnt believe I was still alive. They removed my left ovary, omentum, appendix, 6 inches of my small bowel, and 3 liters of blood from my stomach.

    So soon after the surgery I started Taxol and carboplatin. I completed 6 cycles of that but I was having so many problems with my mediport It took forever. The surgeon put it in 2 inches deep so I had to go to the hospital and get it accessed with Xray before each treatment. Sometimes it took up to 2 hours of them poking me over and over with a 2 inch needle.

    I had a reccurence within 6 months. This time I had 4 tumor sites. So they did another surgery and put me on BEP protocol. I didnt think I was going to survive the BEP I was constantly being hospitalized and receiveing transfusions. I got septic once with a flesh eating bacteria and had to be on IV antibiotics for 6 weeks.

    4 months after I was done with the BEP I had another mass they did surgery but I didnt have to do any chemo because they said that the cancer cells were dead. I took that as a really good sign but about 6 months later It came back again. They did another surgery and removed another tumor and my remaining ovary. He left my uterus in though which was nice. I was hospitalized again 4 days after I got out because I had an infected abscess and was septic. They put a drain in and didnt sedate me or give me pain medicine because my blood pressure was too low. I felt everything It was extremely painful.

    My oncologysts says I need to do high dose chemotherapy with stemcell recovery because The cancer isn't in a weakend state and its just as strong as it was when they first dicovered it. Its a horrible feeling knowning that everything I went through in the past 2 years was for nothing. Im sure many can relate. My oncologyst doesnt have much faith that the chemo is going to work because my type of cancer tends to be resistant but he said this is the last chance they have to cure it.

    have you looked into any
    have you looked into any clinical trials? Kim
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #8
    kimberly sue 63 said:

    have you looked into any
    have you looked into any clinical trials? Kim

    Felicia
    Thank you so much for sharing your story with us. Please know that I'm sending you big, big hugs. Please keep us posted when you can.

    Kelly
  • Felicia_205
    Felicia_205 Member Posts: 79 Member
    #9
    kimberly sue 63 said:

    have you looked into any
    have you looked into any clinical trials? Kim

    Its something my doctor
    Its something my doctor brought up but I havent really looked into any. I am definately considering it. How would I go about finding them?
  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #10
    Felicia_205 said:

    Its something my doctor
    Its something my doctor brought up but I havent really looked into any. I am definately considering it. How would I go about finding them?

    Talk with your physician. I
    Talk with your physician. I have a poster at my doctor's office to remind me to ask if needed. KIm
  • 2timothy1 7
    2timothy1 7 Member Posts: 345
    #11
    Felicia_205 said:

    Its something my doctor
    Its something my doctor brought up but I havent really looked into any. I am definately considering it. How would I go about finding them?

    Hi there. So sorrry you have
    Hi there. So sorrry you have to deal with this. You remind me of my daughter a lot. She has red hair and pretty big eyes like you. Don't know if you have researched iv vitamen c infusions or not but it sounds encouraging. Im going to see dr later this month who does them. The vit C mimics sugar so the cancer cells readily take it in and then hydrogen peroxide forms which kills the cancer cell. This must be done by iv . If taken by mouth in high doses, the body will excrete the excess thru urine and it hasnt the same effect on the cancer cells. Saying a prayer for you now!
    Shawnna

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