MSFANCIFUL and any others who wouldn't mind sharing their docs' plans for their cancer

ggggsister
ggggsister Member Posts: 38
edited March 2014 in Ovarian Cancer #1
Hi everyone. It's been a while since I've been on this site. I'm here for my sister who was dx Stage III in April 2008. She's currently undergoing her third type of chemo--Doxil this time since January. Up until April it was really working for her. Then her CA-125 only went down 7 pts, in May they went up 36 pts. I was looking around the site hoping for some insight and came across MSFANCIFUL who was dx with Stage IV cancer (I believe) three years ago. You look fantastic! So I was hoping that MSFANCIFUL and others might be willing to share your paths to remission? My sister's doc isn't very positive--never has been--and seems to just be throwing things at the cancer to see what sticks. Could use some hope.

Thank you and blessings to all you teal warriors who are willing to share any part of your story...or none at all.

Comments

  • katie.bug
    katie.bug Member Posts: 14
    Positive thoughts
    Hello

    so sorry to hear about your sister. I was diagnosed last year with stage 4b. The tumor was the size of a softball and the cancer had invaded my uterus. My path to remission was surgery first, a complete hysterectomy and then 6 rounds of carboplatin and taxol. I've been cancer free since nov '09.

    If the dr isn't very positive then find a different oncologist. My oncologist was constantly upbeat, reassuring, always comforting, even when she had to tell me I had cancer, she reassured me that we would beat it. A positive attitude in your dr is very important. When I see my dr and she comes in with a smile on her face, it puts one on my face.

    Please keep in touch and let us know how your sister is doing

    hang in there
  • ggggsister
    ggggsister Member Posts: 38
    katie.bug said:

    Positive thoughts
    Hello

    so sorry to hear about your sister. I was diagnosed last year with stage 4b. The tumor was the size of a softball and the cancer had invaded my uterus. My path to remission was surgery first, a complete hysterectomy and then 6 rounds of carboplatin and taxol. I've been cancer free since nov '09.

    If the dr isn't very positive then find a different oncologist. My oncologist was constantly upbeat, reassuring, always comforting, even when she had to tell me I had cancer, she reassured me that we would beat it. A positive attitude in your dr is very important. When I see my dr and she comes in with a smile on her face, it puts one on my face.

    Please keep in touch and let us know how your sister is doing

    hang in there

    Postive thoughts
    Thank you, katie.bug, for your lightning-fast reply! I already told my sister about it. Congratulations, too, on your remission!(I think that's the same thing as being cancer free?) And I LOVE your picture. Be well.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    stage IV
    Dx Sept 2008. 5 cycles IV carbo/taxol, 3 cycle IP cisplat/taxol. I started Doxil Jan. '10 for my first recurrence. Unfortunately, it didn't work. I started Carbo/Gemzar this month. One infusion thus far. I feel fine. People wouldn't even know I was sick. I never really ask my doc what she thinks or how long I will live. I just ask, 'ok, whats next'? How old is your is, how long was she in remission and how bad is her recurrence?

    I believe I have a lot of fight left in me. This new treatment BETTER work. I had my first drawback. I couldn't get my chemo yesterday because my counts were too low. First time this has happened to me. My onc did say she gave me a slightly higher dose because I am young, healthy and could handle it. I guess my blood levels couldn't. I go back Wedneday and will get a lower dose...if my blood levels are ok.
  • ggggsister
    ggggsister Member Posts: 38
    nancy591 said:

    stage IV
    Dx Sept 2008. 5 cycles IV carbo/taxol, 3 cycle IP cisplat/taxol. I started Doxil Jan. '10 for my first recurrence. Unfortunately, it didn't work. I started Carbo/Gemzar this month. One infusion thus far. I feel fine. People wouldn't even know I was sick. I never really ask my doc what she thinks or how long I will live. I just ask, 'ok, whats next'? How old is your is, how long was she in remission and how bad is her recurrence?

    I believe I have a lot of fight left in me. This new treatment BETTER work. I had my first drawback. I couldn't get my chemo yesterday because my counts were too low. First time this has happened to me. My onc did say she gave me a slightly higher dose because I am young, healthy and could handle it. I guess my blood levels couldn't. I go back Wedneday and will get a lower dose...if my blood levels are ok.

    Stage IV
    Hi Nancy591, Thanks for your information, which I've passed on to my sister. I'm so sorry you're all in the same situation! My sister is 52; she was only in remission very briefly after her first cycle for maybe 4 or 5 months. Her second cycle of chemo only kept her in remission for a couple of months. I'm not even sure that's considered remission. We don't know much about her recurrence yet. She'll have a CT scan in about 3 or 4 weeks, and a new CA-125 at the end of this week. Even though her numbers went up prior to this Doxil treatment, they gave her the option of taking it or not. She elected to take it, so wouldn't it be lovely if her numbers went down! I ought to find out what her chemo treatments have been.

    Your picture is beautiful. How many people have told you you look like Jamie Curtis (in her much younger days)?

    I'm sending out positive thoughts that you're able to have your treatment tomorrow, and that this treatment WILL work!
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    Stage IV
    Hi Nancy591, Thanks for your information, which I've passed on to my sister. I'm so sorry you're all in the same situation! My sister is 52; she was only in remission very briefly after her first cycle for maybe 4 or 5 months. Her second cycle of chemo only kept her in remission for a couple of months. I'm not even sure that's considered remission. We don't know much about her recurrence yet. She'll have a CT scan in about 3 or 4 weeks, and a new CA-125 at the end of this week. Even though her numbers went up prior to this Doxil treatment, they gave her the option of taking it or not. She elected to take it, so wouldn't it be lovely if her numbers went down! I ought to find out what her chemo treatments have been.

    Your picture is beautiful. How many people have told you you look like Jamie Curtis (in her much younger days)?

    I'm sending out positive thoughts that you're able to have your treatment tomorrow, and that this treatment WILL work!

    I was DXed at Stage IIIc
    I was DXed at Stage IIIc last Sept. I had 6 rounds of Carbo/Taxol (IV - my Gyn/Oncologist would not give me IP, much to my frustration). I was NED (in remission) at the end of the treatment, per CT scan and blood work.

    If I understand the terminology correctly, once you have a recurrence your cancer is considered "recurrent" and is likely to come back again and again. Treatment is continued and the disease is treated as a chronic condition. The next door neighbor of my good friend Sue has had OVCA for 11 years and she is doing great, even though she has never been out of treatment more than 12 months, and usually 6 months or less. She works full time and if you didn't know she was sick, you'd think she was just an average person, getting on with her life.

    Even recurrent OVCA is not a death sentence. Some people do die of Ovarian Cancer, there is no getting around that, but people die from all kinds of other things, too. At the end of the day, everyone on the planet is terminal.

    Carlene
  • ggggsister
    ggggsister Member Posts: 38

    I was DXed at Stage IIIc
    I was DXed at Stage IIIc last Sept. I had 6 rounds of Carbo/Taxol (IV - my Gyn/Oncologist would not give me IP, much to my frustration). I was NED (in remission) at the end of the treatment, per CT scan and blood work.

    If I understand the terminology correctly, once you have a recurrence your cancer is considered "recurrent" and is likely to come back again and again. Treatment is continued and the disease is treated as a chronic condition. The next door neighbor of my good friend Sue has had OVCA for 11 years and she is doing great, even though she has never been out of treatment more than 12 months, and usually 6 months or less. She works full time and if you didn't know she was sick, you'd think she was just an average person, getting on with her life.

    Even recurrent OVCA is not a death sentence. Some people do die of Ovarian Cancer, there is no getting around that, but people die from all kinds of other things, too. At the end of the day, everyone on the planet is terminal.

    Carlene

    Your comment
    Thank you,Hissy_Fitz: Your response gave my sister comfort.

    Blessings to you.
  • msfanciful
    msfanciful Member Posts: 559
    Hi ggggsister,
    I hate I am

    Hi ggggsister,

    I hate I am just seeing your post, I've been out for a bit, but first; I am so glad to to me you on behalf of your sister.

    As you know; stage IV is NOT a stage anyone wants to hear and ever since that fateful day it has been a whirlwind of a journey. :-)

    I will gladly share with you if it will help...

    On February 2007 I was admitted into hospital emergency with pneumonia, only to find out cat-scans showed masses as well that were indeed stage IV ovca. After healing from the pneumonia, one week later I went into emergency surgery. One week after surgery my port was implanted (above the upper right breast). One week after the port was implanted I began my first round of chemo for 8 months total.(Carbo/taxol). After 8 months my numbers went from 1400 to about 19. I was in remission for 1yr and 1 month before my numbers began climbing in which my doctor felt cancer was attempting to regrow again.

    One thing that I must stress is that it is important that your sister has a oncologist/surgeon who specializes in her particular cancer. I know it makes an astounding difference with ones' survival rate.

    Keep in mind my doctor is verrry proactive and does not believe in giving cancer a chance to take hold (if possible); so she always stays on top of the numbers.

    I then started a second round of chemo for six-months; it consisted of Doxil, carbo and Avastin. This particular chemo was connected with the research study drug Avastin for women who had recurrent ovarian cancer. (Which was me).

    I felt the Doxil,Carbo,Avastin didn't do as well for me and I only remained in remission for 6-months. :-(. In fact my numbers went up to about 32.

    I then did a third round of oral chemo medication called "Etopocide" for almost 2months. After my doctor saw my numbers rise to 63, she took me off of them right-away. For me; the "etopocide" didn't work.

    Keep in mind also, that my doctor gauged my cancer activity, by way of cat-scans (although I have no signs of cancer in my organs, she keeps an eye on two of my para-aortic lymph-nodes that has a tendency to increase and decrease as well as my numbers. I know she has extended my life with her tenacity against this disease.

    To date, after 9 once-a-week maintenance doses of "taxol", for the first time since (I don't know how long)... I am now in remission. My number is 3! ! ! I think that's why I've been so busy, just living life while I have the opportunity! Yea!

    One other thing, it is very important that your sister has a doctor who she feels is in her corner and honest with her as well.

    I digress, but I hope this helps and pleassse feel free to contact me anytime if you want specifics about my advice. I realize it might be a bit overwhelming and a lot of info can go over your head sometimes.

    I pray all goes well for you and your sister.

    Love,

    Sharon
  • ggggsister
    ggggsister Member Posts: 38

    Hi ggggsister,
    I hate I am

    Hi ggggsister,

    I hate I am just seeing your post, I've been out for a bit, but first; I am so glad to to me you on behalf of your sister.

    As you know; stage IV is NOT a stage anyone wants to hear and ever since that fateful day it has been a whirlwind of a journey. :-)

    I will gladly share with you if it will help...

    On February 2007 I was admitted into hospital emergency with pneumonia, only to find out cat-scans showed masses as well that were indeed stage IV ovca. After healing from the pneumonia, one week later I went into emergency surgery. One week after surgery my port was implanted (above the upper right breast). One week after the port was implanted I began my first round of chemo for 8 months total.(Carbo/taxol). After 8 months my numbers went from 1400 to about 19. I was in remission for 1yr and 1 month before my numbers began climbing in which my doctor felt cancer was attempting to regrow again.

    One thing that I must stress is that it is important that your sister has a oncologist/surgeon who specializes in her particular cancer. I know it makes an astounding difference with ones' survival rate.

    Keep in mind my doctor is verrry proactive and does not believe in giving cancer a chance to take hold (if possible); so she always stays on top of the numbers.

    I then started a second round of chemo for six-months; it consisted of Doxil, carbo and Avastin. This particular chemo was connected with the research study drug Avastin for women who had recurrent ovarian cancer. (Which was me).

    I felt the Doxil,Carbo,Avastin didn't do as well for me and I only remained in remission for 6-months. :-(. In fact my numbers went up to about 32.

    I then did a third round of oral chemo medication called "Etopocide" for almost 2months. After my doctor saw my numbers rise to 63, she took me off of them right-away. For me; the "etopocide" didn't work.

    Keep in mind also, that my doctor gauged my cancer activity, by way of cat-scans (although I have no signs of cancer in my organs, she keeps an eye on two of my para-aortic lymph-nodes that has a tendency to increase and decrease as well as my numbers. I know she has extended my life with her tenacity against this disease.

    To date, after 9 once-a-week maintenance doses of "taxol", for the first time since (I don't know how long)... I am now in remission. My number is 3! ! ! I think that's why I've been so busy, just living life while I have the opportunity! Yea!

    One other thing, it is very important that your sister has a doctor who she feels is in her corner and honest with her as well.

    I digress, but I hope this helps and pleassse feel free to contact me anytime if you want specifics about my advice. I realize it might be a bit overwhelming and a lot of info can go over your head sometimes.

    I pray all goes well for you and your sister.

    Love,

    Sharon

    Thank you, Sharon
    Thank you for your reply and your prayers for my sister. Congrats, too, on your oh-so-low
    CA-125! Wow. I've passed along your story to my sister, Tammy. It will give her LOTS of hope. She begins a new round of treatment in a couple of weeks: topotecan this time. I've read from some of the women here that it can make a person feel pretty nauseous...but I won't tell Tammy that (power of suggestion and all).

    I hope your summer is fabulous, full of lots of friends and family and everything else that matters in your life.

    Love and hugs,
    gail
  • Angelasmom2
    Angelasmom2 Member Posts: 146

    Stage IV
    Hi Nancy591, Thanks for your information, which I've passed on to my sister. I'm so sorry you're all in the same situation! My sister is 52; she was only in remission very briefly after her first cycle for maybe 4 or 5 months. Her second cycle of chemo only kept her in remission for a couple of months. I'm not even sure that's considered remission. We don't know much about her recurrence yet. She'll have a CT scan in about 3 or 4 weeks, and a new CA-125 at the end of this week. Even though her numbers went up prior to this Doxil treatment, they gave her the option of taking it or not. She elected to take it, so wouldn't it be lovely if her numbers went down! I ought to find out what her chemo treatments have been.

    Your picture is beautiful. How many people have told you you look like Jamie Curtis (in her much younger days)?

    I'm sending out positive thoughts that you're able to have your treatment tomorrow, and that this treatment WILL work!

    Nancy
    I think you are much prettier than Jamie curtis.