I'm glad I found you

kikz
kikz Member Posts: 1,345 Member
edited March 2014 in Ovarian Cancer #1
My name is Karen (Kiki is my knickname). I was diagnosed with Stage IV ovarian cancer on March 16, 2010. Up until then I was in perfect health. Fighting the battle of the bulge all my life but not on any medication and my doctor referred to me as one of her healthiest patients. Well, as you all know, my life is forever changed. I have not worked since March 1 because I was ill. This has been so difficult for my 85-year old mother who has now experienced anxiety for the first time in her life. I have a 29-year old son who is now worried about losing his mom when he just lost his dad in September of 2007. I am scared althought the chemo has done its work and I am scheduled for surgery on June 21. But the hardest part I believe is the isolation and lonliness. Many of my friends and family do not come around or call me. I know it is because they are afraid of facing me, and even though I undnerstand how hard it is for them, I have to admit I feel hurt and somewhat forgotten. Reading some of your posts makes me feel I have found kindred spirits that I so desperately need at this time. I know a positive attitude is vital to recovery but it is hard to keep my spirits up when I have these feelings.

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #2
    We are glad you found us,
    We are glad you found us, too, Kiki. We will be your sisters. We will always be here for you, even though "here" is some weird, science fiction thing that I do not claim to understand, ie: the internet.

    I was diagnosed Stage IIIc last Sept. I was stunned. Totally speechless....and that, for me, is not something easily accomplished. I had the big surgery (16 days in the hospital with lots of complications) and 6 treatments of Carbol/Taxol. My starting CA 125 was 4000 and it is holding steady at 6 and 7 now. I am doing a year of Taxol maintenance - just in case. It's the chicken soup of chemotherapy. It can't hurt (usually not, anyway), and it might help push back a recurrence.

    The first thing I did was Google all things OC. That didn't lift my spirits much (to say the least), but it did lead me here.

    I don't have a large family, and what I do have (my grown kids and their kids) sometimes come around TOO often, but I know what you mean about friends behaving strangely. Two of my friends suggested to my husband, when I was in the hospital and could not eat and was vomiting bile and anything else I swallowed, that maybe I was making myself throw up. Bizarre....just bizarre.

    A lot of us get steroids with our chemo cocktails and can't sleep, so drop in anytime.

    Carlene
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    welcome
    Unfortunately, welcome to the club. Your story sounds like so many of the women here. In perfect healthy, never sick ...etc. I am 43 with 3 kids. My younger two are 6 and 4yrs. My fears are leaving them way too soon. I was dx'd stage 4 on Sept. 08. I stopped working when I was dx'd as I wanted to spend my time with my kids.

    My co workers were great initally but now it seems I dont' hear from them anymore. Of course it is going on 2yrs since I worked and life does go on. I certainly don't want to be the depressing one to talk to but cancer is my life now. It is the topic of most of my conversations.

    The good news for you is 80-85% of women respond well to the carbo/taxol regimen. Good luck with your upcoming surgery.

    There are good and bad stories on here. Some people are not able to handle the bad. I did not join this group until 1yr after diagnosis. I did not want to read anything bad. But, alas, here I am. I do hate reading bad news. There are at least 3 of our 'senior' sisters on here who are not doing well. It is a very scary disease.

    Good luck to you!! Visit often and share your experiences.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #4
    Welcome Kiki
    and I'm truly sorry that you had to come here. Please check in as often as you like and let us know how you are doing. Wishing you the best for your surgery on the 21st.
    Hugs,
    kathleen
  • sanam
    sanam Member Posts: 106
    #5
    kayandok said:

    Welcome Kiki
    and I'm truly sorry that you had to come here. Please check in as often as you like and let us know how you are doing. Wishing you the best for your surgery on the 21st.
    Hugs,
    kathleen

    Dear Kiki
    welcome on board
    Dear Kiki

    welcome on board though I wish we all were met on another board.
    Finding this site and knowing ladies here was one the best things that has ever happened to me.We are all standing here for eachother.
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #6
    glad u found us 2
    I am glad you found this board too, you will recieve such wisdom and support from all those who also come here. hugs ♥ prayers bonnie
  • msfanciful
    msfanciful Member Posts: 559
    #7
    Hissy_Fitz said:

    We are glad you found us,
    We are glad you found us, too, Kiki. We will be your sisters. We will always be here for you, even though "here" is some weird, science fiction thing that I do not claim to understand, ie: the internet.

    I was diagnosed Stage IIIc last Sept. I was stunned. Totally speechless....and that, for me, is not something easily accomplished. I had the big surgery (16 days in the hospital with lots of complications) and 6 treatments of Carbol/Taxol. My starting CA 125 was 4000 and it is holding steady at 6 and 7 now. I am doing a year of Taxol maintenance - just in case. It's the chicken soup of chemotherapy. It can't hurt (usually not, anyway), and it might help push back a recurrence.

    The first thing I did was Google all things OC. That didn't lift my spirits much (to say the least), but it did lead me here.

    I don't have a large family, and what I do have (my grown kids and their kids) sometimes come around TOO often, but I know what you mean about friends behaving strangely. Two of my friends suggested to my husband, when I was in the hospital and could not eat and was vomiting bile and anything else I swallowed, that maybe I was making myself throw up. Bizarre....just bizarre.

    A lot of us get steroids with our chemo cocktails and can't sleep, so drop in anytime.

    Carlene

    Hello Karen,
    Please know we
    Hello Karen,

    Please know we are all happy to be here for you.


    Sharon
  • vj1
    vj1 Member Posts: 150
    #8
    BonnieR said:

    glad u found us 2
    I am glad you found this board too, you will recieve such wisdom and support from all those who also come here. hugs ♥ prayers bonnie

    ppc
    Hi I am new to this sight and already have been warmed with everyone's feelings. I was dx with ovarian ca stage 3, one year ago. surgery, chemo, pt scan (negative) all went well. I see dr every 3 months for "pelvic inspection" as my husband says. I am concerned where this will go but I cannot dwell on it; too much wasted energy. I am interested in knowing if any one has heard of the tumeric usage for an aid to the spread of ca. I know it doesn't replace chemo, etc.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #9
    vj1 said:

    ppc
    Hi I am new to this sight and already have been warmed with everyone's feelings. I was dx with ovarian ca stage 3, one year ago. surgery, chemo, pt scan (negative) all went well. I see dr every 3 months for "pelvic inspection" as my husband says. I am concerned where this will go but I cannot dwell on it; too much wasted energy. I am interested in knowing if any one has heard of the tumeric usage for an aid to the spread of ca. I know it doesn't replace chemo, etc.

    Hello!
    Here are two articles. One is from ovariancancer.org the other is from memorial sloan kettering's website. Any problems viewing the articles let me know.


    http://www.ovariancancer.org/2010/04/30/curry-spice-aids-cancer-treatment/

    http://www.mskcc.org/mskcc/html/69401.cfm

    One year and still cancer free? That is great!!!

    Good luck!
  • RoniLynn
    RoniLynn Member Posts: 8
    #10
    Hi! My name is Roni
    Hi! My name is Roni (Verronica really, but YUCK). I am also new to this site. In October, 2009, I was diagnosed with ovarian cancer, had surgery and completed my chemo in March, 2010. I went back to work in April and had two months of "clear" check ups. Last week I started having symptoms that my cancer had returned and a CT scan confirmed it. So I am headed back to chemo, still waiting on a treatment plan -- why does the insurance company get a say? I have to have a port put in this time and I see the surgeon on Thursday and I am really, really nervous about this. I am very fortunate that I have a wonderful support system, but this time I am having a harder time, I think this site may be what I have been looking for.
  • kikz
    kikz Member Posts: 1,345 Member
    #11
    RoniLynn said:

    Hi! My name is Roni
    Hi! My name is Roni (Verronica really, but YUCK). I am also new to this site. In October, 2009, I was diagnosed with ovarian cancer, had surgery and completed my chemo in March, 2010. I went back to work in April and had two months of "clear" check ups. Last week I started having symptoms that my cancer had returned and a CT scan confirmed it. So I am headed back to chemo, still waiting on a treatment plan -- why does the insurance company get a say? I have to have a port put in this time and I see the surgeon on Thursday and I am really, really nervous about this. I am very fortunate that I have a wonderful support system, but this time I am having a harder time, I think this site may be what I have been looking for.

    Thank you ladies for your
    Thank you ladies for your comments. I guess as women we have a lot more in common than cancer. Heartache is something for which there is no cure except time and that really only serves to dull the pain. I admire you all for your bravery in the face of so much uncertainty. I think that is what gets to me the most. The unknown, the uncertainty of all this. I could deal with anything if I knew there was a happy ending. But I know I do not have that luxury. So as I said earlier I am trying to make the most of each day.

    Alas, it is not that easy. I went to a pre-op appointment today and found that my CA 125 had gone from 858 tp 1550 after my last chemo. I don't understand that. My first CA 125 was 6971 than went up to 8000+ before chemo began. It went down to 3240 after the first chemo and than 858 after the second. So needless to say I was kind of down in the mouth when I received that information. I am wondering what it is now after four weeks with no chemo. I hope I can muster the inner strength necessary to fight this disease. It seems like it is a constant battle with small victories and huge setbacks.

    Once again let me say, I am so glad I found you. Who else can understand what I am going through?
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #12
    RoniLynn said:

    Hi! My name is Roni
    Hi! My name is Roni (Verronica really, but YUCK). I am also new to this site. In October, 2009, I was diagnosed with ovarian cancer, had surgery and completed my chemo in March, 2010. I went back to work in April and had two months of "clear" check ups. Last week I started having symptoms that my cancer had returned and a CT scan confirmed it. So I am headed back to chemo, still waiting on a treatment plan -- why does the insurance company get a say? I have to have a port put in this time and I see the surgeon on Thursday and I am really, really nervous about this. I am very fortunate that I have a wonderful support system, but this time I am having a harder time, I think this site may be what I have been looking for.

    Dear Roni....
    First, I have
    Dear Roni....

    First, I have to tell you that when my daughter was about 8 years old, she informed me that she was mad at me for not naming her Veronica. It was, she said, the prettiest name she had ever heard. So one person's "yuk" is music to another's ears.

    I was diagnosed just a few weeks before you - Sept 17th, 2009. I finished my chemo (6 rounds of Carbo/Taxol) in late Feb. I am doing a year of Taxol maintenance, with my 4th treatment coming up this week.

    What were the symptoms that led to the confirmation of your recurrence? The possibility makes me so anxious, I think every twinge is cancer. I can only rely on my CA 125 (which is holding steady at 6-7) as an indication that all is well.

    I have a Power Port in my chest. Don't be nervous - it's a piece of cake to get it placed and a God send for the treatments. They give you numbing cream to apply it is accessed and you won't feel a thing. I had to have several blood transfusions while I was in treatment, plus blood and TPN feeding in the hospital. The port made those so much easier.

    I don't know what kind of insurance you have, but my guess is that they have a "say" because they have to pick up the tab, and cancer treatment is VERY expensive. Avastin, for example, is not approved for Ovarian Cancer, and some insurance companies will pay for it, while others won't.

    Carlene
  • RoniLynn
    RoniLynn Member Posts: 8
    #13
    Hissy_Fitz said:

    Dear Roni....
    First, I have
    Dear Roni....

    First, I have to tell you that when my daughter was about 8 years old, she informed me that she was mad at me for not naming her Veronica. It was, she said, the prettiest name she had ever heard. So one person's "yuk" is music to another's ears.

    I was diagnosed just a few weeks before you - Sept 17th, 2009. I finished my chemo (6 rounds of Carbo/Taxol) in late Feb. I am doing a year of Taxol maintenance, with my 4th treatment coming up this week.

    What were the symptoms that led to the confirmation of your recurrence? The possibility makes me so anxious, I think every twinge is cancer. I can only rely on my CA 125 (which is holding steady at 6-7) as an indication that all is well.

    I have a Power Port in my chest. Don't be nervous - it's a piece of cake to get it placed and a God send for the treatments. They give you numbing cream to apply it is accessed and you won't feel a thing. I had to have several blood transfusions while I was in treatment, plus blood and TPN feeding in the hospital. The port made those so much easier.

    I don't know what kind of insurance you have, but my guess is that they have a "say" because they have to pick up the tab, and cancer treatment is VERY expensive. Avastin, for example, is not approved for Ovarian Cancer, and some insurance companies will pay for it, while others won't.

    Carlene

    Thank you Carlene,
    The name
    Thank you Carlene,

    The name thing is always an "issue" for me, my Mom wanted it different so she spelled mine with two R's -- every legal paper I have ever had, had to be redone. LOL

    My symptoms were very similiar this time as last. My tummy started getting bloated, everything I eat goes right through me within an hour or two, and I have tummy pain. My CA 125 numbers were holding at 13-15, but the doc decided to send me for a CT scan to check things out (it had only been 2 months since my previous one). He found spots on my surgery scar tissue, and on the lymph nodes in my groin area, and a small mass in my tummy area -- I already knew before he told us though. What is the Taxol maintenance? I am not good at remembering the names of the meds that they give me at chemo, but I hadn't heard about others being giving when the treatments were completed.

    I keep telling myself that the port is a good thing. My veins are shot from my last round of chemo, and it is nearly impossible to get enough blood to do my labs. So I know I have to have it, the unknown is just kind of scary.

    Roni
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #14
    RoniLynn said:

    Thank you Carlene,
    The name
    Thank you Carlene,

    The name thing is always an "issue" for me, my Mom wanted it different so she spelled mine with two R's -- every legal paper I have ever had, had to be redone. LOL

    My symptoms were very similiar this time as last. My tummy started getting bloated, everything I eat goes right through me within an hour or two, and I have tummy pain. My CA 125 numbers were holding at 13-15, but the doc decided to send me for a CT scan to check things out (it had only been 2 months since my previous one). He found spots on my surgery scar tissue, and on the lymph nodes in my groin area, and a small mass in my tummy area -- I already knew before he told us though. What is the Taxol maintenance? I am not good at remembering the names of the meds that they give me at chemo, but I hadn't heard about others being giving when the treatments were completed.

    I keep telling myself that the port is a good thing. My veins are shot from my last round of chemo, and it is nearly impossible to get enough blood to do my labs. So I know I have to have it, the unknown is just kind of scary.

    Roni

    Taxol maintenance is
    Taxol maintenance is recommended by some doctors for patients who are NED (no evidence of disease) after completion of their initial therapy. It's one drug (Taxol) at a reduced dose, every four weeks for a year. Some doctors think it can push back a recurrence.

    A recurrence after 3 months is very early. I am so sorry you got such poor results from your chemo. I would bet a nickel that a lot of us who have recurrences at six or eight months were like you, but did not have a CT or PET scan to confirm it, because of "normal" CA 125 readomgs. I am amazed that your initial symptoms included loose stools. Most all of us had issues with constipation, and many still do.

    Carlene
  • RoniLynn
    RoniLynn Member Posts: 8
    #15
    Hissy_Fitz said:

    Taxol maintenance is
    Taxol maintenance is recommended by some doctors for patients who are NED (no evidence of disease) after completion of their initial therapy. It's one drug (Taxol) at a reduced dose, every four weeks for a year. Some doctors think it can push back a recurrence.

    A recurrence after 3 months is very early. I am so sorry you got such poor results from your chemo. I would bet a nickel that a lot of us who have recurrences at six or eight months were like you, but did not have a CT or PET scan to confirm it, because of "normal" CA 125 readomgs. I am amazed that your initial symptoms included loose stools. Most all of us had issues with constipation, and many still do.

    Carlene

    I am going to ask my doc
    I am going to ask my doc about Taxol when I complete this round of treatments. I reaceived a call after work today that I am to start my chemo in the morning. I don't have any details of the meds, time frame, or anything, but I am ready to get this started.

    Roni
  • Unknown
    Unknown
    #16
    RoniLynn said:

    I am going to ask my doc
    I am going to ask my doc about Taxol when I complete this round of treatments. I reaceived a call after work today that I am to start my chemo in the morning. I don't have any details of the meds, time frame, or anything, but I am ready to get this started.

    Roni

    This comment has been removed by the Moderator
  • favoriteja
    favoriteja Member Posts: 3
    #17
    sanam said:

    Dear Kiki
    welcome on board
    Dear Kiki

    welcome on board though I wish we all were met on another board.
    Finding this site and knowing ladies here was one the best things that has ever happened to me.We are all standing here for eachother.

    Looking for daughters out there caring for their Moms
    Hi. I am searching for a network of other daughters that are in the same position as me. It is hard sometimes being scared for my Mom and at the same time, needing to be strong. I am looking for guidance to help me make it through a rough patch. Mom my is the one battling for her life and I am the one feeling drained.

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