Introduction and questions

galinva
galinva Member Posts: 2
edited March 2014 in Ovarian Cancer #1
Hello ladies,
My name is Phyllis and I was diagnosed Oct 8 2007. I am 38 years old, married going on 17 yrs and have to boys ages 12 and 8.

I was stage Ic and grade 3. I had a complete hyst. (both ovaries, cervix, uterus, and lymph nodes). I then had 6 rounds of carbo/taxotere. I now am doing Xeloda (1500mg a day) and Hexalen (50mg 4x a day). I worked through the first 3 rounds and then went on FMLA after the 4th treatment. I returned to work about 3 weeks ago.
Now I have a few questions if that's okay:

Anyone else doing Hexalen and Xeloda after their 6 rounds?
It's been almost 8 weeks since my last IV chemo. How long before I should really be able to tell my hair is growing back? (seems kind of spotty to me)

Everything I read about OV cancer scares me half to death, which is really why I have not been posting here although I often stop in to read the other posts. I get so tired of people asking me questions about the cancer, asking how I feel, ect. Sometimes I just really do not want to think about it although it's never far from my mind. My Oncologist told me I would be around to see my children get married and that helps a lot, but I read so many post that are just down right frightening I get scared sometimes.
Sorry this is such a fumbled up post I guess talking about is still hard in many ways even to people who are in the same boat. Thank You.

Comments

  • mopar
    mopar Member Posts: 1,972 Member
    #2
    Hi Phyllis, and welcome to the Board!
    I'm so glad someone directed you to this website, because you will find lots of support, caring, and info here.

    I was Stage 1C also, but I'm not sure about the 'grade'. My doctor never discussed it with me, so I will have to look on my original reports. I'm also not familiar with Hexalen and Xeloda, so I'm sorry that I cannot give you any feedback there. But I also had the Carbo/Taxol and I can tell you that it won't be long before you see your hair coming back. Within 2 months I was wearing a very short but stylish hairdo. Everyone loved it! And it was so easy to take care of - wash and go! So, hang in there.

    Cancer can be scary, and very overwhelming. It can also make one weary when there are tons of question from others. I found that everyone was truly concerned when they asked 'how are you doing'. And some people didn't even ask, because I think they new I was probably being asked by so many others! Your oncologist has given you very encouraging news. I would hold on to that, live life one day at a time, and try not to look ahead to the 'what ifs'. It will only bring anxiety and needless worry. If something does arise that concerns you, there are lots of shoulders and ears here. In time I think you will find that it will be easier to talk about. Right now it's too fresh, you're just recovering from surgery and chemo, and you shouldn't expect too much from yourself. Your life has changed, but in many ways for the better. You will now be more in tune to your body, your health, and you will appreciate life so much more. And every day there is more and more encouraging news of hope, a cure, new treatments for all of us out here who need that.

    Looking forward to hearing from you again! Visit us when you can.

    (((Hugs))),
    Monika
  • dorion
    dorion Member Posts: 183
    #3
    Hi Phyllis
    Welcome and I really hate to say that because although we have each other here we know why we are here if that makes any sense. I know how you feel and I too won't read anything about it cos it scares me half to death too. I was diagnosed Dec. 4, 2007 and only on my second round of chemo second one was yesterday. Well it sounds like your doctor has given you very positive and uplifting news, that sounds wonderful. I'm stage 4 although it's been said stage 3 then they tell me it makes no difference 3, 4 same thing. I'm 49 and I have a 10 year old beautiful daughter and I only pray that I'm around long enough to see her married and with childern. You will find a lot of comfort and support in this room as I did and still do, I am scared although not every day but if I really stop to think about it I can spook myself pretty good. I can't answer any of your questions but the other ladies will do a pretty darn good job at it. I just go and do what the doctors tell me. I sometimes question myself because I seem not to be as proactive as everyone else here. I just try to stay focused and possitive which at times it's hard. My hair started to fall out last week so we just shaved it off. But once again keep coming back to the board and you will feel so much better, I know i do. Keep the faith and I will say a prayer for you. God Bless you and your family. You will do just fine girl.
    Linda
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • lindachris
    lindachris Member Posts: 173
    #5
    unknown said:

    This comment has been removed by the Moderator

    This all brings back what my wife and I did first thing with our diagnosis. I wanted to know all I could about ovarian cancer. So I raced to the library and brought home a bunch of books. After flipping through just two of them, Linda and I looked at each other and said, "No more books." Then we dove into the internet. And after visiting a couple sites and reading all kinds of conflicting information, we said "no more internet." Then a couple months down the road, I stumbled on this site and group and haven't looked back. Other people are the best resource for comfort, advice, hope, checking facts, checking rumors, smiles, hugs and all around better approach to dealing with ovarian cancer. It's not easy, but it can be better.
  • curlyq1971
    curlyq1971 Member Posts: 56
    #6
    Phyllis,

    I wanted to take this time to introduce myself to you and to Welcome you to the board. My name is Leslie and I was dx in August of 2005 with Stage 2 OvaCa and I was 34 at the time. I too had a complete hystrectomy along with the omentum and 9 lymph nodes removed (which tested negative for cancer) and I underwent 6 rounds of carbo/taxol finishing up in January of 2006. I have been cancer free for over 2 years now and at my last follow-up in January I was promoted to having my follow-ups every 6 months. After I was first dx I would read everything and anything that I could find on OvaCa on the internet and it would scare me half to death too, so I decided that I would just not read about it anymore and listen to my doctors and what they were telling me about my prognosis. The best advice that I can give you is to try and not let the "what ifs" consume you it will drive you crazy, and I know it is hard right now but trust me the farther out that you get from treatment it won't be on your mind as much. I have gotten back to living my life and I try to enjoy each and every day and live to the fullest. The best gift that came out of my cancer experience was my baby that my husband and I are in the process of adopting. We welcomed Jon into our home on May 3rd 2006 and he was only 7 months old at the time and he is truly a blessing. I also have a 11 year old son biologically, but my husband and I were never able to have another baby, so we became foster/adoptive parents and then OvaCa came along and we had to put that on hold but 4 months after treatment we were blessed with Jon. He is our "miracle baby", it is kinda funny I was dx in Aug. of 2005 and 9 months later I had a baby of sorts (that oughta throw people for a loop since I had a hysterectomy:)
    Just try and take one day at a time and you will find that with time you will start to feel "normal" again, I can't beleive that it has been almost 3 years since I was dx, and the only time I really think about a reoccurence is at the time of my follow-up appointments and I truly trust my medical team and beleive that they got it all and I am going to be around for a long time to come. Please keep the faith and don't let the disease own you.
    I have also never heard of the medications that you are taking, so I can't help you out there.
    As far as the hair growth it was about 8 weeks when I was sporting a cute, but short hairdo and the hair is really soft like baby hair when it comes in. It also came in curly (I had straight hair before chemo) and a little bit darker.
    I am glad that you came to this site, there are so many wonderful ladies on here to offer support, frienship, and hugs when you need it the most. Please keep us posted on your progress and if you have any other questions or concerns we are all here for you. Looking forward to talking with you again soon.
    Take Care,
    Leslie
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #7
    Hi Phyllis just wanted to welcome to the board also. Looking forward to getting to know you.

    Hugs N Prayers Bonnie
  • kris43
    kris43 Member Posts: 275
    #8
    Hi Phyllis. I too would say welcome but who really wants to be on a cancer site? I'm just so glad that you posted - it's scary out there when you need someone to talk to that "knows" what you are feeling and you have no where to turn.

    I am the opposite of most of the posts already because I LOVE to find out new things. I like to research and nothing makes me feel better then talking to the doctors and knowing what I am talking about or knowing what THEY are talking about. I think knowledge is power and I get questions from things I read that relate directly to me that I would have never thought to ask. So I'm weird that way.

    I was diagnosed July 18th, 2007 with Stage IIIC ovarian cancer. Had the total hysterectomy along with my cervix and omentum being taken. I am 43 and have a 21 year old son. I am so hoping I will be around to see him get married and have grandbabies for me one day. Need to keep the faith I guess. My doctor has never said to expect to be around - but I know the statistics and will do all I can to get to that point. My one goal right now is to be 50. Most people cringe at that age - but my life is different after diagnosis. I'm still looking for my new normal.

    Your hair will come in soon. My last treatment was Dec 29th and my scalp is pretty well covered now so it kind of looks like I have an actual style. I grew up blonde though and my hair came back dark and gray. Don't like that part - but I'll color it when it grows a little more.

    I have never heard of either medicine you are taking. I'll research it though - lol - because now I'm intrigued. Kind of like our friend who is getting the DaVinct Hysterectomy. That one still blows my mind. Who knew!

    I hope you find support, answer to your questions and whatever else you may need on this support site. There are many amazing women here who have so much knowledge. Keep posting!

    Take good care. Hugs.

    Kris
  • floridajo
    floridajo Member Posts: 480
    #9
    Welcome Phyllis!!!,
    I was dx. 11/04 stage 3c. I'm currently on chemo for my 2nd recurrecne. I have never been on the two drugs your on, and have never been on a maintainence chemo before. I'm also wondering if your being on these two drugs is stopping your hair from coming back as fast as it could. My sister is also a 1c,and she has never had any chemo,just surgery and that was 3 years ago,and she's still free of disease. This disease can be very overwehming at times,there is so much not known.....but I like your Dr.'s opinion that you'll be around for a long time.. Thats the best. My Onc 1st recommendation to me was to stay off the Internet,unless it was to get some support. You'll read alot of bad reports out there,some are out of date and others are just looking at the worse case scenario. I hope we hear from you alot more...welcome to the family...((((hugz)))~~~Joanne

    PS Dorion--I'll keep you in prayer as you continue your chemo,you'll be around for your daughter.

    Curly--Congrats on the recent addition to your family..I'll bet little Jon is perfect....

    Kris--I also will be 50 but my birthday is next month...I never thought I would see this age either..but the second line chemos are fairly easy on me,so as long as there is another chemo out there I'll keep treating this monster...beating it back down for a few precious months of living without chemo...(((((hugz))))to you all...~~~Joanne

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