New to the club

Just diagnosed and feeling a bunch of emotions.  It is stage 3a  and it's the most common type and it started in my falliopian tubes (and I am 44 yrs. old) and I was virtually without symptoms.   I just had a hysterectomy and I am so worried. I start IP chemo next week.  The internet has been blessing although I get bummed reading about the return rates of this disease.  The more i read, it appears this disease comes back about 70% of the time and will need to be chronically managed.   I am planning to take take supplements during chemo - any advice about this?  Any other advice that you can share as I start this journey... I am about to be tested for BRCA 1 & 2.  I am interested in given that the retrun rates are so high can women get on maintenance chemo before the disease rears its ugly head.  Is that an option.  Also, my doctor said there were no clinical trails -- how do you look for them and advocate for your self.... Thanks everyone.  

Comments

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    New

    so sorry you have to deal with this at a young age. I am stage three also. Only had two short remissions. After your chemo I suggest you get at least three days of IV fluids...your Dr. Can help you with home health care nurses. I take vit D and Magnesium and vit B12. Don't pay attention to stats on the net...not always accurate. There are clinical trials for some....look into it. Best of luck as you start your journey.   Stay strong...Val

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    Winycitychic, I am a visitor

    Winycitychic, I am a visitor from the Uterine page, but all of us "below the belt" cancer stick together.  I am sorry you have been diagnosised with OC but the women here are fabulous and you can ask them anything.

    My two cents:  1.  take a breath.  Wrapping your mind around this is not something like buying a new pair of shoes.  2.  please don't read statistics online.  They are usually OLD numbers and you are a statistic of ONE!! 

    As I said, I know the women will welcome you with open arms and answer all your questions.

  • Windycitychic
    Windycitychic Member Posts: 3
    Ladies, many thanks for your

    Ladies, many thanks for your kind words.  It made my Night. Regarding, the stats you are both right in that the data is 

    probably at least 5 years old.  

     

     

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member

    Ladies, many thanks for your

    Ladies, many thanks for your kind words.  It made my Night. Regarding, the stats you are both right in that the data is 

    probably at least 5 years old.  

     

     

    Hi Windycitychic

    I'm so sorry you had to join our club but we really all understand how you're feeling.  You have every reason to be hopeful about the future.  Sending lots of prayers your way that your chemo kicks your cancer's butt to the curb!

    Warm hugs,

    Kelly

  • pandagypsy
    pandagypsy Member Posts: 113
    welcome

    Foot in Mouth.....to the DISCUSSION BOARD..........not the disease.  Yes, it sucks........a few years ago I finally accepted the fact that I have "chronic cancer".....my notes I wrote to myself at that time of self discovery really showed my surprise! Surprised I was diagnosed stage IV 5 years ago, and the Dr. told me I could be treated, but not cured.  OK, so I took the path of treatment that would give me the best chance of a longer remission..........6 months of nasty chemo, followed by hysterectomy and all that debulking stuff, then 6 more months of chemo.Yell  I didn't have a reoccurance until May of 2014, and it was caught early. After 5 months of chemo I was rescanned and declared NED. BTW, I was 54 when diagnosed, with a history of breast cancer going back to when I was 28.  I look back at it as time spent buying me more time.  It's not easy, you will have some crappy days.......but you have to find your own way to deal with it.....everyone is different...........I choose to make myself #1, and if I didn't feel "sociable", I wasn't. The worst days were spent in a drug induced sleep.  Yeah, easier said than done.  You'll find lots of support here and might even get a few ideas on coping.  I'm sorry you had to join this group, but just know that it is a great place to turn to when no one else is making any sense.  Lots of love out to youLaughing

    Linda

  • pandagypsy
    pandagypsy Member Posts: 113
    ......and............

    .......I am also a nut for "statistics"......I am a numbers geek, must be the accountant in me that won't go away.  I now look at the statistics and laugh, since I haven't fit into any of themCool ...but that doesn't keep me from checking stats.......yes, they don't mean too much...............

  • JoanC
    JoanC Member Posts: 231
    Windycitychick

    I agree with everything that has been said so far by the wonderful ladies here. Stats don't really mean anything since we all are unique.I was diagnosed April 2008 3C and it has not come back since and I am sure there are many more ladies like me out there.....dont give up

  • Glad to be done
    Glad to be done Member Posts: 569
    JoanC said:

    Windycitychick

    I agree with everything that has been said so far by the wonderful ladies here. Stats don't really mean anything since we all are unique.I was diagnosed April 2008 3C and it has not come back since and I am sure there are many more ladies like me out there.....dont give up

    Hi Windycitychick - 
    Dont let

    Hi Windycitychick - 

    Dont let the statistics on line dominate your thoughts.  They are old..  You are young and sounds like you were in good health prior to your diagnosis...  I was 45 years old when I was diagnosed.  I did 6 rounds of IP/IV cisplatian and taxol.  1 round consited of 3 visits to the oncology room.  Day 1 was IV and IP.  Day 2 was fluids and then off till the following monday - day 3 an that was just iv chemo then done for two weeks.  They also ran fluids while I had chemo too...  Drink TONS of water.  You will need it....  I finished chemo in June of 2012 and have been clean since.  2 1/2 years. 

    Which chemo will you be doing? 

  • zenmama
    zenmama Member Posts: 29
    Like Glad to Be Done said, and others above,

    Dear Windy City Chick,

    I was diagnosed 13 yrs ago (Feb 2, 2002) with IIIc.  I was cancer-free for six years before a small recurrence which was quickly dealt with by laporoscopic surgery, without chemo.  I did have another recurrence in 2012, and another end of 2014, but I would describe my quality of life as pretty darn good to excellent in all of this time.  So basically 10 years without having to deal with the whole chemo mess again.  The mental part is hard though somtimes, it is true, but please don't be discouraged.

    Focus on where you want to go and not where you are afraid to go is my best advice.  And the best advice I received was "don't borrow worry".  Easier said than done, I know, but worth aiming for (I work at it). 

    As for statistics - I have never really looked hard at them, and I have never asked.  Who is to say where you will be in that whole continuum?  No doctor and no study can. 

    Concerning supplments, the advice I have read is to make certain your doctor is aware of what you are taking/planning on taking, in case they interfere with your treatment, or magnify any side effects. 

    Now I am off to chemo in an hour (Carbo/Taxol).  No denying it is not fun.  But it could be worse that I know...

  • Mr_Muffins_MOM
    Mr_Muffins_MOM Member Posts: 1
    Diag 14 days ago. 1st Chemo 3 days ago

    Hello,

    So grateful to have this forum, in the short time I've been reading the discussion board, I feel somewhat better already for my Mom. So many questions, I will keep it short and look forward to your response. We have our 1st (we being I'm her son) Chemo education class today. Mom received her 1st Chemo treatment 3 days ago. Anticipating the worst, the side effects from the Carbo/Tax has been very minimal thus far. I read that could change at anytime. But she is feeling better than before so far. I know this so EARLY in diagnosis/treatment. I'm hoping today we will learn what to expect over the next months (or hope fully years). Mom is 73. StageIV Ovarian. Surgery at this time is not an option. She has been drained twice for fluid build-up before 1st chemo visit, seems much more comfortable now. Mom is in good health except for the symptoms we thought were everything but Ovarian, so can I look for her to improve over the next week or so and be able to get around on her own in the home? Right now Mom is treating it as "just a matter of time till" but I want to get her out of the bed and moving around more without being too pushy. Thank you and God Bless.

     

  • bikurgurl
    bikurgurl Member Posts: 8
    Good luck...

    ...I am also recently diagnosed and was *lucky* that I could be surgically cured as mine was detected early and non-aggressive. I am thankful that this support group is here and thankful you found it too.

     

    Blessings!

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    Hi winycity chic!!!im

    Hi winycity chic!!!im guessing you are from Chicago!  Three of my daughters live in chicago!.... As far as supplements talk with your oncologist...some supplements can interfer with chemotherapy making it less affective.  BRCA testing is always good to rule out because there are now some treatments that can benefit BRCA induce cancers such as the parp inhibitors. Unfortunately or fortunately depending on how you look at it ovarian cancer is chronically managed. The goal is to be off chemo as long as possible in a remission state. There is no data to date that keeps you on chdmo without active disease. If you are BRCA 1or 2 there is research that shows a parp inhibitor such as olaparib can help reduce active disease. They do consider that a chemotherapy oral agent. KIm

     

  • kikz
    kikz Member Posts: 1,345 Member
    Welcome

    You will find information and comfort here.  It is frightening but the ladies here have so much knowledge and the biggest hearts.  I feel blessed to have them in my life.  

    Karen

  • cathi0929
    cathi0929 Member Posts: 3
    hanging in there

    I am in remission with Stage 4 ovarian cancer.  I have been cancer free since April 15th of last year.  I'm coming up on my first anniversary and am really scared!!  If all goes well at my next visit at the end of April I will be able to get my power port out but I'm trying not to think about it.   I was able to go back to work part time in Nov. I still have too much time to myself and too much time home alone.... any ideas?

     

  • yamster34
    yamster34 Member Posts: 75

    Diag 14 days ago. 1st Chemo 3 days ago

    Hello,

    So grateful to have this forum, in the short time I've been reading the discussion board, I feel somewhat better already for my Mom. So many questions, I will keep it short and look forward to your response. We have our 1st (we being I'm her son) Chemo education class today. Mom received her 1st Chemo treatment 3 days ago. Anticipating the worst, the side effects from the Carbo/Tax has been very minimal thus far. I read that could change at anytime. But she is feeling better than before so far. I know this so EARLY in diagnosis/treatment. I'm hoping today we will learn what to expect over the next months (or hope fully years). Mom is 73. StageIV Ovarian. Surgery at this time is not an option. She has been drained twice for fluid build-up before 1st chemo visit, seems much more comfortable now. Mom is in good health except for the symptoms we thought were everything but Ovarian, so can I look for her to improve over the next week or so and be able to get around on her own in the home? Right now Mom is treating it as "just a matter of time till" but I want to get her out of the bed and moving around more without being too pushy. Thank you and God Bless.

     

    I could not walk well for

    I could not walk well for awhile because tbe fluid was built up so badly in my stomach that it filled up my leg too.. I got a PluerX catheter to drain the fluid at home. It was really painful for the first 48-72 hours, but since then it has been wonderful. My husband and I can drain the fluid at home. Now my legs are back to the normal size and I can walk comfortably again because we keep the fluid drained regularly. Ask the doctor if PluerX is an option for your mom.