checking in

kayandok
kayandok Member Posts: 1,202 Member
in Ovarian Cancer #1
Hi ladies, just a quick update. I have been wating for AWESOME news from my doctor before checking in, but since that does't seem to be coming my way, I will check in with JUST OK news.

I had my 3rd debulk surgery in August and have been on carbo/gem since then. CA125 is high (averaging at 400) for a few months, but seems to be keeping itself at bay. I feel pretty good, except for the few days after chemo, and then bowels are always a challenge for a good 3 weeks, then I start the process all over again, you all know the story. Neuropathy has not been getting better, but not worse. So, I guess I am in holding stage right now.

The GOOD news is that I have no pain, no neuropathy in my hands or ears (that was a problem on cisplatin and taxol), my eyes have not gotten worse (just had an eye exam and didn't need to get a new prescript!), I sleep like a baby, have a great appetite (most of the time), the stent is still working and so kidneys still work like a charm (other than the occasional UTI that comes with stents), only 3 very minor partial bowel obstructions that resolved in a day (hurt like hell, though!) most likelly from adhesions (all after I ate beef - needless to say I am avoiding beef right now :(.

I hate to think too far ahead, because I definitely will become depressed. I seem to have avoided that scenario so far. I don't even know how, other than applying strong denial techniques and keeping really busy. I know my faith in a loving God does play a big role, along with my awesome family and friends supporting me.

I marvel even more now, at all the women who have gone on to receive their wings and how they were able to contnually post and reach out and help in spite of their failing health. I love this board, and have been very active in the past, but am finding it harder to check in as often. I apologize and hope you all understand. I am online a lot, have FB and welcome PM's anytime if there is anything I could be of help with.

Meanwhile, I am enjoying life and cultivating seeds of JOY. I am also looking forward to celebrating 5 years of survival in JUNE.

Many blessing and hugs all around to my dear sisters,
kathleen

dx ovca 3C 6-07
too many surgeries
truck loads of chemo

Comments

  • JoanC
    JoanC Member Posts: 231 Member
    #2
    Glad you checked in
    Kathleen,
    So glad you checked in.....I was just thinking of you the other day.
    How are you going to celebrate 5 yrs.? I think it is so wonderful. Your attitude and messages
    are always so upbeat.
    Hugs

    dx ovca 3c 4-08
  • Susan53
    Susan53 Member Posts: 178
    #3
    So glad
    So glad that you checked in Kathleen. I know how hard it is to come in here and talk about the bad of anything. We would all rather be here to talk of all the good and the blessings that God has given us. Thanks so much for your post. Sharon
  • clamryn
    clamryn Member Posts: 508
    #4
    Hi Kathleen
    Hi Kathleen, So glad to hear from you. I keep up with you on facebook. I had to laugh when you said, you get the chemo and then you are down for a couple of days and then the "bowels are a challenge". Isn't that the truth. I feel like I have to make sure my bowels are fed properly, cleaned properly, etc... so that I can function...LOL And then when I get it all straighted out.... we start all over again. It is a never ending battle.

    You are on my prayer list.... Always praying for all of us that we have no pain. It is so good to hear that you are sleeping well and eating good. That means a lot. I am like you, trying not to think too far ahead. That ole depression can set in real fast. My recipe for depression is always my grandchildren. They are the best dose of medicine I have.

    Congratulations on the 5 year mark. I wished that I could fly to Japan and celebrate with you. Whoo...hooo.

    Sending you a BIG, HUGE HUG across the miles.
    Linda
  • garden gal
    garden gal Member Posts: 212 Member
    #5
    clamryn said:

    Hi Kathleen
    Hi Kathleen, So glad to hear from you. I keep up with you on facebook. I had to laugh when you said, you get the chemo and then you are down for a couple of days and then the "bowels are a challenge". Isn't that the truth. I feel like I have to make sure my bowels are fed properly, cleaned properly, etc... so that I can function...LOL And then when I get it all straighted out.... we start all over again. It is a never ending battle.

    You are on my prayer list.... Always praying for all of us that we have no pain. It is so good to hear that you are sleeping well and eating good. That means a lot. I am like you, trying not to think too far ahead. That ole depression can set in real fast. My recipe for depression is always my grandchildren. They are the best dose of medicine I have.

    Congratulations on the 5 year mark. I wished that I could fly to Japan and celebrate with you. Whoo...hooo.

    Sending you a BIG, HUGE HUG across the miles.
    Linda

    Congradulations on 5 years
    You truly have been through a lot. Hope you have some good news soon. I was dx june of 09 and only have had a 8 month break so far. on going chemo for 18 months now. reading your story has me hoping I too can have a year or two more. Good luck, will be thinking about you and praying Kathy
  • TexanByChoice
    TexanByChoice Member Posts: 44
    #6
    Happiness --- 5 years and counting
    Hoping that you will get excellent news shortly. You've been and continue to be so brave and an inspiration to all of us. It's nice to know we are not alone on this journey... family, c-sisters, and mostly an awesome God. Keep the faith and courage as you battle through the tough times, and know that we are all behind you. 5 years survival -- oh goody. I pray that you have many more to come and we'll rejoice when you announce your 10th.

    Shirley
    TexanByChoice
    dx ovc 3C 8/19/2009
    pogressing one day at a time
  • mopar
    mopar Member Posts: 1,972 Member
    #7
    GOOD TO HEAR FROM YOU, KATHLEEN!
    How wonderful that we can all keep in touch no matter how many miles separate us.

    And I'm especially happy to hear that you're moving forward with zest and joy! I'm with you - having a wonderful relationship with the Lord is paramount to everything!

    Sending hugs and prayers!

    Monika
  • srwruns
    srwruns Member Posts: 343
    #8
    great to hear your news.
    great to hear your news. Boy, your tag lines says it all...brave woman.
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #9
    Always happy to see your posts !
    Sorry your news is not awesome but ok news is good to hear. Glad your side effects are not as bothersome as before but oh those bowels they are a challenge aren't they? First I need mirilax to keep them moving then watch out I'm afraid to leave the house,oh the indignity !
    Colleen
  • kikz
    kikz Member Posts: 1,345 Member
    #10
    Cafewoman53 said:

    Always happy to see your posts !
    Sorry your news is not awesome but ok news is good to hear. Glad your side effects are not as bothersome as before but oh those bowels they are a challenge aren't they? First I need mirilax to keep them moving then watch out I'm afraid to leave the house,oh the indignity !
    Colleen

    Kathleen I am sending good thoughts
    and prayers your way. You reached out to me in a PM once when I was at my wits end. I am sending good vibes across the Pacific.

    Karen
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #11
    kikz said:

    Kathleen I am sending good thoughts
    and prayers your way. You reached out to me in a PM once when I was at my wits end. I am sending good vibes across the Pacific.

    Karen

    Congratulations on your five years, Kathleen!
    Wishing you many, many more!

    Kelly
  • Mwee
    Mwee Member Posts: 1,338
    #12
    5 years and looking marvelous!
    You cultivated joy in my direction this morning! I'm so happy to see you doing so well.
    for me it's : dx ovca 3C 5-06
    3 years remission
    truck loads of chemo

    ((((HUGS)))) Maria
  • vj1
    vj1 Member Posts: 150
    #13
    Mwee said:

    5 years and looking marvelous!
    You cultivated joy in my direction this morning! I'm so happy to see you doing so well.
    for me it's : dx ovca 3C 5-06
    3 years remission
    truck loads of chemo

    ((((HUGS)))) Maria

    Inspiration
    Kathleen, so good to see your post. I have not been posting, but reading the board. I returned to chemo in May and am now with NED again. Every day is a blessed day. Your attitude is most inspiring. We all need to follow your example. June is right around the corner and I feel sure you will go well beyond that; keeping you in my prayers. Keep up the good work; we need you! Here's a Fla and Pa hug coming your way

    Verna
  • vj1
    vj1 Member Posts: 150
    #14
    Mwee said:

    5 years and looking marvelous!
    You cultivated joy in my direction this morning! I'm so happy to see you doing so well.
    for me it's : dx ovca 3C 5-06
    3 years remission
    truck loads of chemo

    ((((HUGS)))) Maria

    Chemo question
    I have seen several of you mention that you have had or having extended chemos. I have had 2 separate 6 month chemos in the past 3 years (this May) since my dx---3C. What is the reason for longer periods. I see some of you have had 18-24 months. Just collecting info

    Verna
  • kikz
    kikz Member Posts: 1,345 Member
    #15
    vj1 said:

    Chemo question
    I have seen several of you mention that you have had or having extended chemos. I have had 2 separate 6 month chemos in the past 3 years (this May) since my dx---3C. What is the reason for longer periods. I see some of you have had 18-24 months. Just collecting info

    Verna

    Verna
    I love your attitude and it is also the way I choose to live my life. It's the only way I know the beast is not winning.

    Karen
  • kayandok
    kayandok Member Posts: 1,202 Member
    #16
    vj1 said:

    Chemo question
    I have seen several of you mention that you have had or having extended chemos. I have had 2 separate 6 month chemos in the past 3 years (this May) since my dx---3C. What is the reason for longer periods. I see some of you have had 18-24 months. Just collecting info

    Verna

    Verna,
    did your numbers come down to normal after your 6 month chemo treatment? Mine did after my first carbo/taxol, but NED only stayed with me for 8 months or so. At that time, I went back into treatment.

    Every time I have had chemo, my numbers have come down, and sometimes even to the normal range, but I never achieved NED again (proven by low numbers, a clean scan, and no symptoms). So, for me I do chemo (sometimes with surgery first) until my numbers are either low enough to take a break, or no break and switch to another chemo. Balancing chemo with reactions, stamina and how long one has had chemo is a real Science. There is no formula, really. I am blessed to have a good strong body that seems to tolerate surgery and chemo pretty well, but there are limits to how far you can push even a healthy work horse.

    A few gals have had maintenance chemo, which is 12 to 18 months of chemo in spite of having an NED status. Carlene has had good success with this, and fortunate not to have had many side effects.

    Does that answer your question or only confuse you all the more? It is late here, and I think I better sign off, as my brain is not functioning so well.

    Hugs,
    kathleen
  • Mwee
    Mwee Member Posts: 1,338
    #17
    vj1 said:

    Chemo question
    I have seen several of you mention that you have had or having extended chemos. I have had 2 separate 6 month chemos in the past 3 years (this May) since my dx---3C. What is the reason for longer periods. I see some of you have had 18-24 months. Just collecting info

    Verna

    Hi Verna
    I'm one of those loooong term chemoers ( is that a word?) :) I have to do it because it keeps me stable, but I haven't reached CA-125s into the normal range as yet, but I'm still hoping.
    (((HUGS))) Maria

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