Maintenance chemo...?

queenieb52
queenieb52 Member Posts: 48 Member
edited March 2014 in Ovarian Cancer #1
Morning! I haven't been on here in awhile...can't remember the last post I did. I think I was going thru a kind of depression (imagine!) with all this...but anyways! I was dx last May with stage 3 ovarian, had a complete hysterectomy on June 12th, went thru 6 Taxol IV/Cisplatin IP, then had 3 rounds of Gemzar/Cisplatin, had a 2nd look surgery in Feb, when my Dr took out the port. he biopsied lymph nodes, surrounding organs and all looked good. I still had some fluid & thickening in my abdomen, so he wanted me to have 3 more rounds of the Gemzar. My CA-125 had been 1000 when first dx- came down to the 60's by Dec. and was 22 in Feb. I finished my last chemo may 13th & had my scans. Everything looked NORMAL...Thank God, and no thickening...CA125 was 17. All in all, I have tolerated everything well. But he feels that because it took my CA125 so long to come down, he's not comfortable in just 'stopping'. And to be fair...he did tell me at the get-go that Ovarian cancer often needs to be 'managed'-like Diabetes. So I will have the Gemzar again...6 weeks apart, and after 3 rounds another scan. If all is still good, then we will continue but at 8-10 weeks apart. Has anyone else done this...? Is this the norm (HA! what is normal anyways!!)He is a GREAT Dr.-very highly regarded here in South Florida & I really love him. I am already having issues with all these errant thoughts & feelings...waiting for the other shoe to drop-so to speak. Trying to regain some 'normalcy' to my life. this just kind of adds to the anxiety. I would appreciate anyones thoughts or experience on this! Thanks & wellness to everyone! ;=) Beth

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #2
    Beth....I am doing a year of
    Beth....I am doing a year of maintenance chemo, but it's Taxol instead of Gemzar. All the doctors seem to have a slightly different take on the whole issue. My doctor does not do second look surgeries, for instance, and many doctors do not recommend maintenance chemo. My doctor says he has had better results with it than what the study showed, and points out (correctly) that the study was (a) small and (b) never completed. But he left it totally up to me. I was NED - clear CT scan and CA 125 of 6. But I opted for the year of monthly Taxol, which I am tolerating very well. I figured that if I didn't take advantage of it, and I had a recurrence early-on, I would be kicking myself forever after.

    Carlene
  • queenieb52
    queenieb52 Member Posts: 48 Member
    #3
    Hissy_Fitz said:

    Beth....I am doing a year of
    Beth....I am doing a year of maintenance chemo, but it's Taxol instead of Gemzar. All the doctors seem to have a slightly different take on the whole issue. My doctor does not do second look surgeries, for instance, and many doctors do not recommend maintenance chemo. My doctor says he has had better results with it than what the study showed, and points out (correctly) that the study was (a) small and (b) never completed. But he left it totally up to me. I was NED - clear CT scan and CA 125 of 6. But I opted for the year of monthly Taxol, which I am tolerating very well. I figured that if I didn't take advantage of it, and I had a recurrence early-on, I would be kicking myself forever after.

    Carlene

    Thanks for your input
    Thanks Carlene for your insight. My Dr. did give me options...he recommend the maintenance chemo or that I could take Tamoxifen. But there are also side effects from the Tamoxifen...such as blood clots, high blood press.amongst others & I opted not to trade off on more health issues. Because other than the cancer- I was relatively healthy! (I know that sounds weird...but thats what it is! ) Thanks tho Carlene for responding...so much of this is like looking for a needle in a haystack! Just helps to know others know what I'm talking about! Hope that all stays good with you...enjoy your days! Beth
  • kikz
    kikz Member Posts: 1,345 Member
    #4
    Hi queenieb52
    I am having surgery on 6/21 after three rounds of chemo. I had a pre-op appointment yesterday and found my CA 125 had doubled from 850 to 1500 during my lasat round of chemo. That along with bloated feeling I've had since Sunday has me scared. I had been feeling so good the last few weeks. I thought I could be hopeful at least through surgery and three rounds of post-surgery chemo. Now I am feeling unsure about everything. I am experiencing my first real anger. I usually have trouble getting to anger. But with what I have gone through so far and what I read about all you ladies I feel mad. I know that doesn't help matters but geez how can a person remain upbeat with the constant barrage of bad news or uncertainty we face each day?

    I don't want to spend whatever time I have left on this earth feeling down and I usually am not. I have surprised myself with my ability to cope. I guess I am having a bad day and it is overcast which is not the norm on a June day in California. I don't want my life to be about cancer and I don't want that to be the only subject I discuss with the people who call or visit me. Thanks to facebook I am having lunch today with a junior high friend I have not seen in 47 years. (yeah I'm old!) I hope that will lift my spirits.

    It helps to vent here because I cannot vent to my 86-year old mother or my son. It is too much for them. They can't stand to see me ill let alone hear about how crappy I feel sometimes.

    Thank you kind hearts for hearing me out. I feel better, I hope I didn't ruin your day.

    Luv, Karen
  • msfanciful
    msfanciful Member Posts: 559
    #5
    Hi Beth,

    I just finished my 12th weekly maintenance chemo of taxol. (A total of 3 months) I actually finished it today and none too soon. I developed the black vertical stripes down the middle of my fingernails, 2-weeks ago I began experiencing the numbness of the hands, feet, arms.

    I have been actually in remission for 1 month but, she believes in treating my cancer agressively.( I know that's why I'm still here).
    My ca-125 number was 3 a month ago and still a 3 as of today. She actually was very happy with the reduction of my lymph-nodes back to a normal size and said I could do my last (12th) treatment today or not. I chose to go the extra mile. Who knows maybe 12 is a lucky number?

    I think I can live with treating my cancer as a chronic illness rather than a death sentence.

    I've just had to make some adjustments, but at lease one can still have a life.

    Good luck on making that decision.

    Sharon

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