maintenance chemo?

Pamela B
Pamela B Member Posts: 108
in Ovarian Cancer #1

Just when I thought it was over my oncologist is encouraging me to join a clinical trial for a maintenance dose of taxol for one year.  There goes my hair again!  I would get low dose IV taxol once a month, or a new and improved taxol with fewer side effects, or nothing as the control group.  Has anyone heard of this or is on something similar?  I just hate the thought of going back on chemo but since I wasn't able to finish all 6 rounds of IP I thought it might be a good idea.  Your thoughts?

Comments

  • Glad to be done
    Glad to be done Member Posts: 569
    #2
    Hi Pam.  Some docs recommend

    Hi Pam.  Some docs recommend maitnence chemo and some don't.  Mine did not.  Maybe  because I was able to complete all rounds.  I'm not really sure why.  On my 1st day of chemo my ca125 level was already 19 after surgery.  Maybe some of the veterans here can answer why he wants you to.

    I wonder if it will effect your hair since it is given in as low dose.  I know some are on maintenance chemo and it doesn't affect their hair.  Maybe you could go that route.

     

     

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #3
    Maintenance Taxol

    Pamela, I have haerd fo this before.  I don't know, however, what the gains are relative to this treatment.  I would recommend that you talk to your doctor and look at research regarding this approach to see what you stand to gain from it. 

  • wholfmeister
    wholfmeister Member Posts: 315
    #4
    My experience

    This sounds like the research trial that was offered to me at the end of my five rounds of IV/IP.  My GYN-onc said doing maintenance was the best route, but participating in the trial was totally up to me.  I struggled with the decision.  I wanted so badly to participate, for many reasons.  But I just could not bear the thought of risking getting randomized to the "observation only" group.  So, I declined participation.  My GYN-onc was completely supportive and has followed the study protocol, without me being in the study.  Taxol IV and bloodwork and physical exam every 28 days (not all on the same day!).  After IV/IP, this is a piece Of cake.

    My hair wants to grow every month, but then patches will shed after the next dose.  That's OK...I love my wig...and I hate Cancer.

  • Pamela B
    Pamela B Member Posts: 108
    #5
    wholfmeister said:

    My experience

    This sounds like the research trial that was offered to me at the end of my five rounds of IV/IP.  My GYN-onc said doing maintenance was the best route, but participating in the trial was totally up to me.  I struggled with the decision.  I wanted so badly to participate, for many reasons.  But I just could not bear the thought of risking getting randomized to the "observation only" group.  So, I declined participation.  My GYN-onc was completely supportive and has followed the study protocol, without me being in the study.  Taxol IV and bloodwork and physical exam every 28 days (not all on the same day!).  After IV/IP, this is a piece Of cake.

    My hair wants to grow every month, but then patches will shed after the next dose.  That's OK...I love my wig...and I hate Cancer.

    Sounds like the same trial. I

    Sounds like the same trial. I didn't realize I could just get the same maintenance doses from my oncologist. I think screwed up by saying I wold be in the study. With my luck I will get observation. My only hope is that they require 5 rounds of IP chemo and I only had 4.5. Maybe they will reject me and I can ask my oncologist for it. Keep your fingers crossed!

  • wholfmeister
    wholfmeister Member Posts: 315
    #6
    Pamela B said:

    Sounds like the same trial. I

    Sounds like the same trial. I didn't realize I could just get the same maintenance doses from my oncologist. I think screwed up by saying I wold be in the study. With my luck I will get observation. My only hope is that they require 5 rounds of IP chemo and I only had 4.5. Maybe they will reject me and I can ask my oncologist for it. Keep your fingers crossed!

    Randomization

    The study offered to me had 3 arms:  the customary maintenance with IV taxol every 28 days;  the experimental drug IV every month; and a control group that receives all the testing and monitoring, but no drugs.  The experimental drug is ONLY available if you are in the study.  But any doctor can follow the study protocol as far as tests, etc., with Taxol.

    What was right for me may not be right for you.  You have had a rougher time than me with the initial chemo, which was similar treatmentfor the two of us.  Taking no chemo and close monitoring may be right for you, after all you have been through.  

    It was a very hard decision for me, but I am determined not to look back and second guess.  And that's is my advice to you.  Seek information...decide what is right for you...move forward with confidence!

  • MJensen
    MJensen Member Posts: 93
    #7
    study

    Hi Pam,

    My Dr just turned down a clinical trial because he didn't want any of his patients to get a placebo.  He  likes the study and is seeing if he can get his hands on the drug for me under compassionate use.  Then I just got another bowel obstruction and have to have surgery to put a catheter in my stomach for drainage. I can't handle NG tubes.  So this will probably eliminate me from compassionate use but you may ask your Dr about that.  I would think you could change your mind if you want out of the study.  Good luck!!!! Let us know how it works out for you!!!!   Michele

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