parb trial

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kimberly sue 63
kimberly sue 63 Member Posts: 421 Member
in Ovarian Cancer #1

I finished my 1st reoccurence treatment with gemzR and carbo about five weeks ago. My CA125 normalized to 7. This week I started the niraparib/placebo trial. It is of course a double blinded study, so i don't know if I am taking the drug. If anyone has any info to share about the parp inhibitors, I would appreciate it. Kim

 

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  • seatown
    seatown Member Posts: 261 Member
    #2
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    Alexandra knows!

    You no doubt know that Alexandra, a frequent contributor to this forum, has been doing well in a PARP inhibitor trial. If you haven't already, I suggest you look back thru her posts. You'll likely hear from her!

    I hoped earlier this year to get on a PARP inhibitor trial myself but it was not to be. Frown

     

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #3
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    seatown said:

    Alexandra knows!

    You no doubt know that Alexandra, a frequent contributor to this forum, has been doing well in a PARP inhibitor trial. If you haven't already, I suggest you look back thru her posts. You'll likely hear from her!

    I hoped earlier this year to get on a PARP inhibitor trial myself but it was not to be. Frown

     

    Hi Kim

    It's good to hear from you.  I'm so glad that your CA 125 is at 7.  I don't have any personal erience with PARP inhibitors but wish you the best with the trial!

    Warmly,

    Kelly

     

  • Alexandra
    Alexandra Member Posts: 1,308
    #4
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    Hello Kim

    If water starts to taste funny and you have dry mouth, you're taking the PARP inhibitor.

    I have been on Rucaparib open trial since April 2014. My CA125 was gradually going down from 800 to 3, however last month it went up to 10. If it continues going up and CT scan on Wednesday shows progression, I will be booted out of this trial. In any case, I don't regret my decision to opt out of chemo; PARP inhibitor gave me a good 7 months remission with no side effects.

    There are 4 PARP inhibitors under development (Olaparib, Niraparib, Rucaparib and Veraparib), to my knowledge they always work for BRCA+ patients and sometimes for BRCA- too. I met a woman once at my Cancer Center who has been on Olaparib trial for 3 years and still going strong. According to her 30 people started, 3 (incuding her) are still on it after 3 years. It's the luck of the draw.

    Good luck to you with the trial and long remission.

    Hugs,

    Alexandra

  • Hearty Pioneer
    Hearty Pioneer Member Posts: 158
    #5
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    Alexandra said:

    Hello Kim

    If water starts to taste funny and you have dry mouth, you're taking the PARP inhibitor.

    I have been on Rucaparib open trial since April 2014. My CA125 was gradually going down from 800 to 3, however last month it went up to 10. If it continues going up and CT scan on Wednesday shows progression, I will be booted out of this trial. In any case, I don't regret my decision to opt out of chemo; PARP inhibitor gave me a good 7 months remission with no side effects.

    There are 4 PARP inhibitors under development (Olaparib, Niraparib, Rucaparib and Veraparib), to my knowledge they always work for BRCA+ patients and sometimes for BRCA- too. I met a woman once at my Cancer Center who has been on Olaparib trial for 3 years and still going strong. According to her 30 people started, 3 (incuding her) are still on it after 3 years. It's the luck of the draw.

    Good luck to you with the trial and long remission.

    Hugs,

    Alexandra

    CA125 scan

    Hope your CT scan shows no progression and the CA125 numbers reduce. Glad you have had 7 months of success.

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #6
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    Hearty Pioneer said:

    CA125 scan

    Hope your CT scan shows no progression and the CA125 numbers reduce. Glad you have had 7 months of success.

    No info

    about trial but wishing you back to a good long remission....praying CT scan is good...stay strong    val

     

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #7
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    Alexandra said:

    Hello Kim

    If water starts to taste funny and you have dry mouth, you're taking the PARP inhibitor.

    I have been on Rucaparib open trial since April 2014. My CA125 was gradually going down from 800 to 3, however last month it went up to 10. If it continues going up and CT scan on Wednesday shows progression, I will be booted out of this trial. In any case, I don't regret my decision to opt out of chemo; PARP inhibitor gave me a good 7 months remission with no side effects.

    There are 4 PARP inhibitors under development (Olaparib, Niraparib, Rucaparib and Veraparib), to my knowledge they always work for BRCA+ patients and sometimes for BRCA- too. I met a woman once at my Cancer Center who has been on Olaparib trial for 3 years and still going strong. According to her 30 people started, 3 (incuding her) are still on it after 3 years. It's the luck of the draw.

    Good luck to you with the trial and long remission.

    Hugs,

    Alexandra

    No dry mouth...water smells

    No dry mouth...water smells funny, intermittent nausea, some body aches. But last chemo was only five weeks ago.   We will see. Get a blood count tomorrow. Did you have any problems with anemia or thrombocytopenia? Kim

     

  • Alexandra
    Alexandra Member Posts: 1,308
    #8
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    kimberly sue 63 said:

    No dry mouth...water smells

    No dry mouth...water smells funny, intermittent nausea, some body aches. But last chemo was only five weeks ago.   We will see. Get a blood count tomorrow. Did you have any problems with anemia or thrombocytopenia? Kim

     

    Side effects

    I had absolutely no nausea, no GI issues or anything else, exept dry mouth and some taste change. Blood counts were always normal. I was told that PARP inhibitors could raise liver enzymes (ALT, AST), but I didn't have this problem either.

    Stay away from grapefruits, blood oranges, starfruit, pomegranate and their juices.

  • khsherwood
    khsherwood Member Posts: 33 Member
    #9
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    Part inhibitor

    i am going to start chemo soon. After I finish my eighteen weeks of chemo my doctor says he will try to get me into the part inhibitor trial. He says the results so far are very good but even  better if you are in the right gene group. I will also be tested for genetic mutations to see if I will be a good candidate. Good luck with the trial and keep us updated on how you are doing. Kelly

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #10
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    khsherwood said:

    Part inhibitor

    i am going to start chemo soon. After I finish my eighteen weeks of chemo my doctor says he will try to get me into the part inhibitor trial. He says the results so far are very good but even  better if you are in the right gene group. I will also be tested for genetic mutations to see if I will be a good candidate. Good luck with the trial and keep us updated on how you are doing. Kelly

    update

    I have been on my parp hibitor/placebo 3.5 weeks now. I have seen my platelet count go from 230 to 149 and this week 131. There is no reason to see my platlets trending down other than that I am on the drug. I feel good and continue to be worki

    ng full time and an active life. Occasional nausea and body aches but nothing too alarming. Here is hoping I'm on the parp drug and having good results!!!! Kim

  • Alexandra
    Alexandra Member Posts: 1,308
    #11
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    kimberly sue 63 said:

    update

    I have been on my parp hibitor/placebo 3.5 weeks now. I have seen my platelet count go from 230 to 149 and this week 131. There is no reason to see my platlets trending down other than that I am on the drug. I feel good and continue to be worki

    ng full time and an active life. Occasional nausea and body aches but nothing too alarming. Here is hoping I'm on the parp drug and having good results!!!! Kim

    I am glad that PARP is working for you Kim

    After 7.5 months on the trial my PARP got lazy and is no longer doing its job. CT scan is still clear and I have no symptoms, but CA125 went up (was 52 yesterday). They will keep me on the trial until CT scan shows at least 20% growth, which I estimate will happen in about 3-4 months. I am looking into other trials, but there's really nothing as easy as PARP out there. Most of the trials are geared towards platinum-resistant cancer; mine is still considered platinum-sensitive. Oh well, if everything else fails there is always the good ol' carbo / taxol cocktail and my vast collection of wigs.

    Best wishes and hugs,

    Alexandra

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #12
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    Alexandra said:

    I am glad that PARP is working for you Kim

    After 7.5 months on the trial my PARP got lazy and is no longer doing its job. CT scan is still clear and I have no symptoms, but CA125 went up (was 52 yesterday). They will keep me on the trial until CT scan shows at least 20% growth, which I estimate will happen in about 3-4 months. I am looking into other trials, but there's really nothing as easy as PARP out there. Most of the trials are geared towards platinum-resistant cancer; mine is still considered platinum-sensitive. Oh well, if everything else fails there is always the good ol' carbo / taxol cocktail and my vast collection of wigs.

    Best wishes and hugs,

    Alexandra

    I'm sorry to hear that....but

    I'm sorry to hear that....but maybe the growth will be slower since you are still on the parb. There is still so much we don't know about what the parb can do. Are you BRCA positive??  Kim

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