PARP as a maintenance drug?

Rph45
Rph45 Member Posts: 5 Member
in Ovarian Cancer #1
I am currently on a PARP trial after being declared platinum resistant after my first round of IV chemo. I have been on this trial for a little over a year. My doctor has been watching a tiny spot on my CAT scan that has remained unchanged all this time. I finally talked my doctor into a PET scan and the scan came back negative - no sign of cancer! My dilemma is how long do I stay on the PARP? My doctor said that it is possible that the drug could offer a protective factor but nobody really knows since it is a clinical trial. I can possibly get another 12 treatments on the trial but am ready for a break and to feel "normal" again. If I knew that the drug was keeping the cancer away it would be a no-brainer. I would stay on the trial. I obviously want to do whatever it takes to keep this cancer from coming back anytime soon but at what point do I say enough is enough? Has anyone else had a similar situation with a PARP trial? I would be very interested on any information of whether this drug offers any type of protective factor.
Thanks for any input and as always I am praying for you all,
Lynn

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #2
    Lynn...
    I have never had a
    Lynn...

    I have never had a PARP drug, but I did do a year of Taxol maintenance. I pleaded with my doctor to let me continue for another year. No go. Six months, then? Nope. He said the toxicity outweighs any possible (and unproven) benefit, event though I tolerated it extremely well. So I looked for a clinical trial that would take me, and I found one.

    If I were you, I would do the additional year of maintenance. But it's entirely up to you. If you are truly yearning for a "normal" life, and being out of treatment would not make you crazy with anxiety, then maybe that's what you should do.

    There is no right or wrong decision here. I too wish I had a crystal ball sometimes.

    Best of luck, no matter which path you take.

    Carlene
  • Rph45
    Rph45 Member Posts: 5 Member
    #3
    Hissy_Fitz said:

    Lynn...
    I have never had a
    Lynn...

    I have never had a PARP drug, but I did do a year of Taxol maintenance. I pleaded with my doctor to let me continue for another year. No go. Six months, then? Nope. He said the toxicity outweighs any possible (and unproven) benefit, event though I tolerated it extremely well. So I looked for a clinical trial that would take me, and I found one.

    If I were you, I would do the additional year of maintenance. But it's entirely up to you. If you are truly yearning for a "normal" life, and being out of treatment would not make you crazy with anxiety, then maybe that's what you should do.

    There is no right or wrong decision here. I too wish I had a crystal ball sometimes.

    Best of luck, no matter which path you take.

    Carlene

    Thanks
    Thanks Carlene. That is pretty much where I am right now. I am not ready to give it up yet but still have to wonder if it is providing me any benefit. It is always nice to have advice from others who are going through the same thing.

    Good luck to you, too.
    Lynn
  • lp06865
    lp06865 Member Posts: 1
    #4
    parp as a maintenance drug
    I turned down a parp trial and three years later have been receiving carboplatin/taxol each year my cancer comes back. This third time I was a lot more nausous than usaual. I have never thrown up but many do. I am a very athletic person, climbed Denali, rock climb, bike, run, lift weights, ect. I have not been doing much exercise the last 3 months as I am just finishing chemo. How sick and nauseated do you get? How fatigued? Do you still work or do house work, shop, ect? I have heard that parps are easier then your typical chemo. My sister took chemo 9 times in 5 years and is currently in the hospital dying of ovarian cancer (Braca 1). Write a pro and cons list. I am trying to get into a parp inhibitor trial when my cancer comes back.
    lp
  • carolenk
    carolenk Member Posts: 907 Member
    #5
    lp06865 said:

    parp as a maintenance drug
    I turned down a parp trial and three years later have been receiving carboplatin/taxol each year my cancer comes back. This third time I was a lot more nausous than usaual. I have never thrown up but many do. I am a very athletic person, climbed Denali, rock climb, bike, run, lift weights, ect. I have not been doing much exercise the last 3 months as I am just finishing chemo. How sick and nauseated do you get? How fatigued? Do you still work or do house work, shop, ect? I have heard that parps are easier then your typical chemo. My sister took chemo 9 times in 5 years and is currently in the hospital dying of ovarian cancer (Braca 1). Write a pro and cons list. I am trying to get into a parp inhibitor trial when my cancer comes back.
    lp

    The PARP inhibitor is only for those who have the BRACA mutations. I don't even know where I stand with the genetic mutations as I was discouraged from being tested.

    Maybe EVERYONE should be tested for genetic mutations not just those who have the strong family history of breast/ovarian cancer--especially since there are these new treatments showing promise for some of us.

    The PARP inhibitor doesn't seem to affect the healthy cells much but still carries its own side effects--fatigue in particular.

    Carolen
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #6
    carolenk said:

    The PARP inhibitor is only for those who have the BRACA mutations. I don't even know where I stand with the genetic mutations as I was discouraged from being tested.

    Maybe EVERYONE should be tested for genetic mutations not just those who have the strong family history of breast/ovarian cancer--especially since there are these new treatments showing promise for some of us.

    The PARP inhibitor doesn't seem to affect the healthy cells much but still carries its own side effects--fatigue in particular.

    Carolen

    Genetic testing
    Carolen,
    Why were you discouraged from being tested?
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #7
    carolenk said:

    The PARP inhibitor is only for those who have the BRACA mutations. I don't even know where I stand with the genetic mutations as I was discouraged from being tested.

    Maybe EVERYONE should be tested for genetic mutations not just those who have the strong family history of breast/ovarian cancer--especially since there are these new treatments showing promise for some of us.

    The PARP inhibitor doesn't seem to affect the healthy cells much but still carries its own side effects--fatigue in particular.

    Carolen

    I think they will test just
    I think they will test just about anyone who wants it, just as they will with the colon cancer/OVCA link (forgot the name of that one). The big difference is whether or not insurance will pay for it.

    My insurance paid for BRCA testing, but refused my request for the other one, so I did not have that one done. The tests are quite expensive.

    Carlene
  • carolenk
    carolenk Member Posts: 907 Member
    #8
    Tethys41 said:

    Genetic testing
    Carolen,
    Why were you discouraged from being tested?

    Genetic testing
    Re: genetic testing

    The oncologist said that I didn't need to have genetic testing because I have no family history of ovarian, breast or colon cancers. I think I will have another conversation about the subject.

    Carolen
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #9
    carolenk said:

    Genetic testing
    Re: genetic testing

    The oncologist said that I didn't need to have genetic testing because I have no family history of ovarian, breast or colon cancers. I think I will have another conversation about the subject.

    Carolen

    Insurance
    Yeah, that sounds like a doctor trying to keep insurance costs down. I would want the testing anyway.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #10
    Hissy_Fitz said:

    I think they will test just
    I think they will test just about anyone who wants it, just as they will with the colon cancer/OVCA link (forgot the name of that one). The big difference is whether or not insurance will pay for it.

    My insurance paid for BRCA testing, but refused my request for the other one, so I did not have that one done. The tests are quite expensive.

    Carlene

    Carlene: Lynch Factor?
    The genetic link netween colon & OVA or uterine cancer: were you thinking of Lynch Factor? There's another name for it, too, that I can't remember.
  • Rph45
    Rph45 Member Posts: 5 Member
    #11
    lp06865 said:

    parp as a maintenance drug
    I turned down a parp trial and three years later have been receiving carboplatin/taxol each year my cancer comes back. This third time I was a lot more nausous than usaual. I have never thrown up but many do. I am a very athletic person, climbed Denali, rock climb, bike, run, lift weights, ect. I have not been doing much exercise the last 3 months as I am just finishing chemo. How sick and nauseated do you get? How fatigued? Do you still work or do house work, shop, ect? I have heard that parps are easier then your typical chemo. My sister took chemo 9 times in 5 years and is currently in the hospital dying of ovarian cancer (Braca 1). Write a pro and cons list. I am trying to get into a parp inhibitor trial when my cancer comes back.
    lp

    parp as a maintenance drug
    Hi lp. Sorry that you have had such a tough time with your chemo. The Parp trial that I am on has minimal side effects. The trial I am on actually combines the Parp with another drug called temzolamide. The temazolamide causes me nausea but not the Parp. I mostly have no energy while on the trial but feel completely normal as soon as I finish treatment. I take it for 1 week about every 5 weeks. I am a pharmacist and work full time. I do have to take the week off when I am on the chemo, but feel perfectly fine the other 4 weeks. I still exercise, run errands and yes, clean the house!! The nausea during chemo week is not horrible but it is there. Zofran helps. I would definitely recommend trying to get in a trial. I did go through genetic testing and was Braca 2. I don't think the particular study I am in limits the trial to Brca positive. Good luck to you and I will pray for your sister.
    Lynn

    The only other problem is that it does cause by platelets to drop pretty low which is why I am on a 5 week instead of 4 week schedule. And also my white count has dropped which has led to some Neulasta shots.....side effects worse than chemo. I have now decided to stop Neulasta and see what happens this month.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #12
    Rph45 said:

    parp as a maintenance drug
    Hi lp. Sorry that you have had such a tough time with your chemo. The Parp trial that I am on has minimal side effects. The trial I am on actually combines the Parp with another drug called temzolamide. The temazolamide causes me nausea but not the Parp. I mostly have no energy while on the trial but feel completely normal as soon as I finish treatment. I take it for 1 week about every 5 weeks. I am a pharmacist and work full time. I do have to take the week off when I am on the chemo, but feel perfectly fine the other 4 weeks. I still exercise, run errands and yes, clean the house!! The nausea during chemo week is not horrible but it is there. Zofran helps. I would definitely recommend trying to get in a trial. I did go through genetic testing and was Braca 2. I don't think the particular study I am in limits the trial to Brca positive. Good luck to you and I will pray for your sister.
    Lynn

    The only other problem is that it does cause by platelets to drop pretty low which is why I am on a 5 week instead of 4 week schedule. And also my white count has dropped which has led to some Neulasta shots.....side effects worse than chemo. I have now decided to stop Neulasta and see what happens this month.

    Platelets
    I have heard that eating two tablespoons of tahini each day will keep your platelet count up, or bring it up quickly if it is down.

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