removed from clinical trial part II

Linn1
Linn1 Member Posts: 47
edited March 2014 in Ovarian Cancer #1
Hi-
As of yesterday my counts met the criteria so I received chemo but the research team suggested I start shopping around for another PARP Inhibitor trial as I will most likely not remain on this trial very much longer. My oncologist asked the drug company to dose reduce the chemo but they said "no". It went against the protocol. For now, I have the luxury of a few weeks maybe a little longer if I can make one more round of chemo at the end of the month. My medical team thought it would be a good idea to start doing my research and know about any other possible trials.

Lisa if you are at Mayo tomorrow, would you ask if they are sponsoring any PARP Inhibitor trials, and if so, who is the contact rep for clinical trials?
Thanks so much.
Lynn

Comments

  • Lisa13Q
    Lisa13Q Member Posts: 677
    #2
    YES
    Linn,

    I will be returning late in the afternoon and will give you a response. I promise!!
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #3
    Parp at mayo
    I just wanted to let you know that mayo is doing the parp inhibitor along with topotecan. Just google parp trial at mayo and you well get the number to call and talk to them. My Dr recommended this to me also. I have the number somewhere but haven't called yet. The trial is phase I and is open to applicants, it looks like the only qualifier is to have the brca mutate. Good luck in your search. Hugs Bonnie
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #4
    Doctor' Name that was recommended at Mayo
    Lynn,

    I spoke to my doctor today about your situation. She told me that there is a Dr. Brigitte Barrette at Mayo-Rochester, who she called a "bulldog" with chemo. She said that Dr. Barrette creates individual protocols for each patient and she's most impressed with her ability to look up new treatments and access numerous treatments when so many docs have their certain favorite drugs. She was quite encouraging and said there are so many new protocols and many other effective drugs for BRCA OVCA other than PARP inhibitors. Her other recommendation was a Dr. Haluska. She said he was newer but she expected great things from him. Appointment number for Medical Oncology 507-284-8815. It cannot hurt to call....Hope this is helpful..and encourging.....Lisa
  • Linn1
    Linn1 Member Posts: 47
    #5
    Lisa13Q said:

    Doctor' Name that was recommended at Mayo
    Lynn,

    I spoke to my doctor today about your situation. She told me that there is a Dr. Brigitte Barrette at Mayo-Rochester, who she called a "bulldog" with chemo. She said that Dr. Barrette creates individual protocols for each patient and she's most impressed with her ability to look up new treatments and access numerous treatments when so many docs have their certain favorite drugs. She was quite encouraging and said there are so many new protocols and many other effective drugs for BRCA OVCA other than PARP inhibitors. Her other recommendation was a Dr. Haluska. She said he was newer but she expected great things from him. Appointment number for Medical Oncology 507-284-8815. It cannot hurt to call....Hope this is helpful..and encourging.....Lisa

    thanks
    Hi Lisa-
    Thanks so much for taking the time to speak with your doc. I am officially starting my "homework" of research and calling hospitals Monday. I'll see if Dr. Barrette is open to giving a second opinion. Mayo and Dana Farber are my first places to try along with Northwestern in Chgo. I jut need to mentally gear up to start looking all over again. For tonight I am going to attend a holiday concert at my church and try to put it in the back of my mind for a little while. Thank you again. I'll keep you posted and look to continue to read about you and your mom.
    Take care.
    Lynn
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #6
    Linn1 said:

    thanks
    Hi Lisa-
    Thanks so much for taking the time to speak with your doc. I am officially starting my "homework" of research and calling hospitals Monday. I'll see if Dr. Barrette is open to giving a second opinion. Mayo and Dana Farber are my first places to try along with Northwestern in Chgo. I jut need to mentally gear up to start looking all over again. For tonight I am going to attend a holiday concert at my church and try to put it in the back of my mind for a little while. Thank you again. I'll keep you posted and look to continue to read about you and your mom.
    Take care.
    Lynn

    You are Welcome
    You can say, when you call, that you got her name from a patient of Dr. Bobbie Gostout. Don't know if that will help, but Dr. Gostout is head of Gyn/onc at Mayo...so would guess the name has some influence... That's who she recommended...highly. Good luck. let me know what happens.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #7
    Lisa13Q said:

    You are Welcome
    You can say, when you call, that you got her name from a patient of Dr. Bobbie Gostout. Don't know if that will help, but Dr. Gostout is head of Gyn/onc at Mayo...so would guess the name has some influence... That's who she recommended...highly. Good luck. let me know what happens.

    When you participate in a trial far away from home...
    Do you have to travel often to a distant location when you are in a clinical trial far away? Or can your local oncologist do the special labs, etc. that the trial may call for and send them there?

    Now that my rare Grade 3 uterine cancer has recurred, my oncologist will mirror treatment options used for Ovarian Serous cancers to try and work me back into short remissions between treatments. I better start understanding the process! YOU look for the trials and try to get enrolled PERSONALLY? I guess I thought your oncologist looked for applicable trials for you. I know my oncologist said there were no current open trials for my cancer (UPSC) at this time.
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #8
    lindaprocopio said:

    When you participate in a trial far away from home...
    Do you have to travel often to a distant location when you are in a clinical trial far away? Or can your local oncologist do the special labs, etc. that the trial may call for and send them there?

    Now that my rare Grade 3 uterine cancer has recurred, my oncologist will mirror treatment options used for Ovarian Serous cancers to try and work me back into short remissions between treatments. I better start understanding the process! YOU look for the trials and try to get enrolled PERSONALLY? I guess I thought your oncologist looked for applicable trials for you. I know my oncologist said there were no current open trials for my cancer (UPSC) at this time.

    I Don't Know
    I don't know the answer but my guess is that the doctors doing the trial have to do it for scientific control reasons. I gave the name to Linn of the oncologist because she is known for her individual approach to addressing chemos. Mayo has had some amazing results. I am also guessing that once someone has been in a trial and has had to withdraw, they probably cannot enter another similar trial, again for scientific methodology reasons. There are new approaches going on all the time and my sister and I have looked many of them up for my mother. I think I would suggest "enhancing" your doctor's research into what trials are out there by doing some of your own research. It certainly can't hurt and you may find something that your doctor couldn't..
  • Linn1
    Linn1 Member Posts: 47
    #9
    lindaprocopio said:

    When you participate in a trial far away from home...
    Do you have to travel often to a distant location when you are in a clinical trial far away? Or can your local oncologist do the special labs, etc. that the trial may call for and send them there?

    Now that my rare Grade 3 uterine cancer has recurred, my oncologist will mirror treatment options used for Ovarian Serous cancers to try and work me back into short remissions between treatments. I better start understanding the process! YOU look for the trials and try to get enrolled PERSONALLY? I guess I thought your oncologist looked for applicable trials for you. I know my oncologist said there were no current open trials for my cancer (UPSC) at this time.

    searching for trials
    Yes, as a patient you have every right to search for trials. Your doctor may or may not know of trials sponsored by other clinical institutions. It's typically up to the patient to make the calls/contact regarding the criteria for each trial. Each trial has specific requirements that the patient must meet in order to participate. American cancer society has a link explaining trials. Your doctor should know of trials offered thru their own center or hospital. Search National Cancer Institute or clinicaltrials.gov for more info. if you are interested. Obviously, using a website like this helps too!!
    Good luck.
    Lynn
  • msfanciful
    msfanciful Member Posts: 559
    #10
    PARP Trial?
    May I ask what is sort of trial is a PARP?
  • Linn1
    Linn1 Member Posts: 47
    #11
    msfanciful said:

    PARP Trial?
    May I ask what is sort of trial is a PARP?

    PARP
    The PARP Inhibitor targets cell growth of the tumors, works against a protein. I don't have the clinical study in front of me, so I'm not wording it accurately. You get the idea tho, the hope is to stabilize and/or shrink the tumors. It's used along with a chemotherapy drug...that varies depending on the trial. The trial I am involved in is currently closed but they may begin a phase II, if you are interested. The PARP's id # is ABT-888 used along with TMZ. PARP Inhibitor use is fairly recent, nothing is approved by the FDA, all experimental. I have been on the treatment for 6 months. It's being used to treat all types of cancers, one of the criteria was that you had to be stage IV. Let me know if you want more information. I would be happy to type the exact description. I'll just make sure I have the study in front of me!!:)

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