PARP Trial for NON BRCA women and C-Diff

Lisa13Q
Lisa13Q Member Posts: 677
edited March 2014 in Ovarian Cancer #1
Hi All,

It's been awhile. I've had a rough few weeks. It seems that I have something called C-Diff. It's a bacteria one picks up in hospitals and trust me it makes you very sick. I am going to need a procedure that I don't want to describe. Anyway, I wonder where I picked up this bug? Hmmmmmm what hospital have I been in? Another side effect of this awful OVCA. I have also been on a pity pot since my mother's PET. Trying to get over it.

Anyway, Mom has just been admitted into a PARP+ABT 88 TRial at MSKCC. There will be 150 women involved. 100 will get the PARP + ABT and 50 will get Doxil. Mom will find out in the next few weeks which she is going to get.

The reason I am telling you this is for those of you interested in such a trial...I believe there are spots still open and it sounds like an exciting study because this is one of the first times non BRCA + women are going to get the drug. Sooooooo......those interested may want to call MSKCC to see. I wanted you all to be aware as I am not sure the doctors share with one another what they are all doing and I want you all to have as much info. as possible. This sounds cutting edge.

I am off to a 5 day spa adventure and see if I can feel better. I have had terrible bowel issues and have little stamina. I will have my procedure when I return. Hope you are all well. I think of you often, but haven't had anything positive to offer.

We are coming up on the one year anniversary of my mother's diagnosis. I can't believe it has been that long. Thank you all for your support over this time. I couldn't have gotten through it without you. I pray for another year. God Bless.

Comments

  • kayandok
    kayandok Member Posts: 1,202 Member
    #2
    LIsa!
    I was just going to PM you today, had not seen you around and was wondering how you were doing. I'm sorry that you caught C-diff, and been so down. PItty Pots are good and I have sat on mine a few times. But, after while, I get tired of the smell and have to pull myself up and move on. Accepting this disease and everything that surrounds it is a process, I guess.

    I hope you have a wonderful time at the Spa and can feel refreshed in body, soul and spirit!

    Hugs,
    kathleen

    PS Glad you mom got into the trial. I wish I could participate, but I live too far away. We do have a PARP trial in Japan, but I don't qualify because I am not Japanese. I guess it screws up their "Japanese women" stats, LOL. I have thought about fighting it, believe me, but I have lived here long enough to know that some things will never change.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    GOOD LUCK
    C Diff is YUCKY!!! I hope you are feeling better soon. Did you tell the hospital you contracted cdiff?

    Good luck with the trial. Let us know how Mom makes out. I do not qualify as I have been on Doxil before.
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #4
    nancy591 said:

    GOOD LUCK
    C Diff is YUCKY!!! I hope you are feeling better soon. Did you tell the hospital you contracted cdiff?

    Good luck with the trial. Let us know how Mom makes out. I do not qualify as I have been on Doxil before.

    Hey nancy
    I am sorry you can't be in the trial..I was really hoping. I even spoke to Bell-McGwinn about you. Maybe if the results show promise, they will extend the offer to others. I did not tell Memorial hospital but you know what, with the Ovarian cancer and living on that floor for over a week, you know, you've been there. We had to go in through the ER. Have you ever been to Memorial's ER? I am not surprised. Mine won't go away and so have to have a procedure I will not describe in about 2 weeks.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #5
    Lisa13Q said:

    Hey nancy
    I am sorry you can't be in the trial..I was really hoping. I even spoke to Bell-McGwinn about you. Maybe if the results show promise, they will extend the offer to others. I did not tell Memorial hospital but you know what, with the Ovarian cancer and living on that floor for over a week, you know, you've been there. We had to go in through the ER. Have you ever been to Memorial's ER? I am not surprised. Mine won't go away and so have to have a procedure I will not describe in about 2 weeks.

    urgent care
    I was in urgent care at Memorial twice. Once I was admitted and once I was not admitted. I never had any problems...except waiting for a room when I was admitted. So, Mom got cdiff too? Has she been hospitalized recently? She had to go to urgent care because of the cdiff? I'm just trying to understand the scenerio. WOW. I would let them know.

    It's been a long time since I worked the floor as a nurse. Prior to leaving my job I was working in management for several years. I know the signs of cdiff and I know they give oral medication. I can't recall a case, in my experience, that didnt' go away.

    Good luck to you and I hope you feel better soon.

    Did you see Libby's post and read that she is in a similar trial to your Mom? I don't think her trial has Doxil in it. I will now be on Gemzar alone and I am VERY disappointed. I have chemo this Wednesday and I will be speaking to my oncologist about it. I receive chemo at Sleepy Hollow. I am thinking about seeing Dr. S exclusively and receiving my chemo in NYC. Dr. S does consult on my chemo regimen but I wan't more aggressive treatment.
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #7
    unknown said:

    This comment has been removed by the Moderator

    consult
    Hi Connie,
    First off, thank you so much for thinking of me and including us in your prayers. It really means a lot to me. XOXOXO

    Sorry to hear you have a second recurrence. I am curious to know how long you stayed in remission the first and second time and what meds were used. There is very little information in your bio.

    It certainly wouldn't hurt to get a 2nd opinion. I would go onto MSKCC.org and read the GYN oncologist bios. Dr. S had a great bedside manner. He is soft spoken and seems non rushed. He often speaks to me on the phone so I don't have to be troubled driving in to the city. I am very happy with MSKCC overall. My oncologist who works out of the sleepy hollow location is a general oncologist. SHe told me that MSKCC does only evidenced based treatments. Other hospitals like NYU do things 'outside the box'. The only problem I see for me is that there are very little clinical trials I qualify for. ALthough, Dr. S told me I don't need to do a trial yet. In light of my allergic reaction to carbo I am thinking I might be heading there. I hope there will be a trial for me and I won't have to go to a different cancer center for an appropriate trial. Dr. Bell McGuinn sounds great too. She is LisaQ's Moms doctor.

    GOOD LUCK and let me know how you make out.
  • Unknown
    Unknown
    #8
    This comment has been removed by the Moderator
  • LPack
    LPack Member Posts: 645
    #9
    Trial
    Lisa,

    Sorry about your C-Diff. I too am going to be part of that trial. 150 women from the world, not just the US.

    I am number 19 at The James Research in Columbus, Ohio. They are taking 20. I will know by July 19 if I get the Doxil or the inhibitor. At least if Doxil does not work you still can try the ABT-888/Temo.

    Enjoy that spa!!

    Living for Eternity,

    Libby
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #10
    LPack said:

    Trial
    Lisa,

    Sorry about your C-Diff. I too am going to be part of that trial. 150 women from the world, not just the US.

    I am number 19 at The James Research in Columbus, Ohio. They are taking 20. I will know by July 19 if I get the Doxil or the inhibitor. At least if Doxil does not work you still can try the ABT-888/Temo.

    Enjoy that spa!!

    Living for Eternity,

    Libby

    Hi Libby
    yeah...I look forward to hearing from you how it goes. My Mother's cancer is growing very quickly, apparently spots all over. I pray it works for you both. They took Mom's blood and other things wednesday and she knows more Monday. She is concerned that they won't accept her??? Once the onc. says she's in, she's in isn't she?

    The C-Diff is horrible. I hope Nancy is correct and it will go away. I am on my second round of flagyl...in my ist recurrance....and I cannot see my mother until it goes away, as she is immunocompromised and I am contagious.

    Please keep me posted on how you are doing. I'll keep you posted on my Mom. I am getting worried about her as it's spreading so fast. I want the gyn onc to treat her today~!!!!!
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #11
    nancy591 said:

    urgent care
    I was in urgent care at Memorial twice. Once I was admitted and once I was not admitted. I never had any problems...except waiting for a room when I was admitted. So, Mom got cdiff too? Has she been hospitalized recently? She had to go to urgent care because of the cdiff? I'm just trying to understand the scenerio. WOW. I would let them know.

    It's been a long time since I worked the floor as a nurse. Prior to leaving my job I was working in management for several years. I know the signs of cdiff and I know they give oral medication. I can't recall a case, in my experience, that didnt' go away.

    Good luck to you and I hope you feel better soon.

    Did you see Libby's post and read that she is in a similar trial to your Mom? I don't think her trial has Doxil in it. I will now be on Gemzar alone and I am VERY disappointed. I have chemo this Wednesday and I will be speaking to my oncologist about it. I receive chemo at Sleepy Hollow. I am thinking about seeing Dr. S exclusively and receiving my chemo in NYC. Dr. S does consult on my chemo regimen but I wan't more aggressive treatment.

    Hi Nancy
    No mom didn't go into Urgent care for C-Diff, she went through er at Memorial for Kidney issues. She had to go through ER to be admitted. I was there and living in the hospital with her for a week, and apparently hospitals tend to be where one picks this up. I'll never know for sure, I just wish it would go away....

    I support your decision to go in to the city for more aggressive treatment. I think it makes a difference to see the docs. in person, although I know what a drag it is to go into the city.

    I did read Libby's post and I think Libby and my mother are in the same trial. They must be taking 150 women from all over. That is good I think. I pray it works for both of them. My mother's cancer is growing very rapidly. More spots in even 3 weeks. I wish they'd put her on chemo tomorrow but....I am trying to accept I have no control...

    I hope you are feeling ok and your boys are doing ok as well....have you asked your doc. about avastin? Prayers to you and your boys!

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