PARP INHIBITOR TRIAL

This is the first time I have posted so excuse the lengthly note. I have been dealing with Primary Peritoneal and Ovarian Cancer for the last 4 years. I have been in remission several times, but not longer than 9 months. I have been on various chemos - Carboplatin/Taxol, Gemzar and Cytoxin, IP Cystplatin, IV Taxol, Taxotere, Carbo again, Topoteken and Taxotere again. My CA125 has only escalated after the last 8 months of chemo and am now over 6600 with measurable tumor growth and ascities again. All things considered I feel fairly good and remain positive. I am waiting for a PARP INHIBITOR study. The key word is "waiting". They cannot guarantee me a date for my trial to begin but I must remain off of chemo for at least 1 month to be elegible. When a PARP study was accessible to me even though I clearly had OVCA I did not qualify because there was no measurable tumor. Now there is and the study is taking so long for my slot. Has anyone been on a PARP study or any other trials that they feel have been very benficial? If so what are the side affects and where was the study? Wishing everyone good luck and the hope for a cure. Stay positive and keep fighting!

Jan

By Jennali
Posted June 12, 2009 at 10:24 pm
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Jan, I have no answers to your questions (I have never been in a study or trial), but just want to wish you well and good luck getting into a study sooner rather than later. You have been through so much. I hope you get the break you need this time.

By artspoke
Posted June 13, 2009 at 2:03 am
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In October of 2006 learned that I had a genetic mutation of the BRCA1 gene making me high risk for ovc and breast cancers; at 48, while literally undergoing preventative surgery in an attempt to avoid ovarian cancer, I was without warning diagnosed with advanced OVC in December 14. I was optimally debulked and had 6 rounds of IV/IP Cisplatin/Taxol. I have been fortunate enough to achieve remission for 25 months! I have not participated in clinical trials but am very interested in information regarding PARP inhibitors.
Jan, I want you to sincerely know how honored I am to have contact you women of your caliber...women like you that are strong...and continue in this fight! May God richly bless and keep you! You give me the courage to never give up.

By JanLP
Posted June 13, 2009 at 2:58 am
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Dear Artspoke, How wonderful that you have been in remission for 25 months. From what I have been told your chances increase exponentially when you are able to stay in remission for years at a time. I look forward to the day when I am in remission for a long time.

Because you are BRCA 1 positive a PARP INHIBITOR from what I have been told would be a good choice for you IF you still had disease. Thankfully you do not so there are no PARP studies I know of for which you would qualify. You may want to ask your Dr. about MAINTENANCE studies or go to clinicaltrials.gov and look for maintenace programs there. This site has been very helpful in finding studies in my area or areas that I am willing to travel to. If you do not know about these studies, my experience is that they have been very difficult to get into. The time frame is often limited for recruitment and they do not deviate from the guidelines at all for admittance into the studies.

I am sure your Dr. told you of the importance to have your siblings or children if you have any to also be tested to see if they are carries of the gene as well. Knowledge is powerful. Insist that they be tested! WIth the genetic mutation you and I carry we need to be vigilant about our care and possibly do things prophylacticaly to stay or get healthy. Ask your Dr about this.

STAY HEALTHY. Surround yourself by family and friends who make you happy and stay positive. Wishing you continued good health.

Jan

By acosta1027
Posted June 13, 2009 at 7:44 pm
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Jan, I am in awe at the brave way you are handling all this. I was dx with Stage IIIC and was in remission for 18 months before my recurrence in Feb. I am in a trial with Carbo/Gemzar/Avastin (maybe - it's a blind study). I asked my doctor about the PARP inhibitor trials since I am BRAC 1 and 2 positive but he felt that this trial was a better one for me but seemed surprised that I knew about the PARP study. He did say that he was very optomistic about the future this study held for ovarian cancer patients.

I pray that you will continue to be strong and that you will find what works to keep the cancer under control or make it go away for good!

JoAnne

By JanLP
Posted June 15, 2009 at 3:40 am
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JoAnne, I hope your trial of Gemzar/Carbo/Avastin helps you. Let me know how you tolerate it. You said maybe it's a blind study. Do you know if you are getting the Avastin or not? Also did your Dr say that he thought the study you are on is promising for BRCA patients or the PARP study is a promising one for BRCA patients? I have been waiting and continue to wait for my PARP trial to begin or rather for me to be called for the trial which I have been accepted to. It is such a long drawn out process. I hope I can make it without having to take a treatment before my turn is called. I cannot have chemo for 1 month prior to beginning the study. My CA125 continues to rise but more important than that the bloating feeling and twinges of pain make me aware that the disease is back. That is rather unnerving. These studies can be so helpful but often incredibly difficult to get into. Good luck with yours. I think that for some of us thinking outside the normal tool box of chemos may be helpful. Keep fighting. This is such a terrible "club" to be a member of. I wish for all of you a loving family and wonderful friends like I have who help me stay positive, understand when I am not and give me the courage to continue to fight. I will not let this disease define who I am. I just can't wait to be free one day from IVs, chemo, hospitals and the fear I know my loved ones have for my future. That will be a great day for all of us! GET HEALTHY!

Jan

By acosta1027
Posted June 15, 2009 at 10:51 am
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Jan,

My doctor was referring to the PARP study as far as being very promising. I hope and pray that it will be your answer as well as hope for the rest of us who are BRAC positive. Have you had to deal with decisions regarding being proactive about breast cancer? My doctor has brought it up and my sister has had a double masectomy (preventative) but I'm not ready to go there yet.

JoAnne

By JanLP
Posted June 15, 2009 at 11:49 am
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JoAnne, My assumption is that your sister also tested BRCA 1 positive and this is why she proceeded with the surgery. 5 years ago I had DCIS which is Ductal Carcinoma Insitu of the Breast. Supposedly it was the "best" kind of cancer - almost pre cancer that one can have. Seems odd to use the word "best" in the same sentence as cancer. I had a lumpectomy and radiation at that time. Now that I know I am BRCA2 positive the question about a prophylactic mastectomy has come up but the Drs. tell me lets get through what I am dealing with now first. It has been 4 years and many times I lie awake at night wondering if/when I ever get in remission long enough from peritoneal and ovarian cancer will I do the mastectomy. Losing my hair is one thing... my breasts another...but my life unimagineable at this point. So it preys on my mind, but I don't have an honest answer yet. In my gut, I know what I should do. Emotionally I am scared and unsure. I watched Christina Applegate one day on Oprah talking about her surgery and some of the pain. But saying how nice it is to have cute "perky" breasts. Hmmm I'll have to keep that in mind. Have you decided what you are going to do or does your Dr. guide you in any one direction. I am checked 2 times a year and each time I hold my breath. I also get an ultrasound of my breasts besides the mammogram and get many scans with contrast throughout the year for my ovca which I hope would show something clearly if it existed. Bottom line - it is always on my mind. By the way, I am on a drug called Arimidex. I used to be on Tamoxifen. Are you taking either of those. You should talk about that with your Dr. Best of luck. Sorry we belong to the same "club". Wishing you good luck and nights filled with rest and not worry!

Jan

By Momsmyhero
Posted July 8, 2009 at 3:49 pm
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My mom is at the last stages of her 8 year battle with IIIC OvCa. I am trying to get her into a PARP Trial as we are out of options.

CA 125 9,982
Large tumor sticking out of chest
Golf ball size tumor sticking out of her back
Cannot walk from residual neuropathy damage to her legs but still kicking.

How did you get in that trial? We are running out of time! Help.
Annie

By JanLP
Posted July 8, 2009 at 6:00 pm
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Dear Momsmyhero or my new name for you -- Darling Devoted Daughter,
I know you must be by your real screen name ! I wish I could give you an easy answer as to how I got onto the PARP trial but it has been so difficult. Since last November I have been trying and it was not until last week that I recieved the phone call YOU ARE NEXT. I was admitted to this particular trial as patient #2 in April and just now my turn has arrived hopefully within the next few weeks. Actually the study I am in is even a different PARP trial then the one I initially tried to get into. Hopefully next is very soon as my CA125 numbers are possibly now higher than your Mother's. But keep in mind that the CA125 number is being counted at times merely as an indicator number and does not always correspond with the amount of disease. Ask your Dr. about the studies done at ASCO relative to the CA125 number. However, I understand your Mom has measurable disease and as you mentioned is running out of options. Go to www.clinicaltrials.gov and see if there are any PARP studies open in your area. Also go to NCI (National Cancer Institute) as well as the hospitals websites in your area and look under clinical trials. I have done fairly extensive research on these and there do not seem to be alot of trials recruiting right now that I know of. But daily new things pop up and you need to stay focused on your research and connect with these sites so they can also let you know if something becomes available (NCI) seems to be the best for that. You can talk to someone and give them all of your Mom's details and see if they can match her up to particular studies. YOU ARE A BLESSING TO HER. Your help and love will help her with this fight. I know that first hand from my sons. Try everything you can and talk to her Drs. to see if they know of any trials in your area. Where are you located? I have the luxury of having top doctors in a city like Los Angeles so I feel like I had somewhat of a jump start on this. If there is something I can help you with let me know. My virtual hugs and prayers are with you and your Mom. Good luck.

Jan

By Momsmyhero
Posted July 26, 2009 at 11:25 pm
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Jan,

Thank you for your kind words. I got a call about a PARP Trial the day before my mom died. She became septic due to a bowel obstruction that burst. Between the sepsis and the failing liver (filled with metastatic cancer), she went early July 14th. I am lost.

I pray that the PARP Inhibitors will bring you ongoing health. God Bless You.
Darling Devoted and Devastated Daughter.
Annie

By Jennali
Posted July 26, 2009 at 11:55 pm
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Dear Annie,
I am so very sorry for the loss of your mother. It is a painful rite of passage to see our parents leave this earth. I pray that the days ahead will bring you some peace.

Love,
Jennali

By JanLP
Posted July 27, 2009 at 5:36 am
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Annie.
I wish I had words of comfort for you. I am so sorry you have to endure the pain you are going through with the loss of your Mom. Hold on to the happy memories you both shared and know what a source of love and strength you were for her. She could have not fought this difficult journey without you.

I am still waiting for my Parp Study to begin. They "messed up" on a timing issue. I hope I can wait for my slot in this study but am questioning whether my body will hold out without some other sort of intervention. I am trying to remain positive.

You are in my thoughts. You will always remain your Mom's hero and she yours. You are her forever Darling Devoted Daughter.

Love,
Jan

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