I was diagnosed in June 2006 with stage III ovarian cancer. I had taxol and cisplatinum. The first 2 rounds, they tried IP in addition to my regular port. The IP port failed and did a lot of tissue damage. After 4 more regular rounds, I was told I was in remission in January 2007. I was diagnosed again in July 2008, had surgery in Sept. 2008 and started 6 rounds of chemo with carboplatinum. After 3 rounds, they did a PET scan and the cancer was growing back. They added Gemzar, and it is shrinking very minutely and slowly. I am in the middle of my ninth round of both (12th overall) and it is really taking a toll on me, with no end in sight. I do not have the genetic defect for ovarian cancer or breast cancer. I desparately want to get into a PARP study. What do I do? I am willing to go anywhere. Thanks. I can be emailed at KristaRDH@msn.com
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
PARP Trials
- By Kristardh
- Posted June 27, 2009 at 12:33 pm · 18 replies
- In Clinical trials
- Shared with the public
Explore topics in this discussion:
Cancer Taxol Surgery Hysterectomy Pain Breast cancer Ovarian cancer
18 replies
- Oldest first
- Newest first
- By zircons
- Posted June 27, 2009 at 3:48 pm
- Report post
Are they doing the PARP trial on women who are not positive for BRCA 1 and 2?
- By Jennali
- Posted June 27, 2009 at 8:48 pm
- Report post
Go to clinicaltrials.gov and enter your search criteria to pull up trials all over the world.
- By momanderson920
- Posted June 28, 2009 at 8:08 am
- Report post
I too would like to know about the PARP trials for non BRCA.
- By EvaS
- Posted June 28, 2009 at 9:26 am
- Report post
I am just diagnosed with Stage 1A ovarian cancer after a full hysterectomy. After operation, the oncology told me I am good and no chemo needed but that changed after the pathologist report showed clear cells in the lining of my left ovary. I chose not to go through chemo and taking the Budwig Diet now and will start on Essiac Tea next week. You might like to do a search on these two cures. I have just started, so can claim it is working yet.
- By sarahliz
- Posted June 28, 2009 at 10:44 am
- Report post
There is a lady called Laura in Bethesda, Maryland that yall need to call. They are the only ones doing Parp trials right now. I know because I just got off the phone with her on Friday. You have to have the BRCA for some of them. There is one that you don't but it is not open yet. Look up the Clinical Trial and then call her. She is great. I may travel up there to see her because I might be a good candidate.
- By Shearaw
- Posted June 28, 2009 at 12:49 pm
- Report post
This web page is an article about the PI, Dr. Elise Kohn. It has links to the trials she is doing, plus contact info for her staff http://bethesdatrials.cancer.gov/investigator-profiles/kohn/default.aspx
- By Jennali
- Posted June 28, 2009 at 9:29 pm
- Report post
I just checked out this link. Interesting info. Apart from your initial screening, the NIH pays travel and lodging costs so that you can participate no matter where you live. (not that it would be practical for just everybody, but still good to know)
- By Patricia123
- Posted June 29, 2009 at 7:09 am
- Report post
Sarahliz,,thanks!
I feel like a kid "I want my parp"
- By Leslie4999
- Posted June 29, 2009 at 12:18 pm
- Report post
EvaS:
What is the Budwig diet? What does your oncologist say about your decision to forgo chemo?
Leslie
- By JanLP
- Posted June 29, 2009 at 1:00 pm
- Report post
Krista and others, This is going to be a long letter so bear with me. I have been researching PARP studies for months and months, In 2005 I was diagnosed with ovca Stage IIIC and have had many different protocols of chemo. The longest I have been in remission was about 10 months. I am BRCA 2 positive. The last 8 months I have undergone chemo unsuccessfully. My Drs. decided they needed to think outside the box of the standard chemos. We discussed PARP trials and beginning last November I furiously started researching these. There was in fact one at the hospital where I am being treated and as much as they tried to get me into the study I was not a candidate. At that point, even though they clearly knew I had disease, on a scan no measurable tumor showed up. This was a prerequisite of that particular study. We even waited a little and I remained off chemo for about 6 weeks in hopes of a little measurable tumor showing up (sounds crazy to hope for measurable tumor) so I could qualify for the study. The Dr. closely monitored me during that time to make sure I was not in any danger of bowel blockage etc. When I finally had some measurable tumor the study was closed. You cannot imagine my frustration and disappointment. I have had about 8 different kinds of chemo and I was hoping for this study, as none of the chemos seem to be working at this point. But I kept plugging away and researching. I was put back on chemo because my CA125 numbers were soaring. My Dr. found another study at another treatment center nearby in April and immediately sent me there to see about getting on the list for that PARP study. I was put on the waiting list as patient #2 so I thought things would move rather quickly. I won't bore you with the details of the back and forth and ups and downs thinking I was next for the drug only to be disappointed a few times. It is not a black and white scenario with these studies... especially the Phase I studies. They must follow stringent guidelines. Not to sound disgusting or entitled (I am not like that) it does not matter what influential people you know or who you are. It is soley up to the discretion of the pharmaceutical company and them guiding the institution doing the testing as to how things operate. You cannot make things happen any quicker than they are prepared for. So the wait can drag out. For this particular study you MUST be off of chemo for at least 1 month. In anticipation of my time slot starting I have been off since May 9. The problem is you need to be ready when they call you for your slot and you never really know when that is. That is extremely unnerving as my CA125 3 weeks ago was over 6,600. The Dr. has decided not to even tell me what my numbers are now so I won't freak out. He wants me in this study and because we just did not know when they would call me to begin he feels I need to be ready at the drop of a hat. So he watches me like a hawk to make sure I am strong enough and safe. This past Friday I got the phone call - I AM IN!!!! 3 months later - I - patient #2 am next in line to receive the drug. It may still take 3 weeks which seems crazy but I cannot do anything about that. They seem to have their reasons. I am now getting uncomfortable from ascities fluid in my abdomen. My pants are tight, I am really bloated and have twinges of pain but I am letting all of that be and tolerating it, in preparation for the trial. I really believe this is a huge step and a possible non toxic treatment that will help me.
A few tips when looking for PARP trials. Someone above mentioned they are only for genetic mutations. That is incorrect. There are particular studies that are soley for genetic mutations but others that even admit people with different kinds of disease other than ovarian cancer. Phase I trials are a dosage study trial. They take maybe 3 patients at a time, which can translate to only 60 patients across the country. That varies depending on the study. A certain amount of the drug being tested is given to the first 3 patients and the patients are monitored carefully possibly for a month or so- scans, blood work, exams the whole deal. They are watching for toxicity with the drug. Then the next round of patients if that prior group does well is given a higher dosage of the drug. This dosage escalation continues with each group until they find the maximum amount of dosage with the least amount of toxicty. That is what Phase I trials are all about. That is why they take so long.
Phase II trials are testing the drug with variances. Usually Phase II trials enroll more patients and they can possibly all be on the study at the same time. The wait in limbo period for Phase II trials appears to be less because they already know the dosage from the Phase I trial. Possibly in the Phase II trial they are testing the drug alone compared to the drug given with chemo or another medication or even a placebo. These trials are often randomized or double blind (you don't know if you are getting the drug or not). The dosage has already been determined in the Phase I trial and now they are really studying the effacacy of the drug.
Remember when looking for trials to determine if you want a treatment trial, prevention trial, quality of life trial, screening trial and there are others but I cannot remember. I needed a TREATMENT trial and my guess would be for most of you who are not in remission the same.
www.clinicaltrials.gov is a good resource but not always updated so don't get excited when you see these online. Call first to see if the trial is still open or recruiting. Also go to the pharmaceutical companies websites and see if they have any trials they are doing. Email them and usually you are referred to another party who handles their studies.
The larger treatment centers especially teaching hospitals all have studies going on which can be found on their websites as well. I suggest you look at hospitals in your area first. Keep pounding the pavement. It took me 8 months. I started this before PARP was such big news and it still took this long. For some people the stars are just aligned properly, they fit the criteria right off the bat for a particular study. There are stringent guidelines and each study is different. Have knowledge about your disease, prior treatment, medications etc when you begin because these are all questions that will be asked of you.
It takes alot of time, some computer skills, a tremendous amount of patience and a huge amount of hope to find these trials and then finally be admitted to one. I am strong, have alot of tenacity and a positive attitude. I believe that is a HUGE part of the battle. If you are not strong and feeling well you should have family and friends help you if you are researching trials near your home. Remember, I have not had chemo in months, so except for the growing disease in me I am not debilitated from the treatment side affects.
Good luck to all of you. These PARP INHIBITOR drugs may one day be the answer for us. I pray they are. I hope if you are looking for a trial you get on one. I have to believe with the publicity this drug study is recieving more trials will open up. Right now very few seem to be recruiting in the US. Most of them have waiting lists. I have looked extensively. The rx companies that I know doing studies are Merck, Abbot and Astrozeneca. There may be others but these are the ones that seem to come up most.
They will find a cure and we are going to be instrumental in them doing so. We just have to hold on and surround ourselves with as much positive energy and love as possible. God Bless you all.
Jan
- By Kristardh
- Posted June 29, 2009 at 2:00 pm
- Report post
Thanks, Jan. I have been searching for clinical trials for a while, but just started looking for a PARP trial. It is really hard to find info when you don't know where to look. I just wanted to say that I'll be praying for you and I'm blessed to have happened onto this sight.
Krista
- By Jennali
- Posted June 30, 2009 at 10:00 pm
- Report post
Dear Jan, I want to thank you for sharing your hard earned research with all of us. I think it is very likely that I have defective BRCA genes, but I do not seem to meet the other parameters of any of the studies I have read about. I wonder, in any of your reading, do any of the trials offer the genetic testing beforehand? I do not have insurance that would pay for it.
I am so glad for you that you have managed to get into a study. I had no idea it was so complicated. Your tenacity really paid off. I hope that the PARP Inhibitors work for you, and that you can also take pride in having contributed to valuable insight into The Beast. I hope your wait is short.
Again, thank you, and may many blessings surround you on this leg of your journey.
- By Kristardh
- Posted July 1, 2009 at 12:07 am
- Report post
Hi Jan,
I went to day 8 chemo of my 12th round today. I got a call from Laura in Bethesda before I left and I may qualify for a study on Avesta and another drug. It stops blood to the diseased area. My chemo nurse, Barb, looked it up and thinks I might meet the other criteria. Laura told me that if I do this phase 2 trial and it doesn't work, it will be much easier to get into a PARP trial with them when they open up to non BRCA paricipants. Then Barb told me that she heard from the doctors at the Cleveland Clinic that the studies have been pushed forward because they are so promising. She said they thought it would be available way before the 2 years speculated. I sure hope so because it really seems to be working for so many people. Again thanks for sharing your experience.
Krista
- By Jennali
- Posted July 1, 2009 at 10:33 am
- Report post
I see my gyn/onc tomorrow and I plan to ask him what he thinks about the PARP inhibitors. He trained at the Cleveland Clinic.
- By Kristardh
- Posted July 1, 2009 at 4:24 pm
- Report post
Jan,
I see mine next Tuesday. My tumor was bsically unchanged in the last 4 rounds, so I'm due for a change in chemo or surgery. I may qualify for another study in Bethesda. They sent me info and I'm taking it with me. My Dr. is Pedro Escobar, maybe yours knows him. Where do you live?
- By Patricia123
- Posted July 2, 2009 at 7:18 am
- Report post
Sherah,,I have beenlooking for your link.
It deserves its own thread,,everyone needs to know about this as it is going to be important.
Pat
- By Patricia123
- Posted July 2, 2009 at 7:22 am
- Report post
Jan,,your long post was wonderful and deserves its own thread.
And you point out the need for an expert of some kind to know how to do what you have done for people. Not everyone even has a computer so they need a pro advocate.
Thanks,,it gives me tools I didn't have.
- By tootakky
- Posted July 2, 2009 at 4:07 pm
- Report post
EvaS-
Your story is identical to mine, and I can see more reasons not to do chemo than to do it. Were your doctors supportive?
tootakky
Add to the discussion