Parp Inhibitor/Olaparib Clinical Trial

[cindyz]

During my time on this board, I vaguely remember references to "parp inhibitors" but never really understood what they were/what this meant. At Stephen's last onc visit, we discussed finding a trial for Stephen, and his onc said "there are none out there." He said if he knew of anything "worthy," he would indeed know about it. I asked him if I could find Stephen a Parp Inhibitor Trial (not really know what this was exactly, but remembering the words from here), would that be a good one to consider. He said yes.

I did find a Phase II study with Olaparib and sent it to our doctor. He said that it was certainly worth looking into. I was a little surprised since this apparently isn't a new trial and he had made the statement that there wasn't anything worthwhile out there at this time. Hmmmm.

The closest place conducting this trial to us is in Chapel Hill, NC. Apparently it takes a lot of doctor's visits with the "study doctor" initially, like once a week (about a 7 hour drive for us). We're debating what to do. How can you decide that a trial really is worth all that travelling? Does anyone have experience with this trial or the drug Olaparib - it would be in pill form that he took it, twice a day.

Thanks everyone.

[papajedi]

Sometimes their arrogance overcomes their goodwill.

[Ivona]

Well....I don't have any firsthand experience with trials...but..I would think that the trial physician *should* be able to give you some up-front info on the study...either by telephone, email or snail-mail, so you can at least read up on the details of the study. Then I would be calling the American Cancer Society to see what sort of support they provide for clinical trial out-of-towners like yourselves. I dunno about the ACS...but the Canadian Cancer Society does have such support programs in place. Good luck and keep us posted.

Footnote: sounds like your onc is either not on the ball or just doesn't give a crap....

[cindyz]

Thanks for that suggestion, I am going to look into the ACS like you suggested. I had no idea they helped with stuff like this.

I too agree about the oncologist statement. The thing is, he DOES care. We like him. But this comment about "if there was something out there I would know" left me a little befuddled.

I am searching old posts here to see if I can get some information on the Parp clinical trials. It doesn't seem like much is here...does anyone know if the parp drugs are a relatively new development?

[joeyooser]

I'm glad you're researching and finding things. Don't wait for the onc to suggest things - you've got to be aggressive and advocate for yourselves. I'm afraid I don't know anything about this trial, but I just wanted to say go for it. It sounds like you've maybe got the cancer on the defensive right now - I say kick it while it's down.

[mimichapman]

Cindy,

The way I understand this treatment is that a trial already conducted with parp inhibitors showed that they worked well on BRCA cancers. With the theory being that since they work on those DNA defective cancers, they might work well on Microsatellite Instability high colon cancer. I think I remember someone on the board trying the parp inhibitor colon cancer trial??

You must have "measurable disease" to participate in the trial, which, as of now my husband does not have, post CRS/HIPEC. The oncologist at Vanderbilt has had him on NO chemo since surgery (which is a little scary to me). But...... if/when? anything shows back up, he wants to put him in this trial, as my husband's colon tumor tested MSI high.

Hope that is helpful.

Mimi

[Bev G]

Hi Cindy: I'm sure you've already seen this but, just in case, I'm posting the link. I thought it was a pretty understandable explanation of PARP inhibitors, which I'd never heard of. Good luck to you and Stephen while you are looking into this. All the best, Bev

http://www.parp-inhibitors.com/

[jscho]

At the risk of sounding like a "know-it-all", a few months ago there was a question about PARP inhibitors and MSI status. I wrote this:

"I think those with Lynch syndrome and high MSI typically have deficient double-stranded DNA repair pathways. PARP inhibitors block repair of single strand breaks, which then get converted to double strand breaks upon replication. The PARP inhibitors make chemotherapy more effective since single strand deficiencies cannot be repaired and therefore kill the cell. The effect is greatest when some of the redundant DNA repair pathways are not present, as is likely the case for high MSI tumors."

I wonder what researchers have discovered about the efficacy of PARP inhibitors for non-MSI high tumors.

From another poster in another forum, I learned of another drug, gemzar, that recently completed phase II trials and had some promising results. I don't think they are ready to start phase III trials. The problem is Gemzar is not yet FDA approved for colorectal cancer, and this usually leads to insurance rejecting claims. You may be able to get insurance to pay for the drugs if your oncologist can write a letter of medical need.

Gemzar appears to have only mild side-effects and should act cooperatively with xeloda (both create base deficiencies for replication, but for different bases). There is another new drug, pazopanib, that targets growth receptors like avastin does, so acts quite differently. It has a nice track record of slowing progression (by factors of two!). This sounds like a potent cocktail, attacking cancer cells on multiple fronts, though not yet in our arsenal.

[Terry]

Maybe the drug was in an earlier trial when you originally asked about it and oncs. don't use it until it gets to a certain phase. Just saying, maybe.

My onc. doesn't seem to know about a lot of trials. I think they're so busy with patients they go home and crash. It's really a shame we have to keep an eye on these ourselves. I think that's one reason it's good to go to the big teaching hospitals or cancer specialty hospitals.

[dianne052506]

cindyz,

Don't have any information, just a note regarding something my onc said. When we were meeting to review plan B, after major rxn to the oxaliplatin that has held the beast at bay for 2 years, Dr. M. made the statement, "If need to keep you alive about 2 years because that's when the Parp inhibitors should be ready. I think they'll be the latest and greatest thing for colorectal cancer."

Haven't gotten to the point of trials yet. He'll make me do Folfiri first.

Good luck. I'll see Dr. M. on the 23rd and try to find out more information.
Dianne

[cindyz]

Wow, seems like this might be a definite trial to consider. I did some research on this board and saw another poster who actually progressed on olaparib (I think it was this trial) and she quit the study after her 2-month scan.

I was very encouraged by the "keeping you alive for 2 years" statement. Recently Stephen and I had a discussion about time. If we can make weeks turn to months, we'll just live in those little increments with hope and encouragement as long as he is feeling as well as he is now. He still has some harder days than others, but nothing compared to this past January. I know that different drugs are being developed and different combinations can be used, and I also know that we're doing the very best we can in staying informed, doing our own research, and being our own advocates.

I still am a little confused about which trials to choose (I printed up 77 clinical trials for Stephen's stage and for his situation)...how the heck do you choose between Dwr456 or AK1JKE or 67MLKI8? Those are just made up names, but you get what I'm saying.

Thank you all for the help with this.

[dianne052506]

cindyz,
I should remember, but where are you and Stephen located?
Dianne

[cindyz]

Hi Dianne,

We're in St. Augustine, Florida (about 30 minutes south of Jacksonville).

[Ellen]

Hi,

I'm the one that was on this trial over the summer. I live in Portland OR and traveled to Swedish Cancer Center in Seattle to be part of it. I was among the first participants.Travel is pretty challenging--getting there for treatment weekly for the first 6 weeks (I believe) and then every other week. I guess it depends how you're feeling and what else is going on. (I have two tiny children who were very sad each time that I left.) Of course had the treatment WORKED for me it would be worth everything.

My onc was very optimistic about it, but unfortunately I had progression after the very first 8 wee round/set of scans. So I was bumped off.

I am "microsatellite stable." Now they believe that the parp inhibitor may be more effective for those who are microsatellite instable (MSI). They are ONLY accepting MSI patients at this point. So, if your husband is MSI hopefully he'd have better luck than I.

I've written about the trial on this forum--you may want to do some searching around. Also, feel free to PM mee if that'd be helpful.

I wish you and your husband all the best!

Ellen