Clinical Trial for Triple Neg & BRCA 1 positive

cheekymonkey

Clinical Trial for Triple Neg & BRCA 1 positive

cheekymonkey

I had to let everyone know about a new drug that is being tested at several different places around the country. I don't know if this has been posted here before, but in case you are Triple Negative AND BRCA1 positive, you may be able to participate in this trial. It sounds amazing! It doesn't last much longer, but I just found out about it. I think there is still room left in certain cities. You have to contact them to see if you are eligible, have not found a chemo that works or have run out of options, then this is for you! It's also supposed to not have as many side effects as chemo. My sister is going to try to get on it, but I also wanted to share this with others in the same situation. Go to www.clinicaltrials.gov and look up number NCT00494234

It's a Phase 2 trial with oral meds rather than I.V. drugs and it looks just great.

Good luck girls and I hope someone is able to take advantage of this! They are finally starting to recognize Triple Negs like us!! 

Mitzi

p.s. The study is sponsored by AstraZeneca KuDOS Pharmaceuticals

CalGal

Hi Mizi -

The Kudos/Astra Zeneca PARP Inhibitor (ICEBERG1) Clinical Trial is a great thing!   I've been on it since August - and posting about it since then.  Despite the trial being open to only 40 internationally, when I last saw my onc a few weeks ago, it was still open.

Best of all - the PARP pills are shrinking my lung met!!  I've been fortunate to have minimal side effects. 

However, it is not just for BRCA1 triple negs (which I am), but also BRCA2.  Besides being BRCA positive, the other req'mts are for measurable evidence of mets and failure of at least one chemo in the mets setting.

I noticed you're in LA.  Is your sis?  I am.  If so, will she be treated at Cedars or City of Hope?

Best to you and your sis,

CalGal 

cheekymonkey

Hey CalGal!

Wow! Thank you for writing! That is GREAT news! Unfortunately, my sis lives in Wisconsin and I live in LA. We tried to get into City of Hope, but there was so much red tape, that we have hit some brick walls because of her insurance. I wish I could get her to accept my mom's payment for the $1000 doctor visit to see if she is eligible. She does have measurable disease, and she has failed MANY chemos in the past. Now we just have to see if she is is BRCA positive, and since I am, hopefully she will be too.

Are you being seen at Ceders or City of Hope? 

How long will you be on it? What kinds of side effects are you having? She will have to stay with my husband and I for at least two months because of all of the testing involved. After that, I'm not sure what will happen. (All I know is that I would MUCH rather be in LA right now than Wisconsin where they just had another 2 feet of snow and -35 temps!!!)

Just wondering...when you were first diagnosed? How long before they found your mets?

Thanks so much for your help! Wishing you continuing good luck and success!

mitzi 

cheekymonkey

CalGal, I'm sorry! I just looked up and saw your history, so you don't have to take the time to tell me! You've been through a lot, and are still going strong. You are very inspiring to so many!

Thank you-

mitzi 

Analemma

Cheekymonkey, I've talked to the one of the researchers at University of Penn (one location) and she indicated that they are opening up many new locations for the PARP1 trials this spring and summer.  You can pm me for her info.  I also have a PDF of the trial consent form that has lots more about the trial.

CalGal

Hi Mitzi -

Thanks for the kind words. 

I bet your sis would rather be with you here in LA, instead of freezing WI! 

I'm getting treated at Cedars, although I had consults at both Cedars & COH before starting the trial.  At that time (8/07), the trial was open at Cedars, but not yet at COH!

The first 8 wks on the trial, you have blood-work done weekly.  The 8th week is "interval blood-work" where they put in an IV and check your blood 5 times over 6-7 hours.   After that, blood-work is done monthly.   CT scans are done every 8 weeks.

I've been very fortunate to have minimal side effects.   The first weekend on the pills, I felt like crap and had a headache (something I rarely get).  However, there were some other extenuating circumstances (heat wave, new too-strenuous exercise program, 2 cosmopolitans one night - all around that time - so I can't say for sure it was the meds)!   

The most common side effect is gastro-intestinal upset.  I felt kinda queasy that first weekend, but have been fine since!  I do need more sleep, but that's been constant since chemo.  Although lately, I need even more sleep.

This Monday, 2/11 is my third "every 8 wk scan".  On the first two, my lung met shrunk 25% each time!  I'm hopeful that I'll get continued shrinkage, but it's nerve-wracking each time ...  

Feel free to pm me if you have more specific questions.  

As I've posted elsewhere, to me, the only good thing about my BRCA1 mutation is being eligible for this trial!  

Best to you and your sister.

CalGal