PARP trial - 8 week update

[swanky]

Well girls, PET/CT scans came back CLEAN. Supraclavicle node is too small to detect with PET/CT and the small spot in breast is GONE.

Physical exam shows node in neck to be about 4mm which may be all scar tissue.

Yipee! Plan is to stay on TBFW for 6 more months and then see what happens.

So far it appears to be a promising new tx for the BRCA + set.

HUGS!

Leea

[lilyecuadorian]

congratulation ...I happy for you ....you are doing good with your goals "kick c and babysitter grandbabies

[tousled1]

Leea,

Congratulations! Seems like you found the magic bullet.

[caya]

Great news Leea. Keep kicking that cancer butt!!

all the best
caya

[Sheila]

Leea
That is great news...like you, I am on the extended plan, trying to get the nodes to remain in remission....you are paving a new road with much luck! This is great for you and those of us who have these stubborn neck nodes!

[tammymarie1971]

Leea, that is great news!!!!
Tammy

[chrisy]

Hey, that's great news! And I love your codeword - it seems to me its a good ALL PURPOSE word!

[jones7676]

Great news - how wonderful. May this mix be magic for you for a long time!

[Karen Weixel]

Great news.

Karen

[Mary Anne in TX]

Doesn't the word clean just feel and sound wonderful! Great news, Leea!!!

[Soccermom]

OMG SWANKY you are in the PARP trial!!!! I am involved w an org called FORCE (www.facingourrisk.org (http://www.facingourrisk.org)) and we have been trying to get our BRCA+s having recurrences into the PARP trials! I am simply OVER THE MOON for you ...Thank G-d PARP seems to be a magic bullet!

WOOHOOOO!!!

Marcia

[Joy]

WooHoo, not only are you being a pioneer for so many, but you are reaping the benefits yourself. All of which you deserve. Keep us posted on all the excitement. Also, I'm afraid taht I'm quite ignorant about PARP. I would love to know what that is.

[Soccermom]

Hi Joy...PARP is to BRCA carriers what Herceptin is to Her2 and Tamoxifen is to ER/PR+ s (HOPEFULLY, its in trials, but Leea's response is pretty telling!). An oversimplification I know, but dont know how to explain it any other way. BRCA carriers are in a similar situation as Her2 ers as far as aggressive disease and recurrence..
I am SO glad Leeas in the trial!

Bug hugs,marcia

[Joy]

Thanks Marcia, I appreciate your explanation. I love the way we educate each other!

[swanky]

Marcia - I never thought it of it that way, but you're right! Long story short, the PARP inhibitor helps correct the DNA mutation that BRCA+'s have and ultimately causes our tumors. A major over simplification, but basically repairs my DNA. The best thing? No side effects yet...I have taken the 8 pills twice a day for over two months now and am fine. Maybe a little fatigued, but can't say if that is the drug or my rather energetic family.

[Soccermom]

Leea,
With all that you have been through in the last year and having little ones, I think you must be a pretty amazing young woman to have any energy!
I say I like your original acronym TBFW as it seems to doing the trick !
Best wishes,Marcia

[Vanessa]

Congratulations on your wonderful news!!!!!!

[harrie]

Swanky,
What does TBFW stand for?
I will have to ask my surgical oncologist who specializes in genetics about the PARP inhibitor for BRCA 2 people like me.
Thanks,
Maryanne

[swanky]

it is my own personal nickname for it (This Better F**king Work), but the formal name is PARP inhibitor. :-)

[harrie]

Right on TBFW!!!! Love it!!!
Maryanne

[Becky]

I am glad this drug is working for you and it is giving you a good quality of life too. Most of all, I thank you for participating in a clinical trial that will eventually help many women. It is a very brave thing to do.

[Kimberly Lewis]

Very glad to hear of your progress. I am interested in this trial, as both myself and my daughter are BRCA 2+. I googled PARP but didn't come up with much. Do you have any information or a link that I could use? Thanks in advance, Kim

[harrie]

Kimberly, you should check out www.facingourrisk.org (http://www.facingourrisk.org)
It is a site designed for those with an increased risk of br ca including BRCA positive. Soccermom is very involved with this site and knows a lot more about it. I have only recently begun to ck it out. I am also BRCA 2 positive.
Best wishes to you and your daughter.
Maryanne

[StillHere]

Just so F___ing Happy for you Swanky (Leea). Hope this new path works for a long, long, long, long , long, long, time. Peace to you and your energic family. Karen
PS: Thank you for your participation in the trial. I am still looking for a trial to participate in.

[swanky]

IRB# Pro00011828 at Cedars- Sinai Medical Center

Here is some info from the consent form, maybe this will help find it.

[Kimberly Lewis]

I am doing some calling around and the info you sent has helped me get going in the right direction - Kim

[MJo]

Just want to add my thanks to a pioneer. Long life to you. May your grandchildren drive you crazy.