Lynparza: Anyone have any experience... - Advanced Prostate...

Advanced Prostate Cancer

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Lynparza

mrscruffy profile image
31 Replies

Anyone have any experience with Lynparza? If so what are they? SE's and results?

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mrscruffy profile image
mrscruffy
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31 Replies
mrscruffy profile image
mrscruffy

I am assuming you are positive for BRCA2

cancervictim profile image
cancervictim

This is fascinating. Thanks for sharing.

mrscruffy profile image
mrscruffy

Been on ADT for 7+ years. Just beginning to show signs of failure

mrscruffy profile image
mrscruffy

That is the plan, have the Lynparza already, just going to do some scans before taking so we have a baseline

mckytona profile image
mckytona

Been on it for month and a half. Have BRACA. Side effects have been very mild. Some stomach discomfort that can be handled by nausea drugs. Have not had follow up to see how it is working. Will let you know when I have follow up test n a couple of months.

mrscruffy profile image
mrscruffy in reply tomckytona

Thanks for the input

KocoPr profile image
KocoPr in reply tomckytona

How did your follow up test do?

mrscruffy profile image
mrscruffy in reply toKocoPr

Red and white blood cells are getting better and PSA is .14 down from 1.7 No new mets and cancer is not growing. I would say that is a good outcome

KocoPr profile image
KocoPr in reply tomrscruffy

Excellent! I am about to try olaparib intermittently with SPT during my pBAT cycle. This thread is eye opening

mckytona profile image
mckytona

Go to manufactures website. They have programs for financial assistance. I am receiving drug cost free.

Cooolone profile image
Cooolone

Is interesting (above)...

Certainly an issue to use off label as insurance will definitely bounce it back considering it's cost. ($20k per month)... And approval is for BRCA anomalies.

I'm BRCA 1 & 2 deleted, added Lynparza as a kicker a little while after Orgovyx began failing after just short of one year of use. Thinking metabolic issue, switches to Degarelix, which stabilized PSA, added 2nd generation lutamide (Darolutamide) and PSA and T dropped like a rock. Followed with Whack-a-mole RT to suspicious spots found on scans, and the icing was Lynparza post RT... Almost one year now with Lynparza.

Fatigue always present (ADT), muscle loss, and lately appetite issues not helping. Definitely some serious anemia borderline blood issues but not so low to cause for action. Not sure how much the Lynparza is problematic with stomach or intestinal discomfort as I'm also on metformin for blood sugar levels which causes the same. But I'll say it hasn't contributed to it that I can tell... For the most part, aside from blood changes, I didn't tell much difference after starting Lynparza and adding it to the Degarelix and Darolutamide.

Big question for me, is whether or not to ever stop the drugs, and take a peek to see if the RT was successful in getting rid of what may have been laying around to cause the recurrence. A conundrum because it occured just a year post Chemo. My MO has said, for me, that no, it wouldn't be such a good idea. I agree, but curiosity remains. Every time I've recurred, my PSA DT is <3 months... So it's like Russian Roulette if I ever want to do that. For now, the three drug cocktail is working. T below 8, and PSA undetectable (knocking on wood) lol.

Stepping back, I'm a rare case of PCa STG.IV which migrated to the peritoneal and appendix, last treated suspicious spots on the lung (and a few other spots) as well. So not your typical presentation or characteristics. Just a disclaimer... ;). Meaning "My" Cancer, isn't yours, I'll share my story but it doesn't mean we share a path on this journey!

Good Luck and Best Regards

Spyder54 profile image
Spyder54 in reply toCooolone

Great read Coolone !

Your Lynparza journey combined with PCa Warrior give us insight into DNA Repair blockage of PCa cells allowing apoptosis.

You dudes are leading edge. Oncologists across the Country could learn a bundle from this website. Thanks guys!! Great post. Thanks Seasid for bringing to my attention. Mike

SF22 profile image
SF22

There is a Phase 1 clinical trial call LUPARP. I'm not in the trial, but my MO suggested trying it. I started on Oct 19. It consist of mixing pluvicto with lynparza. I take the lynparza 4 days before the pluvicto injection and 18 days after. I am in my first cycle. No side effects yet.

westobutch123 profile image
westobutch123 in reply toSF22

Please send updates after a few months. Thanks.

Spyder54 profile image
Spyder54 in reply toSF22

Please keep us updated SF22 Hopefully side effects remain low.

HikerWife profile image
HikerWife

Hi - I'm unfamiliar with your abbreviations SSB, DSB, and SPT. None of them are in the abbreviation list posted here. Help, please? Thanks.

Stoneartist profile image
Stoneartist in reply toHikerWife

Unfortunately there are some on this site who think it is a good idea to use masses of abbreviations - I have written on this before - makes any posting less readable and prone to be ignored. Its good you also raise the question - the more of us who protest the less abr (abreviations) :-) there will be

DrFeeelgood profile image
DrFeeelgood

I’ve been on it for 2 years. Little nausea fort week I started it but don’t have any side effects after that.

mrscruffy profile image
mrscruffy in reply toDrFeeelgood

Good news indeed

KocoPr profile image
KocoPr in reply toDrFeeelgood

Do you take it with or without food and what dose

mrscruffy profile image
mrscruffy in reply toKocoPr

I take it at night before bed. I started with 600mg but it affected my blood so we dropped down to 450mg. May try 300 after next set of tests. I should add my MO is called the "Michael Jordan of Lynparza" He was part of the development team and knows it inside and out and what complications to look out for and how to deal with them

HikerWife profile image
HikerWife

Thank you.

tsim profile image
tsim

Yes, all the FDA should be doing is making sure it's not going to kill or injure anyone. Efficacy should be determined by doctors and patients.

mrscruffy profile image
mrscruffy

Insurance couldn't give me a straight answer on price until I had scrip. I went to Astra Zeneca direct

Har036 profile image
Har036

My husband has an ATM mutation and has been on Lynparza for three years. He takes 200mg twice a day. Initial starting dose was 400mg twice a day. He experiences fatigue with decreased blood counts and occasional digestive issues.

Hunterfugi1 profile image
Hunterfugi1 in reply toHar036

Did it reduce his PSA?

Spyder54 profile image
Spyder54 in reply toHar036

I too have the ATM Repair gene. This allows for less DNA double strand breaks, allowing the Ca to grow faster.

Did you read PCa Warrior statement above how most of the reversal with Lynparza happens in the first 24-48 hrs thinking lower doses for less days giving less side effects. Maybe Day 1-2-3 of each month vs daily?

It is early times, but what a wealth of information. Mike

Hunterfugi1 profile image
Hunterfugi1

I have heard about Lynparza being taken only for a few days at a time....how does that work out?

Har036 profile image
Har036

Foundation One Liquid

AR-Abiraterone-failed within four months

ATM-Oliparib-present treatment-3years-remains undetectable

PIK3CA-none

PTEN-none

Har036 profile image
Har036

The above are the mutations found and the treatment the mutation is responsive to.

He remains on Lynparza and PSA remains undetectable.

I hope this helps!

Purple-Bike profile image
Purple-Bike

Fantastic thread, I only see it now,.

Is there anything written yet on pulsed dosing of a PARP inhibitor? Even if not published - in your book? - it would help me in getting MO on board on action re my two newly discovered mets.

I am BRCA2+ but I imagine that does not lessen the potential of combining PARP + BAT. If I am wrong, please let me know. .

If you know of any more recent data (from Denmeade) on BAT for HSPC,than the BATMAN trial, perhaps you could share it.

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