Lynparza: Am starting Lynparza next... - Advanced Prostate...

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Lombardi24 profile image
38 Replies

Am starting Lynparza next week. Any one else taking it?

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Lombardi24 profile image
Lombardi24
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38 Replies
vandy69 profile image
vandy69

Good Morning Lombardi24,

I have taken Lynparza during the course of my treatments (please see bio for history).

It was prescribed for my by Dr. Charles "Snuffy" Myers after the results from a Guardant360 liquid biopsy revealed that my PCa had an ATM defect. Lynparza was added to the combo of drugs that I was taking at the time and I continued taking it while undergoing proton beam radiation.

It provided positive results for about 9 months before PSA started to rise again. The clinical trials of Lynparza indicate about that duration.

No additional side effects that I recall, but it is extremely expensive ($10,000/month retail), so make sure that your insurance coverage will handle it!

Best wishes. Never Give In.

Mark, Atlanta

Lombardi24 profile image
Lombardi24 in reply tovandy69

Thx Mark. I don't understand why my oncologists (Sloan & Dana Farber won't or haven't tried multiple treatments at thed same time. The only combo has been Lupron with Adt or chemo.

vandy69 profile image
vandy69 in reply toLombardi24

Dr. Myers approach was to hit aggressive cancer aggressively.

He strongly believed in the power of combinations, as long as the side effects were manageable. With aggressive cancer, you may not have the time for the single drug approach. The odds of something working go up geometrically with combinations.

I am convinced that his approach got me this far. I was extremely saddened by his retirement.

Mark, Atlanta

Lombardi24 profile image
Lombardi24 in reply tovandy69

How are you doing now Mark? Remission?

vandy69 profile image
vandy69 in reply toLombardi24

Far from it. In September 2017 we discovered that I now have prostate cancer mets in my liver.

Just completed 6 cycles of Docetaxel/Carboplatin chemo and now have a lesion in my rectum. Awaiting MRI results to determine course of action.

Thanks for asking. Never Give In.

Mark, Atlanta

Lombardi24 profile image
Lombardi24 in reply tovandy69

Thx Mark and I am sorry. Keep fighting. 💪

mlengle profile image
mlengle in reply tovandy69

Mark,

In a month I start Taxatere/Carboplatin Chemo. Would be interested in hearing how heavy the SDs were. My onc says it can be pretty rough.

Hang in there,

Mike

vandy69 profile image
vandy69 in reply tomlengle

Hi Mike,

Here's my experience:

1. Prescribed Dexamethasone day before, day of, and day after infusion to moderate SEs

2. Infusion of Aloxi before other infusions to prevent nausea and it worked.

3. Med Onc said to take orally daily 100mg B6 to mitigate peripheral neuropathy.

4. I iced my hands and feet during Docetaxel infusion to prevent peripheral neuropathy, but still got some in feet.

5. Used Biotene products for mouth care as your mouth may get sore.

6. I left each infusion with On Body Injector of Neulasta to boost white blood cells. Told to take Claritin day before infusions and for 6 days to minimize any bone pain and it worked.

7. Fatigue will become a factor. Took Wisconsin American ginseng, Google it and Mayo Clinic to see results of their trial.

8. My infusions took place on Tuesdays, so fine day of and day after due to Dexamethasone. By Thursday I was getting tired and by Friday I kept my pjs on all day. Fatigue is cumulative so as cycles progressed, it took longer to get back to "normal".

Everyone is different so you may have a different experience.

My PSA dropped from 10.8 to .4 and from chemo and liver mets got smaller and less pronounced. Now getting a rechallenge with Xtandi for past 3 months which I had failed after 12 months in 2015-16. Wish you great results😃.

Best wishes. Never Give In.

Mark

mlengle profile image
mlengle in reply tovandy69

Wow Mark, thank you for the detailed info. You mentioned Docetaxel but not Carboplatin. Are the two given together, one after the other same day or did you complete Docetaxel first then Carboplatin?

I did 6 infusions of Taxatere after diagnoses 2 years ago and remember thinking I couldn't do a 7th- just too weak. I now have 12 or so bone mets. Xtandi and Lynparza have had zero effect so this is, in my mind the Hail Mary final pass. Mine is a BRACA 1 mutation which is very aggressive so I'm a bit different.

I'll use your info for guidance when I start chemo.

hope the best for you,

Mike

vandy69 profile image
vandy69 in reply tomlengle

Hi Mike,

Sorry for any confusion. On infusion day, I first had Aloxi, followed by Docetaxel, next Carboplatin, and left with On Body Injector of Neulasta.

Mark

mlengle profile image
mlengle in reply tovandy69

Got it, thx Mark

tallguy2 profile image
tallguy2 in reply tovandy69

Keep fighting, Mark.

Bob, Denver

snoraste profile image
snoraste in reply toLombardi24

I have BRCA2 mutation. And this was a big decision point for me - to add a PARP inhibitor right upfront. I spoke to 5 different centers - MSK, Dana, Weill Cornell, mount Sinai, and a private biotech company specialized in prostate.

Of the 5, only one (mount Sinai) was pushing on adding the PARP upfront. The argument for using it is “hit them early and hit them hard” theory.

The argument against is early resistance, given all the combination therapies that are in clinical trials with PARP and one more agent (PDL-1, etc). They told me to wait and see what comes out of these new trials.

I decided to wait.

erjlg3 profile image
erjlg3

How are you doing Bill?

🌼Jackie

Lombardi24 profile image
Lombardi24 in reply toerjlg3

Hey Jackie. Ok. Thx. 3 more weeks until I seed onc for blood work to see if Lynparza is working. Not sure why they don't incorporate another treatment besides Lupron? Why they don't try...following radiation and a drop in PSA...combination therapies to hit cancer while the tumors have been reduced.

erjlg3 profile image
erjlg3

Well I sure hope, wish and pray that Lynparza is working wonders Bill! Only standard of care maybe? Why they don't... do more? It's upsetting. Keep on keepin on...🌼 You matter.... you ALL matter🌻

🤗Huge hugs,

Jackie

paulofaus profile image
paulofaus

Hi Bill, How are you doing now, have you found out whether the Lynparza is helping?

Lombardi24 profile image
Lombardi24 in reply topaulofaus

Hey paulofaus. Not sure yet. PSA has dropped substantially, but not sure if it's due to cancer die off post radiation or Lynparza or both. Scans in April should reveal more. How are you?

paulofaus profile image
paulofaus

Hey Bill, great news on lowered PSA, I'd take that. I became castrate resistant in Nov and I've moved on to xtandi. I'm meeting with a doctor today about Lutetium 177. Im feeling good, Cheers Paul.

Lombardi24 profile image
Lombardi24

Glad you're feeling good Paul! What is lutetium? Have you read about antiinflamatories?

paulofaus profile image
paulofaus in reply toLombardi24

Hi Lombardi24, I have read some things about anti-inflammatories, but nothing specific took my interest. I have read mixed reports about the benefits of Tumeric, Krill oil, MSM and whether they make any real difference. Lutetium 177 is a new class of Nuclear medicine, which you take via infusion (like chemo). The compound bonds to PCa cells and hits them with an alpha particle hopefully killing the cancer cells and leaving the healthy cells alone. Some guys get no response at all, but some guys get very good results.

Lombardi24 profile image
Lombardi24 in reply topaulofaus

Is it like xofigo?

paulofaus profile image
paulofaus in reply toLombardi24

Yes, but Xofigo only works on bone mets, Lu177 can work on sift tissue also.

Lombardi24 profile image
Lombardi24 in reply topaulofaus

Thx paul

Lombardi24 profile image
Lombardi24 in reply topaulofaus

Paul... what's the news re: LU177? Is that even available in US outside of trials?

paulofaus profile image
paulofaus in reply toLombardi24

Hey Bill, I don't think so. From what I understand, Australia and Germany are leading the world, followed by New Zealand. I do believe there are several clinical trials in the US, but I'm not sure how to confirm that. I';m trying to get onto a clinical trial here, but I haven't been through the assessment process yet, this should happen over the next few weeks.

Lombardi24 profile image
Lombardi24 in reply topaulofaus

Where is the trial?

paulofaus profile image
paulofaus in reply toLombardi24

I'm participating in PERTH. anzup.org.au/content.aspx?p...

Lombardi24 profile image
Lombardi24 in reply topaulofaus

Thx, Paul.

greatjohn profile image
greatjohn

Just read your bio and posts...and your path seems so similar to mine. I only did Lupron and 3 months later started Taxotere. With it finished, SCANS LOOKED GREAT & PSA was down...2 months later it was up...THEY DECLARED ME CASTRATE RESISTANT IMMEDIATELY..AND now I'm already scheduled to start Provenge and Xtandi this month. I feel like an in the PC Express lane.🙁

tallguy2 profile image
tallguy2 in reply togreatjohn

I think I am following your path. Please keep posting and I will do likewise.

Precision medicine is our best next attack on APC (after chemo and ADT fail).

I plan to visit MDA or MSK this fall.

Lombardi24 profile image
Lombardi24 in reply totallguy2

If you visit MSK ask to see Dr Karen Autio. She's my med onc. Very thorough.

tallguy2 profile image
tallguy2 in reply toLombardi24

Thank you.

Lombardi24 profile image
Lombardi24

I feel the same way. Things work for a short period and then cancer is on the march again.

erjlg3 profile image
erjlg3

How are you doing Bill?

I hope you're treatment went well and you're feeling good :)

😊Jackie

Lombardi24 profile image
Lombardi24

Hey Jackie!! I'm doing well for now. Cancer is responding to Lynparza and PSA has dropped. Thanks for checking on me. ❤

Lombardi24 profile image
Lombardi24

How is Elgie doing???

erjlg3 profile image
erjlg3

Hi Bill!

Elgie is doing fairly well. He continues to be fatigued most of the time but it could be so much worse. I'm glad Lynparza is helping and your psa is dropping. I'm always hoping and wishing for a cure or more new drugs that help for everyone. Great to hear from you.

Hugs,

🙂Jackie

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