Experience with Lynparza (olaparib)

[johngwilk]

My oncologist is prescribing the PARP inhibitor Lynparza (olaparib) for me. This should be a match for my CDK12 DNA repair mutation.

Does anyone in the group have experience with this med?

[RalphieJr64]

I've been on a clinical trail of a daily combo of olaparib (400mg) and cediranib (30mg). of nearly 8 weeks now. Blood work is done every two weeks. I have to monitor my blood pressure twice a day. So far those parts are coming back favorably. However it is doing a number on me regarding extreme cramping along with diarrhea. I just had a bone scan as well a pelvic scan done. Those are the real tests to see if the tumors are responding to this new treatment. I meet with my oncologist on Monday. Luck is a major part of any advanced stage cancer. Best to you.

[johngwilk in reply to RalphieJr64]

Same to you.

[HopingForTheBest1 in reply to RalphieJr64]

How are you doing now, since being on Olaparib?

[RalphieJr64 in reply to HopingForTheBest1]

I've been on a combination trial of olaparib and cediranib. I had bad gastrointestinal side effects with the cediranib but no problems with olaparib. I started this trial in June. My MO lowered the dose on the cediranib recently, so hopefully these horrible side effects will subside. Anyways it is giving me some good results. PSA is at 0.05 and the metastasis involving lymph nodes, liver mass and pelvic area have shrunk. But I know this is a rollercoaster and it could change in a second. I did read some of your postings. I'm on SSDI, and had no problems. If you have stage 4 prostate cancer with metastasis it automatically qualifies you. I don't know your complete story. I applied and the next day I was approved and also received a retroactive check from the date I was diagnosed. I'm 65. I would much rather had continued working and retired with a lot more annuity. It is what it is unfortunately. This type of cancer as you already know, is debilitating.

Ralph

[HopingForTheBest1 in reply to RalphieJr64]

I believe the definition for SSDI had recently changed whereby one needs to have "visceral" metastisis in order to automatically qualify, like the liver as you have. I was initially denied in December as pelvic bone metastasis doesn't fit the definition, but am trying again through the "reconsideration" process. If this doesn't work then on to an ALJ review which I have been told is a more liberal process, and I have a better chance of approval.

Good to hear that Olaparib is working for you. I assume you are BRCA2+ as I am. When in the course if your treatment/journey was it started? Do you know how the other trial participants are doing as well?

[Moespy in reply to HopingForTheBest1]

Hi HopingForTheBest1,

I was turned down for SSDI in November because they did not find the mets on a CT Scan. I received a PSMA Pet Scan that found the mets in my pelvic lymph nodes and filed my appeal within the 60 day allotted time frame. I was told by an SSDI rep that this will be a slam dunk now that initial treatment failed (RP in 2011, IMRT Radiation in 2015) and the cancer is now back and metastatic. My question is where did you see that the rules have changed to have visceral metastases? This of course is very disturbing and if true I am very frustrated by the timing. Thank you. Jim

[HopingForTheBest1 in reply to Moespy]

The SSA's Blue Book provides the definition. It can be found online.

[Moespy in reply to HopingForTheBest1]

Appreciate it.

Looks like ADT failure with mets with qualify. I have not had ADT yet but have mets so I think I will be turned down again.

Thanks for pointing me in the right direction.

[RalphieJr64 in reply to HopingForTheBest1]

There are a couple of gents that I correspond with that were taking Olaparib. They were both on for approx. 9 or 10 months. Unfortunately both stopped working. I've been on for 8 months now. I get my scans done at months end. All I can do is continue praying that it continues to work. Can I ask your age? SS treated me with exceptional kindness. They were very sympathetic and obliging. Everything was done by phone. They contacted for my medical records and like I said was approved the next day. Well just like your handle name, Hoping for the Best for you.

Ralph

[HopingForTheBest1 in reply to RalphieJr64]

I am 64. Wishing the best for you as well. We are all in this together.

[elainea53 in reply to RalphieJr64]

Where are you in the trial? My husband in it at mdandersen

[DenDoc]

John,

I am getting a PET scan today and results next week. If stable I will get a treatment holiday. If not, I will start Olaparib as my next drug based on my tumor's genetics as well. My PC has progressed into a mixed tumor but mostly small cell, neuroendocrine cancer and it is located in the lining of my left lung.

Please keep us up to date on your progress and course since there have not been many using this drug on the site.

Hope you have good outcomes.

Bob Lederer

[vandy69]

Good Friday Morning johngwilk,

I have been in this battle for six years (please see bio for complete treatment history).

After one Guardant360 liquid biopsy, it was revealed that my cancer had an ATM defect, so Dr. Charles "Snuffy" Myers could prescribe Lynparza. It worked for me for about 9 months and I don't remember any significant side effects.

May sure your drug plan will cover it, because it is extremely expensive.

Best wishes. Never Give In.

Mark, Atlanta

[johngwilk in reply to vandy69]

Thanks. My oncologist’s pharmacy billing dept. worked on getting approval, but I just received a non-coverage letter from CVS. I have a visit scheduled this morning. If the co-pay is $664, I’m good. If the charge is around $14,000, there’s work to do.

[vandy69]

I have Humana drug plan as Part D of Medicare and their Speciality Pharmacy covers it. Once I get to the Catastrophic level, I pay a 5% copay.

Mark

[johngwilk in reply to vandy69]

I got another letter today saying I’m covered. My doctor appealed the initial denial; it was reversed within a day. It’s so helpful to have an excellent doctor and major cancer treatment center working on my behalf.