I have started a clinical trial which is based on 3 weekly cycles of Pembrolizuma(200mg once every 3 weeks) + Olaparib(600mg per day).
So far I feel that I may not be tolerating the dosage rate of Olaparib so good as I don't feel as well as I did before the trial and I am experiencing a lot of the side effects listed in the trial protocol.
My questions to other men who have tried Olaparib are what was your dosage rate, what were your side effects, what was your experience of this drug as far as disease progression is concerned?
Thanks everyone
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DunandDusted
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I have been on Olaparib for 2 weeks (600 mg per day). Definitely harsh side effects.
I have increased fatigue (as if I don't have enough of that already!)
My taste buds are affected (losing sense of taste somewhat).
My digestive track is in turmoil - nausea, yellowish stools occasionally laced with blood. I have vomited once and had diarrhea once.
Not sure how long I can hold out on this drug.
My medical team have been informed. No change suggested as yet, so I don't know if there is an initial upheaval that rights itself over time. They did put me back on 5mg prednisone and anti-nausea meds.
I'm on the same combination for the last 6 months (outside of the trial). It feels manageable after some adaptation period. I started in June immediately after radiation of brain and spine. Dosages are 400mg Keytruda every 6 weeks and Lynparza 300mg x 2 daily.
During weeks 2-6 I experienced a lot of different side-effects: extreme weakness, tiredness, sleepiness - I'd literary spend entire days in pseudo-sleep state. Then a week of almost non-stop strong fever. I had to dial back Lynparza to 300 mg for a couple of weeks. Then there was weeks of nausea, dizziness, food aversion and lost 30 lbs. By October most side-effects subsided and more manageable condition has set in.
I think in my case it was aggravated due to immediate radiation. Just go through patiently, vary dose when needed and it should get better.
I have not been on the trial long enough yet to have my first MRI and Bone Scan. That will happen in late January. I will put up with the side effects and feeling unwell until then as the Oncologist should be able to see some change/no change in my mets over base line by then and we can make some decisions re continuing treatment after that.
You say you have been on Olaparib for 6 months. Have you had any scans to determine the effectiveness of Olaparid since you started?
Interestingly my Oncologist says that the trial protocol keeps my PSA (which is taken, along with a lot of other blood tests at the end of each cycle) from not only me, but him, and the trial support staff as well.
The logic here is that decisions about disease progression and or treatment efficacy are based solely on the scans and no one is unduly influenced by the PSA. I am comfortable with this, however I have been warned off about going off to a GP on the side and requesting a PSA test.
I suppose my question to you, since you are the only reply I have had, that has been on Olaparid outside of a trial is;
Hello DunandDusted, After my genetic test it was determined that Keytruda was the next course of action. I am not sure of the technical reasons other than mutated cell receptors. I experienced many side effects including itching, fatigue ( zombie like), and shortness of breath. It didn’t help that l had radiation treatments to my lower back at the same time. However, miraculously, my PSA is now negligible, no increase in hot spots in recent scans, the side effects stopped almost instantly in one day, other than the shortness of breath. If it wasn’t for the shortness of breath, I would say I’m in pretty good shape. I would like to get on a 6 week cycle with the Keytruda instead of the 3 week cycle as I feel a bit constricted but I should thank the Lord for what I have. God bless, brother, on your journey.
I'm bit outlier here, hard to compare. My cancer mutated and settled in spinal fluid and brain - very rare case for PCa. I have now what's called Leptomeningeal Carcinomatosis ncbi.nlm.nih.gov/books/NBK4...
It started in May, expected median survival after radiation was announced 16 weeks which I beat by a good margin, 6 month now. Since starting Keytruda and Olaparib my PSA stuck at below 0.1, the lowest I ever had, although it dropped to 0.1-0.3 range months before (I have intact prostate totally cleaned up during previous chemos) PSA long time is not my reliable marker: symptoms and scans are better. So I have excellent control of original cancer form everywhere but total LC disaster in the CSF and brain. This month bra cancer started progressing again, I lost second hand, and my only option is intrathecal chemo. I scheduled for brain port installation on 29 Dec.
You know I am well aware of the fact that even after billions of dollars spent on research of prostate cancer the cancer remains at least one step ahead. No matter what therapy is thrown at it, it always comes back.
To find that you have control of your cancer everywhere due to previous therapies and with a PSA of <0.3 most men would be pretty confident that the beast has been beaten.
So mate I am astonished that, in spite of success in the rest of your body, your story includes an LC in the CSF and brain. I extend my best wishes to you for your procedure on 29th Dec. I took some comfort from your experience with Pembrolizumab + Olaparib and I thank you for sharing that information.
Yep, the jump from the seeming victory to the grim news of LMC was way too high and probably broke a few of my mental bones. This summer I was going to celebrate success of previous two years fight. When my feet and hands started to go numb in a hurry, clinical team was taken by surprise as nobody expected such turn of events.
I'm glad was approved for Keytruda + Olaparib combo. Everyone responds and reacts differently but I find it quite tolerable. I hope it will work eventually in the brain.
I wish you success with your treatment which is very possible as many report here.
Hi DunandDusted,Why do you think that your side effects are from the Olaparib specifically and not the Pembrolizumab? Keytruda can have a range of effects that might mean it is working.
When they did your genetic testing where did they find the mutated gene, in your germline or somatic? If for example they found a BRCA2 mutation or loss in your germline then that could explain your side effects. The PARPi will attempt to prompt cell death of all faulty BRCA2 cells.
That might explain the toxicity.
If your BRCA2 loss was somatic then the cell death should only happen in your tumor.
That might lead you to believe it is the Keytruda.
Have been on Olaparib for 22 months so far. 400 mg 2x daily. BRCA2+. MSS and low tumor burden rules out Keytruda combo, or by itself, as an effective option.
PSA had been undetectable for 18 months before rising to 1.11 so far. Had Auximin scan 2 days ago. Just one small spot on lung found. Radiologist said this could be the cause of PSA rise, and should be zapped.
Having 18F PYL PSMA scan next week as part of trial at Stony Brook. Will compare the 2 scans, and expect PSMA to be more sensitive.
Side effects of long term use of Olaparib have been anemia, constipation, headaches and fatigue; all tolerable.
I have a CHEK2 and NBN mutation and appear to be a candidate for Olaparib too should that time come. But like you I’m hesitant due to reported side effects. Dr. Sartor says that the benefit for someone like me is “conjectural “.Meantime I have some different treatments planned should my cancer wake up.
Sartor says if I become castrate resistant and I reach a PSA of 0.5 he would arrange for a PSMA scan to see what we were dealing with. Then depending on what is found on the scan we can address hot spots with SBRT. At that time I’d likely also undergo Provenge therapy which he supports. He is also overseeing an arm of the Lutetium trial so that could be an option as well as radium 223. He also is open to BAT to reactivate Xtandi. Jevtana is another option that has been shown to reactivate Xtandi but I’ve been through chemo once already and not a fan.
Hi Nalakrats,I took part in the Triton 3 trial with Rucaparib. This trial should be reporting this year. It worked for 9 months halving my tumor size ( diameter which translates into roughly an 80% plus decrease in volume). My PSA reduced by >50%.
I had a BRCA2 loss in a somatic test but no loss genetically. Also had PALB2 mutation genetic and somatic.
I’ll look into it, thanks. Sartor is also one of the docs who is willing to use BAT for this purpose. It doesn’t work for everyone but some he’s treated have had success. Sure would be nice to have a boost of T. We’ll see when that time comes hopefully that won’t be for a while and my cancer continues to enjoy it’s slumber.
50 infusions of Pembrilizimab and finished with all treatment. For scNEPC..long term Durable Clinical Remission NED..just 6 month clinic and blood work going forward..tolerated Pembro fine.. Oliparib is still on shelf for me if needed so can't comment there.
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