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Anyone with BRCA 2 mutation taking Olaparib?
My Dad was detected with pancreatic adenocarcinoma last year in January 2023. He had Whipple surgery in August 2023. He completed 12 cycles of FOLFIRINOX prior to surgery.
He had a recurrence in liver after few months in March 2024. He did 3 cycles of gem-abraxane. On gene testing we found out he his having BRCA 2 mutation for which Olaparib was recommended by our physician.
He is having extreme weakness now. Is it the side effect of olaparib?
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I know of two individuals taking the PARP inhibitor Rubraca (Rucaparib) which is a biosimilar to Lynparza (Olaparib)-myself for a (g)BRCA2 and a friend for a (s)BRCA2. I am on this PARPi over 9.5 years and the friend was on it for 5 years. She went off it a few months ago because her metastatic disease was eradicated and no longer has a risk of recurrence. I may be finishing it in October at the 10 year mark as oncologists have considered me cured of metastatic disease. They left the choice up to me.
PARPi’s are known for suppressing bone marrow and reducing the output of RBC’s. It can also affect WBC’s and platelets. In some this can happen earlier in the course of treatment. It took six years before symptoms of anemia leading to extreme fatigue occurred. My RBC level dropped to 7.5 g/dL. The fatigue was considerable.It was handled by one dose reduction.
and seven week pause where the counts as well as eGFR and creatinine return to improved values. My RBC levels will slowly slide downward over six months and rather than another dose reduction, a six or seven week pause every six months is used to give the assault on the bone marrow a rest. That takes care of the anemia and fatigue.
I am monitored every six weeks with a CBC, chem profile and physical exam. I am the longest confirmed former pancreatic cancer patient on this PARPi and possibly the longest on any of the PARP’s currently being used.
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3 Reactionsstageivsurvivor, Was your cancer pancreatic cancer? Also, was it ductal cell pancreatic cancer or acinar cell pancreatic cancer? I'm presently in a clinical trial at the NIH in MD for use of Olaparib for my acinar cell pancreatic cancer. There was some fatique when I first started on the Olaparib about 6 wks. ago, but it has dissipated some now. My RBC and WBC were normal in the 2 blood tests I've had at the NIH so far. Creatinine was slightly out of limits, but increasing water intake per my NIH doc's instructions seems to have cleared that up. Anindita, it is my understanding that without having the BRCA 2 mutation Olaparib is ineffective. There are very good reasons for that but you'll have to do some research on the subject to understand it. I'm a retired airline mechanic and don't consider my qualified, or it being proper, for me to try to explain the way the drug works here. I was hanging on by my toenails to get the gist of it when my NIH docs explained it to me. I am wishing good luck and healing to your Dad.
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2 ReactionsI know of the trial you are in conducted by Christine Alewine MD at the NCI. I had a mixed tumor type of predominately acinar cell type with PDAC cells also found. The dysplasia of the acinar cells was poorly differentiated, high grade, 11/22 lymph nodes positive, perineural and peripancreatic invasion of the soft tissue. Also evaluated as PanIN1. Doesn’t get much worse than that.
It is well documented that PARP’s transiently and not permanently affect eGFR and creatinine. I drank copious amounts of water prior to each blood test to try and lower it. It had nothing to be with needing more hydration. I’ve been on Rubraca almost 10 years and in the few pauses I had, my eGFR and creatinine values have always returned to normal. It has not impaired my kidney function and I note my care team are concerned when those parameters are increased while in the drug. It causes more creatinine to be retained. Sometimes patients are incorrectly classified as stage IIIa renal disease in a rush to judgement.
Three of the most experienced oncologists in the country treating aBRCA mutations in pancreatic cancer are Eileen O’Reilly MD of MSKCC and Kim Reiss Binder MD at PennMedicine who have treated several ACC patients and Susan Domchek, MD-head of the Basser Center for BRCA at Penn Medicine and conducted the first pilot study of using a PARPi (Olaparib) in pancreatic cancer patients. All three are very familiar with my case and have been following it for almost 10 years now.
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4 ReactionsThanks a lot.!! @56pan
I wish you to be in best of your health soon..!! 🙂
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1 ReactionThank you very much @stageivsurvivor
I wish you a long and healthy life ahead 🙂
Yes, thanks very much for your time and informative answer stageIVsurvivor. I can only guess that the slightly high creatinine on my blood test a month ago was not related to the Olaparib since the extra water I drank seemed to bring it back to a normal level. I'm heading back up the NIH tomorrow and will have blood tests and a CT scan on Wed. Yes, Dr. Alewine is in charge of my clinical trial there.
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1 ReactionDid either you or your friend take a chemo pill after infusions or did you go right to the PARP inhibitor?
In my case, my oncologist was going to put me on Xeloda after my 12 chemo sessions. He told me that the body converts Xeloda to Fluorouracil and Fluorouracil was one of the meds. in the Folfirinox chemo treatments. And was responsible for terrible mouth sores. I suffered from those and I was dreading starting on Xeloda due to this side effect. I found the NIH PACC clinical trial using Olaparib and talked it over with my oncologist and he was very much in favor of me trying to get accepted. At least there are no mouth sores on Olaparib. Just returned from the NIH today and the CT scan they did yesterday was good news. I've still got a long way to go if the med. continues to do it's job.
My daughter is finishing her last chemo infusion and will start taking Lynparza. She has learned that the costs is $5,000 a month AFTER insurance. She is being enrolled in copay assistance which will last for 5 months. Is this a case of your money or your life, and then when one runs out of money, they just die? Is this how this works?
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1 ReactionThis is likely not helpful due to how rare the disease is, but in the unlikely event your daughter was undergoing chemo for acinar cell pancreatic cancer, the NIH clinical trial for that disease is still looking for volunteers. This is what I was told on my last visit to the NIH. The Lynparza is free of charge if she is accepted into the trial.