Lynparza - warning!

[MyDad76]

I'm writing this in pure agony in hopes, that it might help someone in the future.

My father is castrate resistant and when Xtandi stopped working, his MO put him on dexamethasone + abiraterone + Lynparza (olaparib). This combo is now registered in European Union even for men without BRCA mutation (blood test for mutation in our case was negative, tumor test for mutation is not available).

Therapy started on January 26th. Before this his blood counts except for elevated PSA were totally normal, he took frequent walks, had no pain. We had some scary days, but they resolved on their one.

After starting with the therapy my father became very fatigued. On March 7th blood panel test were carried out and while lymphocytes were low, his MO did not find them alarming and we continued with unreduced dose. Test results were:

lymphocytes: 1,16 (normal range 1-10 - 3,50)

lymphocytes: 13,8% (normal 20 - 40%)

My father then had infection - blood in urine. He had that in the past and I did not think much of it - he has urine catheter. It was treated at local health center and blood test were done (March 26th), but in our system when GP orders blood test you don't get the results in hand, they tell you in person or over the phone if anything out of the line. I was told he blood is ok. Clearly, they have focused on hemoglobin an pallets.

My father got literally crushed, slept most of the day. In last days of March his appetite went down to almost non existing and daily changes were drastic. On April 4th we still manged to go to local Health center and his GP casually mentioned blood test from March 26th. She then printed the test results. I had one glance at them but when we got home I nearly fainted.

lymphocytes: 0,26 (normal range 1-10 - 3,50)

lymphocytes: 3% (normal 20 - 40%)

Hemoglobin and erythrocytes slightly low

There were other remarks as well:

presence of howell jolly parts in erythrocytes,

mild anisocytosis of thrombocytes

mild anisocytosis of erythrocytes

mild polychromasia of erythrocytes

Mind you, this was on March 26th, and we did nothing, we continued with Lynparza till April 4th. God knows where we are today (April 6th).

My dad is now bed ridden with infection. 2 days ago he still managed, with enormous fatigue and effort to go to local health center. Yesterday morning he could barely stand up. Then not anymore. He is bed ridden with fever. I called doctor, of course. Given his state no aggressive treatment will be done. My dad is approaching end of life.

The point I'm making is: while Lynparza can work wonders for some, it can also shut down your body completely. Though I have told his GP that he was on it and that it can have great impact on blood counts, she did not pick anything alarming from tests on March 26th or perhaps thought it is how his disease is evolving. I did not get the test result and thus did not inform MO. Perhaps stopping Lynparza on March 26th would make a comeback still possible.

If you are on Lynparza, or I guess even worse, Lynparza + additional hormone therapy (steroids are know to lower lymphocytes as well) please do not rely solely on monthly test results. If you feel drastic change, don't necessary attribute it to disease, it could be side effect from treatment. Please have tests done, demand to get them in your hands and have MO evaluate them. Your GP or urologist might not see the warning signs in time.

Please be kind to me. Please don't tell me what we could / should have done. I blame myself enough and I'm in pure agony. But I write this in hopes that it might help someone in the future.

[WisdomSeeking]

Thank you very much for the warning. My dad has failed Xtandi as well and now we are considering what to do next. We too live in Europe. This information really helps.

You are a great daughter and person, your dad is blessed to have you.

[MyDad76 in reply to WisdomSeeking]

Thank you for your kind words and all the best for your dad and your family.

[NickJoy]

Thank you for letting us know this valuable information. It is very good of you to remember others at this difficult time. I very much hope your Daddy's situation improves.

[MyDad76 in reply to NickJoy]

Thank you for your kind words. Sadly my dad's situation is unlikely to improve. His body is shutting down, to tired and whipped out to fight one infection after another with zero lymphocytes. I looked today at photos from January, how alive he still was. Looking himself. Today he is without the strength to sit in bed if I do not support him the whole time. He can not move without me turning his whole body weight. His condition I fear is beyond repair.

[mrscruffy]

Lynparza is a tough one. I have been on it since December of 2023. Only issues is low blood cell count. MO reduced dose from 600mg to 450mg so as to improve blood. I find it odd that it was given to someone that isn't BRCA2 positive. As an added bonus my MO was part of Lynparza development team and watches my blood results like a hawk every 4 weeks. Hope for a quick recovery for your father

[MyDad76 in reply to mrscruffy]

In European Union (central registration for all EU countries) it is registered also for:

"a type of prostate cancer that has spread to other parts of the body (metastatic) beyond

the original tumour and no longer responds to a medical or surgical treatment that lowers

testosterone. Lynparza is used in combination with another anti-cancer medicine called

abiraterone, together with the steroid medicine, prednisone or prednisolone."

ema.europa.eu/en/medicines/...

So not only Lynparza, but in combination with abiraterone and prednisone. I come to think this can be far more damaging to the body then docetaxel. But it is easy to be clever in retrospect.

Sadly my dad is unlikely to recover. His body is shutting down.

[addicted2cycling in reply to MyDad76]

:,0(

[mrscruffy in reply to MyDad76]

Sorry to hear that I will pray for him. My doctor took me off Abiraterone and prednisone when starting Lynparza. Weird how different medicine can be

[Ian99 in reply to mrscruffy]

Hi. I am about to start Lynparza, having recently been informed I am BRCA2+. Like you I was asked to stop Abi and Pred. Continuing ADT.

I can see blood counts are key. May I ask how you’re doing and if you have any recommendations. I work out and play golf and eat well. Trying to do all the right stuff.

[mrscruffy in reply to Ian99]

Keep doing what you are doing. My blood cell counts are monitored carefully and have a blood test every 6 weeks. MO was worried about damage to bone marrow so he put me on 3/4 dose. PSA has risen a bit from .17 to .97, my next appointment is in a couple of weeks and will check PSA and adjust as necessary. All in all I am happy with Lynparza and how quickly it works. The cost is insane even after insurance. I applied to Astra Zeneca for help and I made too much for one program but they had another program for me. If you find yourself in this position contact AZ they were super helpful and it is an easy process

[MarylandGuy]

I will keep an eye out. The drug has reversed my increasing PSA and it’s now going down. Two months so far bloodwork is still ok too.

[Spyder54]

Thank you for sharing.

Best of luck for some improvement.

Mike

[Har036]

My husband has an ATM mutation and was started on lynparza September 2020 when abiraterone failed after four months. His blood counts have always been low even before prostate cancer which prompted his doctor to do a bone marrow test which was negative for anything. The end of January his lynparza was stopped due to his neutrophil count. His neutrophil count was back into the normal range within a month of discontinuing the medication however his calcium levels rose as well. My husband has Mets in sacrum and hip and MO felt that this may have become active while off the lynparza. He received his Aligard and zometa for the high calcium and was restarted on lynparza. First blood test showed his neutrophil and other levels were improving still. Over the last week he has extreme exhaustion. I called hemotologist and was told that it was due to restart of lynparza but I am concerned! He sees the MO again on 4/10.

He was on lynparza for 36 months with good success. Some medications work better for some while being detrimental to others. There are SOC and lots of prayers seeing many of the warriors through. I pray that you find something that works well for your dad and his CBC recovers from the treatment.

[Puckcancer]

I have been on this combo for about a year now and my PSA has been undetectable but I have been more fatigued since starting it. That is one of the side effects of this combo.

[MyDad76 in reply to Puckcancer]

I understand it can work very well for some. But I wanted to share our experience so others would be careful and react in time. We didn’t.

[Cateydid]

You are a warrior, just like your dad!!! You have done the very best you could with the knowledge you have.

I pray that no one on this site has the audacity to criticize anything you have to say or do!! We who love someone with prostate cancer deal with all the ups and downs of their disease while managing all the other facets of our lives, too.

My heart aches for you…..and for me……and for all the patients and caregivers affected by this terrible disease. Wishing you peace and comfort during this difficult time.

[MyDad76 in reply to Cateydid]

Thank you for your kind words, means a lot. My dad died yesterday

[Cateydid in reply to MyDad76]

Oh no!!

I’m so sorry to hear this news. Know that you were a blessing to you dad. You were lucky to have each other on this journey.

I pray that your heart heals with wonderful memories.

[FrostGyre]

Your dad has been poisoned, poisoned, and poisoned some more, even before coming into contact with the "medical professionals".

His best chance is a simple diet consisting of fatty meat (beef is best), salt (rock, sea) and water. Tell him to eat as much as he can. When he gets his appetite back and (if he) has cravings for carbs/sweet things, make sure he eats more meat.

[Kevinski65]

Would it help his blood counts to get a growth hormone?

[fast_eddie]

Don't feel responsible for your father's condition. You aren't a doctor. You didn't recommend that medication. Take care of yourself and stop beating yourself up. You did nothing wrong.

[Meshel48]

Thank you so much for your share my husband and I were in Europe and he got really sick and no one was available to answer our questions but I remember your father and your advice I had him go off his lynparza he had a fever and was weak and I felt we needed to treat the illness not the cancer at the moment . Especially after what happen to your dad. He was so lucky to have you!