I went through two rounds of chemo for peritoneal CA. A few bumps along the way with a blocked ureter. A stent was inserted and I ended up in ICU with a kidney infection. (Sepsis). All good now in that regard except that my kidney function has been affected - they don't seem to be too concerned about it though.
Now my oncologist has prescribed Zejula 300mgs. a few weeks ago. She texted me to stop it yesterday as my platelets have dropped. So, I had an IV infusion of platelets today and another round tomorrow, Friday. She said that she wants me to be covered over the weekend.
The plan is to take some time off and then start back on a reduced dose. I had no side effects with the drug at all.
My question is: have any of you ladies had similar in regard to dosing?
All the best from Down Under - Spring has sprung!
Jill
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Jenjill47
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Hi Jill. I was on Zejula 200mg but my bloods tanked, so put on 100mg which unfortunately didn't work for me. On another forum many ladies say they can't tolerate 300mg, and one said her oncologist told her very few ladies can. 200mg might be the answer for you. Good luck x
I was started on 200mg as my onc said few people tolerated 300. Been on it since March with insomnia the only troublesome side-effect. That might be a more tolerable dose for your body. Hope you get restarted on it as soon as your body can take it. I find it gives me great hope. Best wishes x
I hope that your are currently feeling well and things turn around with the reduced dose. My wife and I are also in Aus - Gild Coast, and have gone through a very similar experience.
Blocked kidney at initial diagnosis requiring stent, then during treatment a four day hospital stay with high fever and sepsis.
My wife is currently undergoing 2nd line chemo for a first reoccurrance.
Initial treatment following diagnosis in Oct 2020 for Grade 3 C high grade serous required 3 cycles of carboplatin and taxol followed by full debulking across multiple areas (11 hours in surgery) then a further 3 cycles of chemo.
PET scan back in March 2021 showed no detectable tumours but CA125 never dropped below 45 and oncologist seemed to be waiting on signs of a recurrence with checks only going out to monthly vs the proposed 12 week wait and watch which was discussed prior to March scan.
The last scan back in Sept 21 showed sign of two lesions in pelvis and one met on liver. Now back on monthly carboplatin and Caelyx.
We are hoping for icon9 olaparib trial and have been told that naraparib isn’t available.
How did you access the naraparib within Aus as we were told it is not available.
My wife is BRCA negative and is currently trying to get off label meds to try Jane McLelland prtotcol.
2nd cycle of carbo and Carly has been delayed last for the last two weeks due to very low bloods for white, red, platelets, neutrophils and haemoglobin, recovered a bit this week but given injection for neutrophils this week to hopefully get back on chemo reduced dose next week.
We are looking at every option including full supplements from naturopath but our savings are going down quicker than what’s coming in with approx $2-3k of fees etc every month.
Treatment protocol in Aus seems very regimented with not many options and the chemo route seems to hit general health hard together with tumour reduction.
We are trying to understand how to reduce tumour stem cells to hopefully prolong or prevent reoccurrence while the chemo goes after the tumours. We also think my wife as a chronic autoimmune deficiency as she has had multiple issues and allergies, sensitivity to sunlight causing skin hives and random unexplained selling of her lips after eating.
Apologies for the long winded response but we would be more than happy the share where we are at or answer any questions if you think it may help you or give you some other ideas for treatment options - hopefully we aren’t chasing shadows as our oncologist seems to think the outcome can’t be effected with any non clinically proven methods, but chemo only seems to target the tumours and not what causes them in our thought process.
Thoughts are with you and everyone else who is going through treatment at the moment,
Hi Steve and Joanne. Your experience is remarkably similar to mine! My surgery was only 6 hours! I'm also BRACA negative.
Zejula (Nariparib) is most definitely available and government funded in Australia. When I started on it a month ago my oncologist told me that she had to consult with the drug company who gave her approval to go ahead at minimal cost. I think she mentioned that it was about to be approved (full payment covered) around November, but I'm confused as I saw a post online that it is already covered by Medicare.
The only requirements were that I had to have been through two rounds of chemo. I can't think of any others.
This article might be useful for you both.
It is certain is worth pursuing with your oncologist.
It is distressing that you have to do your own research.
Please stay in touch to let me know how you are going. You can always send me a private message.
I tried the link again - when the message comes up just click on that and the full article will come up. Let me know if it works for you. Enjoy the Spring weather!
Welcome to the little gang. I have been on Niraparib now for nearly 4 years, so can hopefully answer many questions that you may have.
It sounds like you have been having a rough old time with treatments. I had a few breaks/intervals from it when I had infections or low platelets, so yes I would say this is very normal.
One thing I would strongly suggest is that they get the dosing right for your body/weight. I was initially on 300mg, and then 200mg and kept having low bloods, platelets etc.
I eventually went on to 100mg (which is just as effective) and hey presto! Life changed! I stopped getting infections, I stopped going into hospital. My blood levels stablised. I started walking and then sport again. I started travelling again.
So..it might be worth mentioning this to your DR if you continue to struggle on the full dose.
Please do PM me if you need a chat, or a bit of support. I would be so happy to talk to you.
Love and healiing energy for now, Nicky xx ( from the rainy UK!)
Oh thank you so much Nicky! You have made my day! My oncologist did say that it would be a balancing act. I see her weekly following my blood tests. I see her tomorrow. I suspect that she will give a week or two break and then start back on a lower dose. I look like I have been in a boxing ring with all the bruising. Of course my poor husband Dan is copping a lot of jokes about domestic violence!
It is wonderful that you are doing so well and I'll most definitely PM you to keep you up on my progress.
Big hugs from sunny South Australia. (About time though - it has been a cold, wet winter).
We had exactly the same on the higher doses! I was bruised all over. Maybe mention it to your Dr and have a good chat with them. Take care and let me know how it goes xxx
Hi JillYes - a similar thing happened to me. I started on a dosage of 300mg daily of Zejula (Niraparib here in UK), in May 2019. After a couple of months, my Hb count dropped. Several blood transfusions later, my dose was reduced to 200mg daily. I’ve been absolutely fine on that. I do hope a lower dosage will do the same for you - good luck!
Thank you so much for your encouraging post and good wishes. You and Nicky have really made me more optimistic about this treatment. I don't know why it has only just been approved by the Pharmaceutical Benefits Scheme here in Australia. Otherwise it would have cost $13,000 for 6 months! Way out of our league!
Hi, I started it in April 2018. I started at 200 with no side effects at all. Then they put me up to 300, but after a couple of months my bloods crashed and I had to take a month off it, after a blood transfusion, and then back to 200 which I am still on today. I think it is a balancing act to get it right but lower dose isn’t an issue! Good luck x
Thank you! I saw my oncologist today and my platelets have increased marginally. I had another platelet infusion and see her again on Monday. As you say, it is a balancing act! I suspect that I will need further infusions and then a break for a month or so. By the way, I'm a crazy dog lover too.
Good luck, my nurse says steak and spinach!! Also I think papaya is supposed to be good for bloods. I have a black Labrador, didn’t think I’d see his 3rd birthday but he is 7 next month….he got me through it all!! x
I love Black Labs. My Dad has one named Dougie. He was a failed guide dog! I can see why he got you through this. Mine is a Tibetan Spaniel. Guardians of the Buddhist priests. They love to sit up high and observe the world!
Was put on Zejula for 1-2 months. Platelets or Hemoglobin dropped. Had Scan yesterday. Have an appointment next Wed.A bit worrisome. Had chemo work then stop working. Prior to Zejula was on Keytruda for about a year. Did work but after a while it stopped as well. Hopefully some good news in upcoming scan.
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