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Niraparib Zejula
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Hi of@flory
I started at 200 mg and crashed within 3 months. Hemoglobin plummeted. Went off the drug for 3 weeks and felt wonderful. Then resumed at 100mg which is current today. The research article from July 2023 had many patients that had to reduce their dose…often 300 to 200 or 200 to 100mg. The encouraging results included all patients other than those that stopped the drug entirely.
I did read of someone on this website whose doctor started them at 100 to see how the body would react and then increased to 200. Probably a good way to go…generally oncologists at PMCC start at the recommended dose for body size and then reduce if necessary. I expect you are not at PMCC?
Yes to your interpretation of the ca125 increasing to 20 (doubling) and that precipitating a CT scan. That is, according to the last monthly clinic I attended. However, if it goes up and down between 10 and 20, you might be just fine. Or your oncologist may do a scan earlier at your request. For peace of mind.
Happy to help if you have any other questions. It is so important to hear from others going thru the same ordeal.
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Hi @ellie
I am not at PMCC. I had read about many women on Zejula requiring blood transfusions on the higher dose. I requested to start at 100 mg. I started Zejula at the end of March. I have felt great on 100 and blood work is good. Today my oncologist encouraged me to try the recommended dose, so for the first time I took 200 mg. My pulse rate tonight is higher than normal. Do you have any side effects from Zejula? I really appreciate your replies! It is so nice to talk others going thru the same thing.
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Hi @flory
I am fine on the 100mg. Feel 95% of normal…and sometimes 100%. I was not fine on 200mg…if I had not stopped I was heading for a blood transfusion. Other symptoms on 200: nausea, some neuropathy in feet—which was leftover from chemo as well. The low hemoglobin caused total loss of energy and if I had persisted and not stopped what I was doing, heart problems. My blood pressure has always been very low so even tho somewhat elevated on the drug, it was below 140. I actually did ok on 200mg other than the hemoglobin effect.
Hard to know what to do. I do not know if being on 200 for 3 months protected me more than starting and staying on 200mg. The research does not describe this—was not part of the trial.
Let me know how it goes, what you decide to do and how you fare.
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@flory based off of you're ca125 being 36 at diagnosis I would say it is not a reliable marker for you. There is a lot of mixed info out there on ca125. Mine was 86 at diagnosis and then normalized the day of surgery so my team tells me it is not valid for me. Other residents have said they cannot ignore the fact that it steadily declined during chemo even though it was normal. By the time chemo ended in November it was 6, and last blood test middle of March it was 5. I could be wrong but I've read quite a bit stating that truly the ca 125 should not be used for surveillance in other subtypes. Only meant for hgsoc. For my clear cell HE4 and ca 19-9 seem to be more sensitive but drs don't routinely use them
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@flory I saw this and wanted to expand on it a little. If your marker double in one month's time, that is when they would look at things closer with either a CT scan and/or bloodwork repeat. So they compare say April data to May's data for example and if it had jumped by double what it was last time they would then investigate further. For me, my numbers last check went from in the 300's to the 600's. Unfortunately for me, there is nothing left to tap into for treatment. I have LGSC and it is the first time my numbers jumped like that. My scans showed both growth and progression as well. Hope this helps you as you navigate your own journey.
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thank you @Strongwoman i appreciate all the info I can get. I’m sorry that there are no longer options for you. That makes me sad. I recently read on the Inspire site of someone that had great success with Trametinib for low grade. Not sure if you have already tried this? Or if it’s available I’m Canada?
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@flory Thank you for your suggestion. I have tried Trametinib and these are the words of the Oncologist "it's the absolute worst case I have seen thus far" which is in relation to the skin rash I developed shortly after taking it. It was the most painful rash I have ever experienced. Air on my face would hurt it. It is was such a reaction that we would not rechallenge it at a smaller dose either. I have looked into trials at PMH and there is nothing available to me. I am at peace with it. I knew a day would come that this would be the case. All I do now is enjoy every day for what it is and don't look too far ahead. You will get through your journey and you have all the ladies here to help as well. If you are available today, join our Teal Thursday chat at 1pm ET. 🤗
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oh wow that reaction sounds horrible! So sorry that you had that experience. I am usually out during the day but I will try to pop in. I always read all the posts in the evening. I really appreciate everyone here that has supported me through this journey ❤️
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Hello all, haven't been on here since awhile but wanted to join in the chat about CA 125. I decided not to go on zejula after my chemo ended Sept.2023 for a lot of reasons but mainly cost. My first post treatment CA 125 was 19 , most recent was 16 but my scan showed a lesion on my liver so back to chemo. If I had relied on the CA 125 result it would have been another 3 months before the lesion was seen so personally I'm not feeling a lot of faith in this blood test as an indicator. I am stage 4 HGSC was hoping I could be one of the lucky ones but not so. I feel great and am almost back to precancer level where I ran, was ready to start training for another half marathon 2 weeks before I was diagnosed Jan.2023. Was stunned to say the least with this most recent liver lesion especially with the CA 125 results.
This was caught early ,I'm strong physically and I did well on the past chemo with a very large ovarian tumor and lots of complications so I'm remaining positive moving forward. Wishing all the best to you all on your journey with this disease.
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Thanks, @Alexson for your comments. I was feeling so good that I delayed my next CT scan for another month…but probably not a wise idea based on your input. CA125 remaining relatively constant is obviously not an IFF indicator. At least you are over 6 months from chemo…keep in touch going forward. Wishing you good outcomes soonest.
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Hi Flory ,at the highest when my diagnosis was given after a trip to the ER was 189 . After chemo dropped back down within normal range .
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waiting and watching ca 125 is nerve wracking. I hope I can get to 6 months post chemo without reoccurrence 🤞🤞🤞
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Thank you 😊
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@flory Looks like you are receiving a lot of good info. I am sure you will process it all and be able to have some discussions with your team accordingly. Hope you are doing ok these days. Take care. 💕
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Hi all,
At my first follow up appointment, post chemo, my oncologist said it would take up to 3 weeks to hear back about funding for a PARP inhibitor, likely Niraparib. I patiently waited 3weeks without a call. I contacted the drug access coordinator yesterday to find out where things were. It was clear from her flustered response that something had gotten missed. The provincial government has approved Niraparib, but I’m not 65 yet so it won’t be covered by OHIP. And that’s all that was done in the 3 weeks!
The paperwork for my husband’s benefit plan wasn’t submitted, the HRD test wasn’t ordered. And nothing was started on Trillium funding for when my husband retires early next year. I’m 7 weeks post chemo so the clock is ticking. There’s a postal strike and Christmas holidays approaching too.
It has been resolved, they will provide 4 weeks of drug from the hospital pharmacy to cover me while the insurance company works on approval. I got the link for the Trillium Drug Program and sent that in.
All I can think is what if I hadn’t called? This has really shaken my confidence in my treatment team.
The lesson for all of us; be the squeaky wheel. No one cares more about the outcome than you so put on your big girl panties and get loud.0 -
@mcb yes, this happens unfortunately. I also am hesitant at times to call and ask, but if you don’t it likely gets missed. I agree with you, you need to take matters at own hand. Hard to hear that you need to be 65 to get funded PARPinh- is this because the government believes younger women don’t get ovarian cancer. Women, we really need to start demanding better treatment. @mcb -you may want to write to Ovarian Cancer Canada.
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It will be funded through TDP, it’s just a more complicated application than the Rx drug coverage from OHIP you get if you are under 25 and over 65yrs. You have to give them access to tax returns for your household and they calculate a deductible of 4% of your net income.
How are you? Any news on how your treatment is going?0
