Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis ([email protected]).
Hi everyone, there is currently a glitch in the system that is causing the notifications you'd normally receive to your personal email inbox are not being sent. The platform provider is working on this and hopes to have this fixed as soon as possible. In the meantime, please be sure to sign into OVdialogue often so that you don't miss any conversations, personal messages, or new posts. Thank you for your understanding.

Zejula (Niraparib)

13»

Comments

  • @Jam
    Like Strongwoman commented, you're not in the minority having expectations of recovery that go unfulfilled.  You're actually in the majority.  I've just finished some work with Queens U targeted at the transition from primary treatment through recovery that is intended to manage expectations and provide support and resources for symptoms that continue past a logical recovery time.  I'll post the links to where it can be accessed in a month or so.  But clearly there is a gap in support through treatment and that of the period post treatment that we identified about three years ago and has taken us that period of time to complete our research and design the guide.  Stay tuned, but yes as Strongwoman stated, the body takes it's own pace at recovery.  Some issues never disappear and become chronic conditions, others just seem to take forever and others disappear almost immediately. 

    Good luck with your own recovery.  Please reach out any time you have questions or wish to share experience.  
  • Hi,
    I am new to the dialogue.  I have been through HGSC diagnosis, surgery and intraperitoneal chemo in 2022 from April through to November.  Am cancer free at the moment.  I started niraparib Dec. 10 2022 and have had numerous side effects.  Most were manageable until platelet count began to fall a month ago followed by decrease in my hemoglobin.  The hemoglobin effect was to cause severe shortness of breath if i did anything requiring aerobic competence.  Such as walking up a flight of stairs.  Such as walking along a street with a slight but continuous incline.  Normally aerobically I was strong noticing only slight impact from chemo.  But this last niroparib effect has levelled me--last reading was 83 down from 88 the day before and 92 the previous week.  Normal is 120.  My oncologist had decreased my dose from 200mg to 100mg 2 weeks ago...but the hemoglobin kept on falling.  She ordered me to stop for a week and tomorrow I see her again...with more blood tests of course.  Along with low Hg I had severe leg cramps at night...awake every hour.  Prior to this I was sleeping well.  Hair seems to have slowed in growth as well. Although I have been off the drug for a week, I am still not recovering aerobically. My leg cramps have diminished, thank god.

    I am interested if anyone has experienced the same hemoglobin problem and how long it lasted/did it improve/did you stay on the drug.

    Thanks to all of you who have posted your journeys.  They are so informative and encouraging.






  • You and I are on similar paths.  I was diagnosed in March 2022, on chemo April to August and started 200 mg Zejula in October. My neutrophils and hemoglobin also decreased significantly.  My oncologist took me off the Zejula for a week, then resumed with 100mg.  I was also reasonably physically fit, but the first few months I was on Zejula, I felt short of breath when climbing a flight of stairs.  This seems to have subsided.  My resting heart rate has increased (as my Apple Watch keeps telling me).  Otherwise, I am feeling ok.
  • I have just read through everyone's comments on this thread.  There is quite a variation in how everyone is coping, understandably.  I find it interesting that oncologists have differing ideas on how to treat/test.  I know that the drug company suggests starting patients at 300 mg, but my oncologist starts patients at 100 mg, then goes to 200 mg if all is going well.  He says he has had no one succeed at 300 mg, so I was interested to see someone's post that they are doing okay at 300 mg.  Good for you!!!!  I started at 100 mg on Feb. 20 2023 and went to 200 mg on March 20 2023.  I saw my GPO on Wednesday and he said I am considered to be stable at this dose.  (I've only met my new onclogist once, in December, and likely won't see him again for a very long time.  On Vancouver Island we tend to rarely see our overworked oncologist, but a GPO monitors how we are doing.  It can be a bit unnerving as they have very little training in/knowledge of oncology.)   Anyway, I now only have to see the GPO once every 3 months, and they will fill 3 cycles of Niraparib at a time for me.  I will have monthly blood tests with CA125 every 3 months.  He will not do regular CT scans, only if indicated by rising CA125 levels.  And of course if my blood work looks bad or my symtoms become worse we will reassess. 

    As for side effects, I suffer from increased constipation.  I expected this as I struggle with it even when not on drugs.  I'm rarely getting a solid night of sleep, but don't lay awake for long periods, so it's not too bad.  I get sleepy in the evenings when watching tv, but otherwise okay.  I don't think I have any other side effects at the moment - hope it stays that way!  I wonder if any of you work with a naturopath specialized in oncology.  I do, and suspect that supplements she has me on are helping to minimize my side effects.  If you are struggling, you may wish to reach out to a naturopath for support, especially one who is trained in oncology.  I spend a lot of money on supplements, but feel confident that they are helping.  If you want more information please ask!  If you are in BC I can give you her name - if that is allowed in this forum.  All of my appointments are virtual, so doesn't matter where you live.  I am also fortunate that I'm able to be very consistent with exercise (fitness classes, yoga and golfing) and am very diet conscious, all of which contribute in a positive way. If you live in BC, ask me about Inspire Health if you are not familiar with this wonderful organization.  They support cancer patients and their caregivers at no cost, only donations. I can't say enough good about their support!!!

    I was also interested to read Eleanor2's comment about having a sample of her tumour tested for a somatic mutation.  I was negative for genetic mutations, but my new oncologist has sent a tumour sample for testing, called an "oncopanel".  He explained that sometimes when there is no hereditary mutation, cells can still mutate and cause cancer.  I don't yet have results, though it was sent for testing on Nov. 8.  He feels confident that they will find a mutation because of 2 indicators.  First is that my first remission was considered to be long, I think close to 3 years.  2nd, I was treated very successfully with just carboplatin on my recurrence, July 2022 - Dec 2022.  After just one treatment my CA125 had dropped from 521 to 87.  After my 2nd treatment of carbo it was 23, well within the normal range.  This suggests that my cancer is very responsive to carboplatin.  Niraparib works in a similar way to carboplatin.  According to him, I would continue Niraparib either way, but with a mutation it will be more effective.  So I continue to be hopeful as I await the results!!  (I question why this testing is not done for all of us, but assume it is due to budget limitations.  I suspect he was able to build a case around me being an excellent candidate for the testing.)

    Sorry for being so long-winded, but  I share this info in hopes of encouraging others.  And as Eleanor2 suggested, you may want to question your oncologist regarding the somatic testing or oncopanel. Hugs to all my Teal Sisters, especially those of you who are struggling with side effects etc.  Stay positive!!!!
  • My oncologist also said that, regardless of the results of Tumor sample testing, she would still recommend Zejula. (I am not BRCA positive).  But if I wanted to go ahead with the test, there would be a few of $2000.  I am in Ontario.

    i am also seeing a Naturopath.  Every little bit helps, right?
  • Wow, such a difference from province to province!  Will you go ahead with the tumour test dorisirene?  

    Yes, I believe in doing all I can and I have a naturopath I really like and trust.