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 (mfallis@ovariancanada.org).
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 (mfallis@ovariancanada.org).
Niraparib and Avastin trial
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I am looking at a study involving these two medications together. I just wonder if anyone here has taken apart and how they are feeling. I have been on Niraparib over a year now and showing signs of progression. Love to hear from someone
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@annlaba I am not sure if you have heard from anyone or not. Have you tried typing it in the search bar to see if you can find any common threads? Niraparib is also called Zejula. So perhaps try that in the search bar to see if you can find it that way.
I know there are ladies that have been on both from previous post threads. I am not on it myself as I have a different type of OC. Mine is LGSC and both those drugs are used in HGSC typically.
I am happy to hear you have been on it this long and are showing signs of progression. You go girl!! So great to hear!
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Hi @annlaba I was looking back at the threads and came across your one inquiring about Niraparib and Avastin together. Were you successful in finding out more about it and/or able to go on it? What are you doing currently for treatment? How are you in general? Have you continued to not be showing signs of progression? Would love to hear an update, if you would like to share. Let us know when you are up to it.
Take care
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I started the trial in September. I have had six treatments so far. Other than being extremely exhausted at times I am doing well. My first scan showed regression of the lymph node size. I am going for my second one on Tuesday so we will see what that shows. The treatment is very time consuming as I have to go the day before to get all the labs done and exam and then the next day have the treatment with avastin. It does end up taking the whole day even though it is a 15 minute infusion. Fingers crossed and I will keep in touch with you.
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Yes, @annlaba the exhaustion part of it, is difficult and hard to find ways to overcome some of it. Some is accepting 'what is' and napping when you can. I am happy and grateful to hear that you have had some regression show in some of the lymph node size. It is hopeful in ways. Difficult to not let the hope get to high but positive news that I am thankful you shared with us. The other part of being in treatment is the length of time it takes to either have treatment or the lead up to it. It can be very exhausting and one plans around these times depending on how it leaves one feeling.
I am doing okay. I am more fatigued than normal and am slowly accepting it. I went with my son to a Specialist appt for himself on Thursday and there were stairs. They were hard! We have stairs going to the basement in the house and where laundry is, and I have been doing them but these seemed much more difficult. He is a good son and let me take his hand for descending the stairs. That outing was enough for me though. I think I came home, threw something on Netflix or something and started knitting. I don't eat the same food as they do anymore and find I am not all that interested either. So trying to find ways to get around that and create some things for them. I am slowly wrapping some of my legacy projects, with notes and cards. Yesterday I managed to do one. Still have quite a few to go but will get there. It's the notes that slow me down, depending on who it is for. They all look pretty when all wrapped though and that is good. Thanks for asking.
Keep us updated now and then. Take care 1 -
@annlaba I am curious to see how your latest scan went and if you are still on the trial. How are you doing and where you are at in your treatment/recovery. If you can put up an update post, I know I would appreciate it so I can stop my mind from wondering. Looking forward to hearing where you are at.
Take care 1
