Trial with Niraparib and Avastin

[Tealgirl7]

I am stage 4 HG SO. I have been living with this disease for over 17 years. I am now considering a drug trial using Niraparib and Avastin combo. I believe it is intended for people who have been taking Niraparib with progression of disease. Would love to hear from anyone. Thank you

[Motiva]

I hope the Niraparib augments the Avastin. 17 years! You have been treated through such drug developments. Congratulations on defying all the odds- an inspiration.

F x

[Goodgirl98]

Hi Tealgirl7, 17 years! it is so inspiring to hear that you are doing well. I am not educated on the trials but would like to understand why you are looking to participate in the trial.

[Tealgirl7 in reply to Goodgirl98]

I have had two Frontline sessions of chemo and been on Niraparib for over a year. I have a gradual increase in my CA 125 and my scans show progression of disease. They are hoping by adding Avastin and to the other drug there will be a good outcome

[Newbery3]

Wow!!! 17yrs 🥳 that's what I like to read 📚. I'm currently on no 12 of 20 avastin and taking 400mg olaparib. 6months in on that, I'm stage 4b hrc+ brca negative. I'm NED and doing very well, the only negative is the fatigue 😩 but I still get out and about and the last blood said my thyroid was low so doesn't help! Mine is first line so not a trial. I wish you all the best and hope that helps x

[Tealgirl7 in reply to Newbery3]

Thank you so much for your response. I am glad that you are able to take both of those medications together. This is a new one as I have had several rounds of chemotherapies. I am however Platinum sensitive. I'm very nervous about starting this trial as I feel well right now. I have been on the Niraparib for over a year. I am not braca positive so different. I will let you know how it goes. I live in Canada

[Newbery3 in reply to Tealgirl7]

I'm brca negative too, I think you'll manage just fine 😊 you have been though lots harder by the sounds of it, big girl pants on and think positive! 🥰 I'm hoping to visit Canada next year, I'm in beautiful Wales 🏴󠁧󠁢󠁷󠁬󠁳󠁿🏴󠁧󠁢󠁷󠁬󠁳󠁿🏴󠁧󠁢󠁷󠁬󠁳󠁿 X good luck and big Cwtch (hug) Rhian x

[Dunsinane]

Hi Tealgirl7, like you I have had slow progression (frontline chemo ended July 2022 ) while on Niraparib, but am otherwise currently feeling well. I’m HGSOC 3C, BRCA negative. I’ve recently been offered this trial instead of starting second line chemo, so I’m interested to know how it’s going for you so far - well I hope! How often you are receiving the Avastin and what dose of Niraparib are you on? Keeping everything crossed that this combo does the job for you!

[Tealgirl7 in reply to Dunsinane]

I have only had two treatments so far. I am on 200 mg. I have a bit of a headache and have developed a rash. They want to see me tomorrow regarding that but otherwise I'm doing okay

[Dunsinane]

Thanks, take care!

[Tealgirl7 in reply to Dunsinane]

I am much improved and did not even go in to see the doctor yesterday. I will keep in touch and let you know how it goes. My CA 125 level has dropped in the last two blood tests so fingers crossed

[Newbery3 in reply to Tealgirl7]

Glad your feeling better 😊 good news with CA x keep going x

[Dunsinane]

Terrific news, thank you for sharing it! How often are you receiving the Avastin?

[Tealgirl7 in reply to Dunsinane]

Every 3 weeks my 3rd is next week.The week after I have a CT scan.I am feeling ❤️‍🩹

[Green999 in reply to Tealgirl7]

Hi Tearlgirl17,

I am disappointed with my oncologist. He stop me from Parp because he understands that I am negative for BRCA and HRD after 8 months. I got a small pleural infusion and he told me I will be dead soon. From October to now - February am not in any medication. He waiting my CA to increase to started again on chemo. I am feeling healthy, no any problems, but I am scared so much! On feb 02 I will have a new CT. I live in Burlington and my oncologist is in credit valley hospital in Mississauga. I may ask my GP to arrange consultations with an oncologist in Princess Margaret Hospital in Toronto. I will be so glad if you give me your oncologist name, please. Thank you very much!

[Tealgirl7 in reply to Green999]

You could ask your doctor for a consultation at princess margaret

[Dunsinane]

I’ll be thinking of you! 🤞

[Tealgirl7 in reply to Dunsinane]

I'm not sure where you live but I live in Canada. I will keep you posted for sure

[Dunsinane]

Thanks, I’m in Toronto. Seen at Princess Margaret.

[Tealgirl7 in reply to Dunsinane]

It is a small world. I am at Princess Margaret also. I feel the care here is very good. I was a nurse in my working days so sometimes read too much.

[Dunsinane]

I too read far too much despite having no nursing background. I’m limiting myself to 15 minutes per day now as I was spending literally hours.

[Tealgirl7 in reply to Dunsinane]

Let me know if you decide to do the trial

[Tealgirl7 in reply to Dunsinane]

I know you are interested in the trial. I just wanted to let you know I have just got over having covid. I picked it up from my friend on the Tuesday and had the new vaccine on Wednesday not knowing. I was put on the paxlovid. It delayed the treatment for one week. I think my symptoms were more from the paxlovid than the covid to be honest. I am back tomorrow to have my third treatment and here hopefully hear about all the research they have done on my tumor.

[Dunsinane]

Sorry to hear about the Covid, there seems to be a big uptick in cases here. I had my booster and flu shots together a week ago and felt pretty tired, but better than dealing with either virus I suspect. They’ve increased the dose of Niraparib to see if that helps, as my progression has been very slow. It’s only been two weeks, but so far my platelets are ok, unlike the first three attempts at this dose. I have a scan scheduled for mid-November and if there’s more progression I think my options are to start the trial with the Avastin added, or have more chemo. I’ve also had the tumour testing done, but haven’t had a debrief on the results yet. Hope all goes well for you with tomorrow’s treatment.

[Tealgirl7 in reply to Dunsinane]

I had my treatment yesterday.All is good. My CA 125 is down again. I have a CT next week to check progression so fingers crossed. They will give me the results of the studies they are doing to see if they will add another drug to the mix.

[Dunsinane]

Fantastic news! I’ll also keep my fingers crossed for you for the CT scan next week.

[Tealgirl7 in reply to Dunsinane]

I got the results of my scan. They were good. It showed reduction in the lymph node size. I am continuing on the same regime. I will have another scan in January. I have had four treatments now. I feel generally well but have. Of total exhaustion. We have managed to get away for a couple of weeks to Florida. Hope you are doing well

[Leniko]

I can only comment on Avastin with kept my tumors from growing for over two years. They were a result of OVCA, which had traveled to my back psoas muscle. It eventually stop working, so now I’m looking at other solutions. All the best to you

[Dunsinane]

I’m really pleased to hear the trial is working for you. I learned today that I’m not eligible to participate after all because I still have an open surgical wound from 18 months ago. My last CT showed things are stable on the increased dose of Niraparib, but they seem keen to begin chemo again regardless.

[Tealgirl7 in reply to Dunsinane]

Thinking about you and wonder how you're doing. I am still on the trial but my CA 125 is rising. I go for another scan in 2 weeks.

[Dunsinane]

I had to stop the Niraparib entirely a week ago because my platelets tanked, but up until then my CA125 had been falling. I have an appointment next week to discuss next steps. Sending positive thoughts for your scan.

[Tealgirl7 in reply to Dunsinane]

My scan looked fairly good. One node was smaller and one a little larger. I am feeling fairly well and still on the trial. My lab work has been good so far other than a slow rise in the CA 125. That level is very vulnerable in my case. I had many years where the reading was over 200. I hate to see the rise but trying to not worry about it. The doctor relies more on the scan results. How are you doing.?

[Dunsinane]

I’m glad to hear your scan was positive overall. I’m currently off Niraparib after my platelets tanked and I have to say I have much more energy now. I have a scan booked for mid-February.

[Tealgirl7 in reply to Dunsinane]

Happy to hear you have your energy back. Mine is certainly lagging. Doing my best to enjoy life. Our grandson is having some serious surgery on his back early February. Trying not to get too stressed about it. I think it is the stress that gets to me the most. Happy to keep in touch

[Dunsinane]

I find even small things can stress me out since my diagnosis so I can well imagine how you’re feeling with your grandson’s upcoming surgery. I do hope it goes well. I’m likewise happy to keep in touch. I imagine at some point we’ve probably even been in the 5th floor waiting room at the same time!

[Dunsinane]

How are you doing? I’ve been thinking of you and hoping your grandson’s surgery went well. I don’t have the CT results yet, but my CA 125’s risen while I’ve been off the Niraparib. On the plus side, my incision’s finally healed, so I may now be eligible for the trial.

[Tealgirl7 in reply to Dunsinane]

Glad to hear you are healing. I was there last week and have an appointment on the 5th of March. My next scan is booked for March 20th.My grandson is doing very well. The surgery was seven and a half hours. Being the x OR nurse I tried not to loose it. He is home walking quite well and up and down stairs. He can't bend at all for at least 6 months. The doctor said the recovery will be a year. Hopefully we will meet up sometime

[Dunsinane]

That must have been a very complex surgery, glad to hear he’s doing well. I hope the results of your next CT are equally positive. I’ll let you know what they say about mine. I continue to feel so much better off the Niraparib - much more energy, uninterrupted sleep and mentally sharper. My next appointment is virtual (which I find much less stressful than going there), but it would be nice to meet you sometime. In the meantime, take care.