Hi ladies,
It’s been a tough week for me. After 6 months of Taxol there is no improvement in my tumours. But they have remained stable. I was giving up all hope but today my oncologist said that I’ll be starting new treatment on Monday.
Cyclophosphamide & Niraparib
Has anyone any experience with either? I’ve never even heard of Cyclophosphamide as a chemo infusion.
Anne
I haven't heard of it but it's good news that they're starting a new treatment. We all hope it's going to be good news. xx
I've certainly heard of cyclophosphamide for treatment of other cancers, it's disappointing that there's no change after the taxol but good that the tumours haven't increased in size. Best of luck with everything
Hi Anne,
I have not heard of cyclophosphamide but I was due to be started on Niraparib after 6 sessions of Taxol and Carboplatin, but I’ve to do a few more sessions 🙄 and then my Oncologist has changed his mind to Avastin again. It’s all very confusing and I wish you luck with your treatment and hope things improve.
Have you done genetic testing, I was so close to qualifying for immunotherapy but it didn’t work out, my Oncologist said it would have been great for me.
Mags xx
Hi Mags. Thank you for your reply. I have the faulty BRCA1 gene.
That’s extremely frustrating about immunotherapy for you. Is there nothing you can do to get it? It’s hard to believe that you can’t access what you need. It hasn’t been mentioned to me as an option so far.
Anne xxx
thanks for thinking of me.
End stages here. Liver failure.
I wish all of you a better outcome.
hi, I have been taking olaparib for almost 4 years which is in the same family as Niraparib. I also have gene brca2 .
I know I had to push my oncologist back then to get the drug, I am still in the minority in my area to receive it.
I don’t know where you live , the criteria for receiving drugs varies so much and can be dependent on where you live but I think you will need to push your oncologist a little more. I really do hope you get the treatment you need, keep pushing if you are refused go back again. You will be in my thoughts.
Thank you very much for your kind reply.
I was on Olaparib for over two years but it stopped working for me. I’m starting Niraparib tonight. Apparently it is a little different so I hope it’ll do something for me.
I’m starting a new chemo infusion tomorrow. It’s Cyclophosphamide. I’m exhausted all the time and not doing too well but hoping for some improvements from the new chemo & Niraparib. I’m BRCA1.
It’s excellent that Olaparib is working for you for so long. That’s very promising for you. I wish you continued success on it.
Anne xxx
Thankyou I hope you do well on niraparib I always think that the longer we hold on something new will come along. Do you mind me asking you if you responded well to platinum chemo, carboplatin etc.
Is there a criteria for being able to take niraparib. My very best wishes to you
Carol.
I live in Ireland. I don’t know what the criteria are to qualify for it, though.
I respond very well to Carbo. It worked for chemo in 2015 and 2018. I got two infusions of it this time but had a massive anaphylactic shock reaction to it after only 10mls of the third dose. I nearly died so unfortunately it is no longer an option for me. Thank you for asking. I appreciate your interest.
Anne xxx
Hi Anne, the very same thing happened to me recently with Carboplatin and I also had it in 2016 and 2019, but my oncologist has desensitised it and instead of taking 1 hour for the infusion it now takes 2 1/2 hours, I was able to get through it the last session, my stomach felt sick a few mins in but I took Zofran and was able to take it then, thank God, Having it again today so fingers crossed. I am also in Ireland. Best of luck with your treatment xxx
Thank you for replying.
It’s brilliant that you can still get Carbo. I’m delighted for you. My consultant doesn’t think it’s an option for me anymore, unfortunately. I had been having the infusion over 2 1/2 hours too. I’ve just finished my first infusion of Cyclophosphamide. I can only hope that it does some good!
I hope the Carbo goes well for you today!
Anne xxx
Jo Anne. Bad news…had a reaction again this am to carbo so it had to be stopped….no more carbo for me, Hope your treatment works well…let me know how you get on ❤️
Damn! I’m sorry to hear that. That was distressing for you. I’m sure your consultant will come up with an alternative plan. Sorry you’ve had a tough day.
Anne xxx
My first infusion of Cyclophosphamide was fine, thank you. Felt nauseous but they gave me Emend.
Thanks Anne, I don’t know what the next plan is yet. Like you after months of treatment, and surgery in June, cancer is still there. It’s such a worrying time but great to see on this site that people are doing well and surviving longer than what the outcome was not that long ago. I hope you are coping well on your new treatment and all we can do is stay as positive as possible and keep fighting. xxx
That’s true re survivors. You’re great!
You do the same about keeping positive and strong.
I hope you have a good Christmas 🎄
Anne xxx
Hi Anne, I hope you are feeling well and tolerating the new med well. Happy Christmas and I hope you can enjoy the festive season with your family….Margaret
Hi Anne, hope you are keeping well and wondering how you are getting on with your new treatment….Mags
I’m on Niraparp since June 2022. Only on 100mg daily . I’ve no side effects except being a bit tired . My ca125 is rising but my scans show slight reduction. I’m BRACA neg
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