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’m sorry I can’t help, I’ve never heard of it either. I looked it up, as I’m sure you did. It does sound like a full on killer like Taxol. I very much hope it is and it can do a good job on the beast. I know you’ll keep us posted. My very best wishes for better than stability this time. Gill X
hi was was on niraparib tablet form for 3 months this time last year didn’t work since then Iv been on taxol no luck so went on doc Rubin not sure what it’s called they call it the Red Devil also no luck did anothere on for just 3 months can’t think of name beginning with c still no luck so now I’m starting Cyclophosphamide tablet form so hopefully may get some change xx
You’ve been through a lot. Let’s hope that Cyclophosphamide is good for both of us!
Thank you for replying to my message.
The best of luck with the Cyclophosphamide.
Anne xxx
Good luck lve not heard of it before, hope and pray for you that it does the job. Just stay positive sending love & hugs SheilaFxxx
Thank you so much for replying, Shelia. It’s been hard to feel positive this week but I’m getting closer to it today.
This is such a tough illness for all of us.
Anne xxx
Hi. Sorry about the taxol but stable is better than growing! I’ve heard of cyclophosphamide for other cancers. I thought it was a pill form of chemotherapy? I have seen people on this forum take it but not recently. I associate it with breast cancer. I think it’s an older standard form of chemo. Unfortunately I think it involves hair loss but I guess you’re used to that with taxol. It’s interesting combining it with Niraparib. Sending you big hugs and hopes that it works. Xx
I can't help with this but just sending you best wishes and keeping my fingers crossed. x
I think it’s used pretty frequently as an infusion if your 1 st line didn’t work. Please don’t lose hope, there are still many treatments available.
Hi Anne, I haven't heard of cyclophosphamide & only starting Niraparib myself in January but hopefully there will be an improvement on this regime for you 🙏. A bit anxious myself about starting the Niraparib but if it keeps me stable & the side effects are not too bad I will be happy. Best of luck & let me know how you are getting on X
Thank you for your reply. I’ll get the Niraparib today and start it tonight. I’ll let you know how I get on.
Anne xxx
It’s taking a while for my local pharmacy to get Niraparib so I can’t start it until next week. I won’t forget to let you know how I get on with it.
Anne
Thats a pity I am sure you wanted to get started on it especially when its so close to Christmas & then if any changes needed to be made to the dosage they could have done them before it. I left my prescription in last week & my pharmacy said they wont order it just yet but I was right to bring it into them because they have to open an account with whoever supplies it as Niraparib is considered a high class drug & they haven't had any other customers using Niraparib before me. I hope you get sorted & you will be ok on it & get to enjoy your Christmas with your family. All the best & we will chat again soon Xx
Hi, I haven’t seen cyclophosphamide used in OC but my dad was on this, tablet form , for multiple myeloma, no side effects, minimal hair loss. I am on Niraparib for OC, low dose, no real problems xx
Thank you for your encouraging reply. It’s great that you’re tolerating Niraparib so well. I’m starting it next week.
Anne xxx
I have been on niraparib for 5 months. I have my scan in another month and feel much better than I had before. I am stage 4 and was diagnosed in 2006. Would love to hear how everyone is doing on this drug. I definitely have some side effects with fatigue and just an overall unwell feeling. Hopefully this is working
Thank you so much for your reassuring reply. It is so good to hear that you feel better than you did before starting it. I long for that!
I’m starting it tonight and I’ll let you know how I get on. I was on Olaparip for over two years and didn’t have any real side effects. But it stopped working and I’ve loads of tumours in my abdomen now and painful nodes too.
I hope you continue to improve with Niraparib. The very best of luck with your scan next month. Let us know how it goes for you.
Anne xxx
Hi Anne, I’ve been on Niraparib for a little over 2 years now. I’ve had to take a few breaks from some side effects. So far I am doing ok on it as my ct scans look good. I don’t know anything about the other drug. Sending best wishes, Donna
Hi Donna. Thank you so much for your reply. It’s great that the Niraparib is working so well for you. I don’t think I’m having many side effects. It’s hard to know because I have chemo too.
Have a lovely Christmas.
Anne xxx
wishing you the very best for these new treatments. They are sure to do wonders for you 👍🏻🤗
Thank you for your encouragement. I won’t pretend it’s easy right now but I’m having some slightly easier days.
Have a lovely Christmas. 🎄
Anne xxx
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