Hello and thank you for contacting us.

It is difficult for us to be involved in individual patient cases as we are not doctors and cannot give a medical opinion.

But I can give you some links that may be helpful for you to read and take back to your doctor to talk it all through. This may help in understanding your situation better.

All treatments have an endpoint, whether that is a certain dose, time frame or there is a change in its effect on the cancer. But I appreciate this is very difficult to hear.

From our website information, we understand that as long as Niraparib is working and side effects are not overwhelming then this can be continued as the specialist feels is appropriate.

In the research available, that influences the NICE guidance for NHS practice, only a small percentage of ladies got to 3 years of treatment with this drug. This is either because they progressed or were overwhelmed by side effects. Those patients that got to 3 years of treatment were continued if the treating team felt there was enough evidence that it would be of benefit. Please see the section I have highlighted on page 17 of these NICE summary papers.

If drugs cannot be funded by the hospital trust there can be an application to the Cancer Drugs fund. The consultant involved has to apply and show that someone will have, or has, the potential to have a positive result.

If you feel you would like a second opinion on this decision do discuss this with your doctor. Sometimes having a second team review your medical notes can help you feel that everything has been looked at.

Take care and I hope some of this is helpful. You must understand all the decisions made about your care, so do talk this through with them to hear how they came to this decision.

If you would like to talk anything through with the nurses on the helpline then call 0808 800 4040. Lines are open mon-fri 9-5.

Sarah.

Thankyou so much this is very helpful. I have an appointment next Tuesday to discuss treatment. I really appreciate your input. Thankyou once again. Forever grateful. 

Hello, how did you get on looking into getting the medication extended? 

Hello, did you manage to get your medication treatment extended?

Hi Willow10 and thank you for your post.

I’m glad to learn that  you’re feeling well and have had no recurrence.  That’s really positive news.

This is an old thread, so you might not get many replies here. If you want more people to see your post, it could help to start a new thread in the “Living with Cancer” section. That way, you’re more likely to hear from others in the same situation.

There isn’t much research about what happens after 3 years on Niraparib, so it can feel uncertain. The best thing is to talk through the risks and benefits with your oncologist. They can look at your history and help you decide what’s safest for you. 

Please get back to us if you need any more information or support

It might help to talk things through with one of our nurses on the helpline. You can call for free on 0808 800 4040, Monday to Friday, 9am to 5pm.

Kind regards

Tina

Hello willow. 

I'm sorry I never posted the outcome of my medication review. 

I did extensive research both in the UK, Europe and America. I contacted the makers of the drug asking for their research past 3 years. 

I appealed the decision to stop my Niraparib treatment after presenting my case to my consultant and then MDT. I had a CT scan in preparation for the MDT.

I was told after every blood test that everything was in range. In essence this was my point. The medical professionals were telling me nothing had changed the Niraparib was doing it's job.

So why then would they discontinue a treatment that is working for me and keeping me progression free. 

Long story short. MDT suggested treatment should stop march 25... However if I wanted to continue they would agree to a further 12 months providing I signed a document stating I was going against medical advice and that I had been informed of possible side effects of longer use off Niraparib.

Well it's January 26. My bloods are still in range. I'm still here and at my next consultancy which is next month I'm expecting to be in the same situation again. I will of course continue to speak for myself and appeal  that decision while I'm well. 

Best wishes Lorna. 

Hi Kel 103.

After extensive research I presented my case at clinic to my consultant. It was agreed I could carry on treatment for an additional 12 months providing I signed to state I was going against medical advice and I was banned aware of possible side effects. 

My next review is in February. X

I'm sorry for not responding. I somehow missed your post. 

The tragedy is that my daughter was diagnosed exactly that same but stage 4 in June 25. She has just finished chemo and will be starting on Bevacizumab every 3 weeks for 18 months. 

Unfortunately she was not diagnosed with HRD therefore he treatment is different. X