Waiting for new treatment to start getting anxious

[valo]

Hi. I was diagnosed 2015 have. Had chemo and 12 treatments of avastin. Now waiting to start niraparib treatment. Has anyone taken this. How did you cope and deal with side effects. Many thanks

[Yoshbosh]

I haven't had this drug, but it is one I am interested in. I hope it has good results (and minimal side effects) for you!

[Nicky100 in reply to Yoshbosh]

They are just starting to roll out the compassionate Use Programme as we speak!! I would get in there quick if you can! Email me if you need more info xx

[Yoshbosh in reply to Nicky100]

I'm already flagging it up to any medical professional who will listen 😆 Got my appt at the Royal Marsden through already - next Tuesday, 10am.

[Nicky100 in reply to Yoshbosh]

Whoop brill. Is that your team there?

[Yoshbosh in reply to Nicky100]

I'll send you a pm in a bit - don't want to clog up the post with my news. xx

[Lyndy]

No I haven't had this either but can sympathise with getting nervous about side effects- I've been on so many drugs (cancer and rheumatoid) where the list of possible side effects is the length of short novel. I always remind myself that I might get them but equally I might not. Hope it all goes well for you...hopefully the side effects will keep themselves to themselves xx

[couls]

Hi, are you starting the niraparib straight away after the avastin or are you having a break from the avastin ? Is your cancer showing a recurrence now ? Is that why they are changing the drug or is it they think it will work better than the avastin ? Sorry for so many questions, but I am self funding avastin and just want to now what the criteria is to get niraparib as I thought I had read it had to be started within 3 months of chemo. It's just so I can go back to the oncologist armed with more information.

Thanks Val. X

[Nicky100 in reply to couls]

Val and above, they are just starting to roll out the Niraparib Compassionate Use a Programme as we speak and it is now becoming available through your oncologist.

You can start it after 4 cycles of chemo and I think you might need to be 'tumour-free' persay e.g. Nothing showing on a scan, but this could well be different with different ovarian tumours. We are all different! It can be started within 8-12 weeks of chemo ending.

It should be fully-available by this September!

Nicky xxx

[couls in reply to Nicky100]

Thanks Nicky , I thought I had read somewhere about it having to be started within 3 months of chemo ending. It's just the money is starting to run out for the avastin and I was hoping I might qualify for something I don't have to pay for. The stress of trying to fund raise is a nightmare as you will be aware of , I keep telling everyone I'll be on the street corner soon with a bucket ! Lol. I hate being in this position after working all my life I'm now begging to live. It's a good job I can laugh about it or I would probably give up.

Take care Val. X

[Nicky100 in reply to couls]

Val I might be able to help... have you tried crowdfunding?

[couls in reply to Nicky100]

Hi, my daughter, friends and family are doing the Yorkshire 3 peaks on Saturday September 2nd and she has set up a just giving page again. They all did it on the same day last year. I feel as though I am taking off the same people all the time. We share the just giving page on Facebook among our Facebook friends. Is that the same as crowdfunding ? I'm not really up on the technology of how to do things. One of the problems we've had is trying to get the local paper involved, my daughter has tried everything the local paper and news and no one seems interested that there are people fighting to live and having to pay for their own drugs. If you have any ideas I would be very grateful.

Thanks Val. X

[Nicky100 in reply to couls]

PM me Val. I will give you some tips of how to widen your audience, perhaps you could get a different and strong story into the local paper? That will widen your pool of people and you will be amazed at how people will want to help you. It is really possible. You might need to find a different person at the paper etc. A few months back, I was just like you. Now I have tried other things and please have faith you can do it! I know just giving and think that it works but you could look at how your story is written too? Does it 'market' what you are looking for?

I will try and help you xx

[valo in reply to Nicky100]

Thank you all for replies and kind thoughts. It does help to hear from other you. I will let you know how it goes. Best wishes to you all XXX sorry about spelling

[Numi]

Hi. I've just completed 6 cycles of Carbo/Caelyx for recurrence, and am starting Niraparib next month - it has to be started within 3 months of a platinum based chemo according to the information I've been given and only if that has been successful. My oncologist mentioned getting the treatment for me when I started this chemo but have had to wait until a recent CT scan showed reduction in tumours to be accepted. I'm wary of side effects too, but would rather have treatment to keep the cancer at bay as long as possible, as having a recurrence after just 6 months made me feel I was going back to square one.

[chrissapam]

am on it....not over the moon about seeming side effects...but wonder if actually it is not working well for me. Apparently other people have similar so at least am not imagining....won't detail here as are somewhat vague and suspect I could cloud your judgement! However, I would certainly recommend giving it a go from my experience....message me if you want to know more detail...love Chris x

[coalole]

I am on carboplatin and caelyx for a recurrence and my consultant mentioned this as a possibility. Despite the compassionate use thing meaning the drug is free my hospital is refusing to give it because of the cost of appointments and blood tests (post code lottery) so I may have to be referred elsewhere (Bristol) which would cost me more in time and petrol. I'd almost rather pay the money to Exeter. Still it may be approved by NICE by then.

Good luck with your treatment.