Questions already!: After discussing starting... - My Ovacome

My Ovacome

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Questions already!

27-359 profile image
13 Replies

After discussing starting Rubraca with my onc, I said that I thought it should be started within eight weeks of finishing chemo. He has said twelve weeks! I have never read this, and now I am worried. He does not like to be questioned, but I wish I had done now.

Had anyone else been told this?

Jenny

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win_56 profile image
win_56

No Jenny, my Oncologist said it has to be 8 weeks. I think that the Cancer Fund state this . Speak to Ovacome Administrators, they will advise you, but that what I was advised by my Oncologist, I started 7 weeks after. I wish you all the very best on these parbs.

Caleda4 profile image
Caleda4

Hi Jenny,I was started on Rubraca 7 weeks after my last chemo. I would definitely query this.

delia2 profile image
delia2

Hi. I don’t know your location but if I were you I would get a different consultant. Having cancer is difficult enough without feeling you can’t have a discussion about your treatment with your doctor. God luck!

rosebine profile image
rosebine

On one of my frequent trawls through the net Im sure I read somewhere that Rubraca could start 12 weeks after end of chemo but cant remember where . Glad that your chemo has been effective.

27-359 profile image
27-359 in reply torosebine

I wish I could find that report, as I am really worried. Summer's was a bit off putting and I found him difficult to talk to. I might give Ovacome a call?Have you decided about your op?

Jenny

rosebine profile image
rosebine in reply to27-359

Havent heard anything yet. I still think it will not be a real possibility as nothing changed since refusal last time. On one hand I would be totally terrified to have it and possible stoma, on the other these tumours are not going to reduce and I look 8 months pregnant now.I cant find where I saw about Rubraca, Ive been on so many sites. You could ring the CNS's at the hospital and see if they know?

I find my consultant a bit offputting too, distant and very business like. I was spoiled having Dr Donovan for the first lot. Is this because of (sexist remark ) female docs are more in tune when it comes to gynae conditions.

27-359 profile image
27-359 in reply torosebine

I don't know. I used to get on quite well with him, but now he only works two days a week and I feel that he is just going through the motions.

Jenny

win_56 profile image
win_56

Hi Jenny I have just googled it and on the NICE web it states must be started no later than 8 weeks after last chemo.

27-359 profile image
27-359

Thank you. I will talk to my CNS next week. My on C doesn't take well to bring questioned!!!!

Jenny

mrstadpole profile image
mrstadpole

I was told it was 8 weeks for olaparib due to funding. They were most insistent that I started at 8 weeks. I would get it checked with your CNS nurse xx

27-359 profile image
27-359 in reply tomrstadpole

Yes I will. I am getting myself in quite a state! I have no email address for my onc, who only works two days a week, and his secretary doesn't work Mondays. I will have to leave a message for my CNS, who will not get back to me that day, and I really don't know who to turn to. Would it be worth contacting Macmillan do you think? I really need to talk to someone soon, as I only have a week if I am to get on this protocol.

Jenny

Kkaren profile image
Kkaren

Hi following chemo that ended at the end of August I was to take niraparib. Due to one thing and another I didn’t start this until 12 weeks after. I was on it for about four weeks and then had to take a three week break due to bloods and pneumonia. Went back on it. I feel I was off it more than I was on it anyway it’s not worked. I did ask her on Thursday if the late start may have been the cause but she said we would never know. If I thought it was that I would be really angry and take them to task but try proving it. Back to chemo for me.

27-359 profile image
27-359

Yes the delay is what worries me. NICE and Cancer Drug Fund all state that for eligibility, parps should be started within eight weeks.I will try to contact someone tomorrow, but my on c seems to be doing mainly private work and is hard to get hold of. Neither he or his secretary make an email address to patients!

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