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4th Covid jab?
Sorry if this has already been discussed, but I haven't been on here for a while. Are any metastatic people getting 4th Covid jabs? I'm 42, 3 jabs done392ViewsSign in to react to this post7CommentsRe: Ibrance on the PBS
Thanks Anne94, that gives me some hope. I don't need it yet, thankfully, but when my current drug stops working, I think palbociclib or ribociclib is my next best bet. At least I think Ibrance is now capped at $40,000 (8 months worth) and then is free after that for those who are on second/later line treatment. Now for a little rant - I'm not surprised that Ibrance is only on the PBS for first-line treatment at the moment, but it is frustrating that the government gives themselves a big pat on the back for listing it on the PBS in the budget, when it is only available to the women that already have access to ribociclib. It's not like this group of patients is accessing both ribociclib and palbociclib simultaneously... I'm not sure of the stats of women who respond to one of these inhibitors and not the other, but I imagine it would be a small portion. And if true, adding Ibrance to the PBS adds little extra value, and still ignores the large numbers of women who could definitely benefit from it and still cannot access it. Rant over.47ViewsSign in to react to this post0CommentsRe: Olaparib / PARP inhibitor
Yes I sometimes feel nauseous with it too, and it has suppressed my appetite (although no major complaints there!). I agree it can be a bit inconvenient, but now I take it first thing when I get up and then around 6pm or so which has worked out OK. I'm located in Sydney. Happy to chat about it whenever you want - just message me!22ViewsSign in to react to this post0CommentsRe: Olaparib / PARP inhibitor
Hi @bronmeg1! I am going really well! Have been taking it for over 14 months and just had some scans showing everything still stable... I've been tolerating it very well so am very lucky and happy with how it has been going. Fingers crossed it continues like this for forever more!! How are you going on it?!17ViewsSign in to react to this post0CommentsRe: Two steps forward, one step back – news on access to CDKs in second line treatment
This is at least a step in the right direction. Can you please clarify what the restrictions on second line treatment are? I have had chemo, and am currently on a parp inhibitor. Would I be eligible for this access program if the parp inhibitor stops working and I want to try Ibrance? Thank you.18ViewsSign in to react to this post0CommentsRe: Ribociclib now available in Australia
I have been spreading the word far and wide today! Social media, friends and family... have already shot off some emails, and will be printing off a bunch of letters soon. Are there any plans for a media release for this campaign? Any newspaper articles or a spot on the Project perhaps?!20ViewsSign in to react to this post0CommentsRe: Ribociclib now available in Australia
Does anyone know of any current petitions to get palbociclib and/or ribociclib on the PBS? I know BCNA had one last year but I'm not sure that's still active. I have many friends and family wanting to spread the word - we need to keep the pressure on!84ViewsSign in to react to this post0CommentsRe: Alaparib
Yes I'm on it. It's better than chemo there - you will get to keep your hair! But it's a bit of a pain as you take 8 tablets in the morning and 8 at night, ideally on an empty stomach so you have to plan your meals around it. I have lost my appetite too, and sometimes have some mild nausea, but apart from that it is pretty good. My energy levels are pretty good. All the best with it!27ViewsSign in to react to this post0Comments
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Living with metastatic breast cancer
This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.
