I was diagnosed with MBC in Nov 2011 (first diagnosis: mets to liver, bones, lung & brain), and have been feeling very well for years on Herceptin. However, this month, there has been new growth in the breast & supraclavicular lymph nodes - so there is some cancer that has become resistant to Herceptin. I would like to begin Perjeta (pertuzumab), but this is currently only financed on the PBS as a first line treatment. I'm ineligible as I've already had a HER2 targeted therapy... even though Perjeta wasn't available back when I was diagnosed (insert frustrated eye roll)!!!Has anyone in a similar situation had success in getting subsidised access to Perjeta and would like to share how please? (To pay privately, I'd need to pay $6269 for the first dose, then $3197 every three weeks after that, which is not sustainable.)Appreciate any suggestions or stories of successful access for those of us with HER2+ MBC diagnosis prior to Perjeta coming on the market.

@Riki_BCNA I just wanted to update you that it looks like Roche have agreed in principle to include me in an access program where they pay every third Perjeta treatment. (My oncologist contacted them directly). Obviously this is still very expensive and won't be sustainable long term, but we are thinking we will try to self fund for a few months to see if it's working and hopefully in the mean time it will be considered for funding as a second or subsequent line of therapy for Stage IV HER2+, or I'll have some evidence to push my case. I will let you know how it goes, as I have to sign some paperwork tomorrow morning.Best regards,Keely

Hi @KeelyB Whilst I'm not in your position I cannot believe the idiocracy of this.Perhaps your oncologist can contact the drug company directly and request they consider you a special circumstance. I know they have done this for others requiring treatment for Estrogen cancers. It's worth asking if they could consider this since perjeta wasn't available when you first started treatment .I guess they may offer to test and see if improvement is noticed with the addition. The cost is out of most people's reach otherwise. Hope they will try for you. Your bc nurse might be able to help push this for you. Also..will they re-biopsy these areas to ensure no pathology change? ..I believe sometimes cancers can do this and therefore require a new plan of attack. Kath x

Thanks Kath @primek We did a biopsy and the pathology is still HER2+, so no change there meaning it's become resistant to Herceptin. We are trying to find the contact at Roche to write to and explain the situation... fingers crossed we get a compassionate response! The existing company access programs don't appear to apply to my situation.Appreciate your message, thank you.

Oh my this is just so not right. @primek has some good suggestions and hopefully @bcna can advocate for listing on the PBS. I'm hoping you receive a compassionate response from Roche.

Here's hoping Roche will respond. Please update us how you go. X

Perjeta access as second line treatment for HER2+ MBC - suggestions please

23 Replies

KeelyB
Member
7 years ago
@Pamelamary hope you don't need to change, but if you do Perjeta is honestly great - feel as normal as just on Herceptin.
kmakm
Member
7 years ago
Congratulations @KeelyB! Wonderful news! K xox
Kattykit
Member
7 years ago
That's wonderful news.
Pamelamary
Member
7 years ago
Keely,
I am so pleased Roche has come through for you. I suspect I am about to be in the same situation as things seem to be on the move gain after a long time stable on Herceptin. I hope there are some responses to your post.
Best wishes..... Pam
SoldierCrab
Member
7 years ago
KeelyB hope that it is something that is granted soon as it is working for yourself and others as a subsequent line of treatment.
Giovanna_BCNA
Member
7 years ago
Hello @KeelyB
That is great news! I have contacted our policy team today for an update regarding Perjeta. Will be in touch shortly with some information. So great that the treatment is working for you and that the financial burden has been lifted! Its a great win for you!
iserbrown
Member
7 years ago
@KeelyB That is fantastic news! woo hoo!

Take care
KeelyB
Member
7 years ago
A very exciting update - my oncologist contacted Roche again on my behalf and they have agreed to fund Perjeta for the next 6 months, with a review after that. I am ecstatic!
So if anyone else is in my situation, I suggest talking to your oncologist. I guess some may see this as a relatively short term fix, but life with MBC is made by adding all these short terms together :>
KeelyB
Member
7 years ago
Hi Everyone,
It's been a year since I started self-funding Perjeta (I did 9 rounds of Taxol + Perjeta + Herceptin, now just on H+P). I feel great again, my scans are stable (no sign of the new growth from last year) and bloods are normal. However, I'm still self-funding under Roche's "Compassionate" Access program where they pay every third dose.

My frustration is I've paid for a year now to prove that Perjeta is working for me as a second line of treatment. My quality of life is excellent, but the financial strain is huge. Is there any progress in getting Perjeta approved as a subsequent line of treatment for MBC? My understanding is Roche haven't applied to TGA or PBAC for approval as a subsequent line of treatment? Has anyone heard of any trials for Perjeta as a second line of treatment? Is BCNA planning any further advocacy for patients in my situation?

Thanks for your advice,
Keely
KeelyB
Member
8 years ago
Hi Teagan,
I feel for you & your Mum and apologise for taking so long to reply.

I am stable again, per my latest scans about 10 days ago. We've paid for four cycles now ($12,600 + compounding fees for the two "free" doses I've had from Roche through their compassionate access program, where I get every third dose free). It's proving very stressful to be honest, watching our mortgage grow again. And because I'm getting Taxol with the Perjeta & Herceptin, I'm not feeling super either. My goal in paying for Perjeta was to hopefully feel as good as I did when just on Herceptin... it hasn't come to fruition yet :> I have asked my Onc how long I'll be on Taxol, but she hasn't given a target number of cycles. I will soon need to decide if I can afford to wait for the quality of life benefits of Perjeta & Herceptin without a cytotoxic agent.

I honestly hope BCNA is advocating to have Perjeta available as a subsequent line of treatment, just as they plan to for the newly approved Ibrance. Now I know Perjeta is working, I plan to make an appointment with my Federal MP to explain it's the hope offered by new treatments coming in the pipeline that enables MBC patients and families to look toward the future & get through the tough days. If these new treatments are inaccessible to existing MBC patients, it takes away that important hope. And the total cost to the PBS is similar as if I'd gone onto TDM-1 anyway!

My best wishes for your Mum and the decisions ahead, I'm sorry my answer is not definitive either way.
Keely