Nerlynx
I am Her2+ and E+. I have just finished 12 months of chemo, radiation, last Hercepton on Thursday and ongoing Letrozol. Adding Nerlynx to the list of treatments has been an option for me however my oncologist has just let me know that it now no longer available for free on compassionate grounds by the company. It is being subsidized I believe but I would still have to pay $18000 for the year of tablets if I am eligible. The side effects sound awful :( I would love any feedback from anyone who has been on Nerlynx as to the side effects and thoughts on this.
Immunotherapy Atezolizumab (Tecentriq) Metastatic Triple Negative Experience
I just wanted to share my experiences with accessing the immunotherapy drug Atezolizumab (Tecentriq) that is currently not on the PBS (but hopefully will be soon!). In 2017 I was treated for TNBC stage 3 breast and lymph nodes, had 3 amazing years of good health, family and travel, then in March 2020 found an enlarged lymph node in my neck, same side as the BC. It took several ultrasounds (originally diagnosed as a vein) and then a biopsy to find out if was a small 1cm met tumor. I was referred to a trial at Peter Mac, but after testing (PDL1 Positive) found out the tumor was too small to qualify. Then referred to a different hospital for the same trial, waited 4 week for the tumor to grow only to find out the same thing, however was given the option of self funding through the private system. I had at each hospital ask about this, and somewhat annoyed that I was given a rough cost per treatment, not the compassionate deal that the pharmaceutical company was providing - $25K for 5 treatments, then no cost thereafter provide there is a response to treatment. Referred back to my original oncologist who completed all the paper work to the pharmaceutical company (Roche) and my private health insurance, who would be covering my private hospital day stay costs. I was waiting anxiously for my first treatment bill from Roche when my Oncologist called me to say my Private Health Insurance had agreed to pay the full costs (except the hospital excess) of the Tecentriq drug! Needless to say I was overwhelmed by both my private health insurance and my oncologist who completed all the paperwork. I've now had my first full round of treatment (3 weeks on, 1 week off) and can already feel changes in my neck. I don't know how long I will be on the drugs for, or how my body will react, but think it is important for others who may be in the same situation to know that if a drug is not yet available on the PBS, there still maybe ways of accessing it. Just as a side note, the trial I was referred to was stopped as it was using Tecentriq with Taxol and did not show any benefits to Taxol on its own. The previous trial to this for Tecentriq was with Abraxane which had shown a benefit - this is the combination I am on.
Diep reconstruction
My surgeon has recommended (diep) this for me. I’m not sure about this and the out of pocket price is staggering! Between $10,00 and $20,000 that’s even with top hospital coverage !! Does anyone know if this type of reconstruction is done as a public patient? If so and where in Sydney. Thanks in advance.
Single or double mastectomy
Since being diagnosed with Stage 3 Inflammatory Breast Cancer in March I have been pretty clear that I want “a double mastectomy, no reconstruction and fab tattoos”. My breast surgeon is actually the guy who first broke the news to me when I ended up in hospital thinking I had an infection and I have seen him twice since. He has always said that having a double didn’t make recurrence less likely (I have a tumor in my right breast and there were some cancer cells in my lymph nodes) but that we will take about it nearer the time. Well, I see him next Friday prior to finishing Chemo in 2 July and my oncology says surgery will be around three weeks after that so now it is time. I know I am the only one who can decide but would love to hear from others who had to make the same decision. Lumpectomy is absolutely not an option, it’s one or both off. I am also wondering if choosing a double will have cost implications, I have found out about gap fees in the private system the hard way so if he says it’s not medically necessary is that the choice taken away from me as I certainly can’t fund it? I would be very grateful to hear what others did.
Makes me see red
I read, today, an intersting article on the ABC website about some of the issues faced by rural and regional people who have breast cancer or are at high risk of developing it. I'm not as remote as the woman who was featured, but even here there are struggles. One of the biggest issues is affordable specialist care. There are few, if any, public services and you do not always get informed about them. You get referred to the company that covers your region even if there are more affordable services within reach. I've spent ten years fighting this fight, and I know what the facts are. ABC interviewed an oncologist who agreed that, yes, there are unique challenges that lead to poor outcomes for county folk. Distance is one thing, cost is another. If you are on a pension or low income and have to fork out specialist fees that are well above the metropolitan rates it makes a shitty situation even worse. It is a pity ABC did not ask that individual what they, and their business, was doing to address equity of access for rural and regional people. I really do wish they had asked that. I wonder what the answer would be? Last time I asked a member of that business that exact question, in a public forum, the response was 'Be careful what you wish for, you wouldn't want to be waiting in clinics like the big public hospitals.' Really. Most of us have either money or time. You should not have to go into debt to fund services that are bulk billed elsewhere. This shit infuriates me.
New Drug
A bit of a long shot, but thought I would ask. I finished my last herceptin a month ago. My oncologist just called today offering a new drug made avaiable in tablet form. This is to be taken for 12 months. Suppose to improve chance of recurrence over the next 5 years by 5% in most cases. He said could even be more for me as I had one hell of a tumour. This drug also comes with a price $24000 and size effects. I didnt ask what it was called but I wish I had of. Might check in with my breast care nurse tomorrow. Does this info sound familiar to anyone? I already forked out $10000 to pay for Perjeta as part of my treatment plan. So more money is really out of the question. I just had my first lot of scans early this year and they came back all good.
