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Immunotherapy Atezolizumab (Tecentriq) Metastatic Triple Negative Experience
Jen001
Member Posts: 31 ✭
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.
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.
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Comments
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Hello @Jen001 thank you for you post and great news to hear that you are responding well to treatment! Wishing you well
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Thanks Jen. My oncologist is talking about this. I see him next week for more information about cost etc. I am currently on IV nab - Paxataxel and I think the plan will be to have the two together. My tumour markers have been rising over the last couple of months and I'm having a PET/CT scan this week to check progress. I have met in my spine, pelvis, ribs.
Feeling a tad anxious!1 -
Jen this is great to hear. With your private insurance was it your extras that paid for it or was it part of your hospital cover? I had 5 rounds which I paid for and never knew this could be covered by phi! Which health fund are you in if you don’t mind me asking0
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It was part of my hospital cover Nuala. Did you have the same immunotherapy?0
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Yes, we have put it on hold though because it didn’t look like it was working.. I’ll investigate the hospital cover for it. I’m now doing a trial of another immunotherapy1
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Thanks for your replies. My scan results came back "mixed" ...some lesions had improved but others had popped up. Because of this my oncologist is changing me to Pegulated Liposomal Doxyrubicin.....gotta love these names!! I will be having that once every 4 weeks and the immune therapy every 2 weeks.
He said my HBF would cover some of the costs.
Its nice Jen to get some positive news from your treatments. I'm hoping this will work for me!0 -
The trade name for the new chemo I'm starting is Caelyx. Anyone had any experience of this one??0
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I had not heard of Caelyx so I did a google search. It is just Doxorubicin (also known as Adriamycin or the 'Red Devil') formulated differently. Doxorubicin has been used for a very long time and it is the chemotherapy that we all think of when we hear about someone having to undergo treatment for cancer - eg nausea, vomiting, hair loss etc. It is formulated so that it circulates in your blood longer and hence is longer acting. I imagine the side effects are similar to those of Doxorubicin. Let us know how you go.0
