Unsure about radiation and scared about endocrine therapy, Abemaciclib in particular!
Hi all, I am 40 years old. I had a skin and nipple sparing mastectory on 27 Nov and then further surgery on 4 Dec after my testing revealed a much big mass than expected. My nipple, additional skin and part of the breast capsule was taken - no cancer in any. I was diagnosed with multifocal cancer. Largest mass 5.4 cms. Grade 1. 4 lymph nodes taken which were all clear. ER and PR positive. LVI - nil. KI67% - 1%. I have seen an Oncologist and Radiation Oncologist this week and was also presented to the breast cancer panel a couple of weeks ago. Recommendations are possible chemo and radiation. I have done Onka Type testing and waiting on results. I have questions in relation to: - Radiation - to do or not to do; - Hormone therapy - people's experience and whether to do everything recommended. 1. Radiation Recommendations were on the fence for radiation and I have been told it is my decision, they cannot really recommend one way or another. On the one hand mass greater than 5 cms and my age, on the other, all lymph nodes clear and all good markers, given the additional surgery we have really good clearance margins, plus I will be doing hormone therapy. The risk of secondary cancer from the radiation is scary, I am not sure about the indicators all seem pretty good save for the size. If the Onka type testing shows a low % chance or recurrence I am not sure it is a risk worth taking and putting myself through that when I also have what seems like a quiet aggressive hormone therapy plan. 2. Hormone therapy My Oncologist has recommended - Letrozole for 5-10 years, Goserelin injections monthly for 5 years and Abemaciclib for 2 years. The list of all of the possible side effects from these drugs and the length of time I will be on them is probably the thing I have found most difficult to process/face to date. The Abemaciclib in particular. I was advised this is not yet on the PBS in Aust but we can get access on passionate grounds. The potential side effects with this one seem so serious and I am nervous that it seems it has not been used widely in Aust. Given all of the markers of my cancer, save for size, were all so positive I am uncertain about it. If anyone has experience with any of these treatments and could share I would really appreciate it.
Two new compassionate access schemes for metastatic breast cancer patients - 17 June 2020
Hello everyone, BCNA is pleased to advise that after many discussions with relevant pharmaceutical companies, two new compassionate access schemes are now open for patients wishing to access a CDK4/6 inhibitor for second or later line treatment of hormone receptor positive, HER2-negative metastatic breast cancer. To enquire about either of these programs, please speak with your medical oncologist. Ribociclib – first and second line treatment (Novartis) The SPARK Plus access program, being offered by Novartis, allows eligible patients to access ribociclib (Kisqali) free of charge for first and second line treatment. In this setting, ribociclib is given in combination with fulvestrant (Faslodex), which is not currently available through the PBS. Fulvestrant is not provided as part of SPARK Plus and must be accessed independently, which will incur a cost. AstraZeneca currently has an access program for fulvestrant as a monotherapy. BCNA is not aware if the program is being extended to patients wishing to use fulvestrant with a CDK inhibitor. Please speak with your medical oncologist. Abemaciclib – third and later line treatment (Lilly) Lilly has opened a special access scheme to provide abemaciclib (Verzenio) for third and later line treatment. Patients will be assessed on a case by case basis but must meet the eligibility criteria for the MONARCH1 trial. These include: Prior endocrine therapy (but no prior CDK4/6 inhibitor) At least two prior chemotherapy regimens, with at least one but no more than two in the metastatic setting and one must have included a taxane Adequate organ function Measurable disease according to RECIST v1.1 ECOG performance score of 0/1. In this setting, abemaciclib can be given as a monotherapy or with fulvestrant. PBS applications for ribociclib and fulvestrant The July meeting of the Pharmaceutical Benefits Advisory Committee will consider applications for ribociclib for first and second line use, and fulvestrant in any line of treatment. BCNA has provided a submission to PBAC in support of both drugs. The outcomes of the applications are due by the end of August. For more information, see the agenda for the PBAC meeting.
Anyone on a drug trial?
First time poster: I had a mastectomy in October last year, 6 months of chemo and have had 9 sessions of radiation with 16 more to go. I have been asked to join a trial of a drug called Abemaciclib and have to make my decision very soon. I really don't know whether to participate or not as the side effects seem too much like the bad side effects that I endured during a horrific six months of chemo. As I live in a small town it also means travel of a 4 hour return journey to a regional city to attend hospital. Is anyone already on this trial or have been asked to join?