So much to share about my trip. It was so informative and educational. I am still absorbing and processing everything that was shared.
I know this about my platform and how it needs to change:
1) Clinical Trials for Stage IV breast cancer are essential to finding a cure - but without brave patients willing, able, and informed as well as having access to the trials, to be a participant, the trials will take longer or never get the needed data for FDA approval to get the drugs into community healthcare
2) Clinical Trials need to be easier to find and access to the trials need to be expanded to community healthcare (I think they said) less than 2% of Breast cancer patients are participating in trials.
3) Patient Advocates are needed in every area to promote trials and charitable organizations need to help patients find the trials that they are eligible for and access the trial treatment.
4) I understand there are several in the works by private companies but clinical trials.org is not the answer for patients to try and do their own research to find trials that may work for them. We need easier websites for patients to try and advocate for themselves.
More to follow
#thinkbeforeyoupink #stageivneedsmore #clinicaltrials #lucysworld #msabcjax
Living with Stage IV (Metastatic) Triple Negative breast cancer (TNBC) and BRCA1+
Introduction
My Cancer Story -- Continues
My original diagnosis of ER/PR positive, Her2 Negative Stage2b - BRCA1+ with 5 positive nodes was in 2014. I had Chemotherapy, 4 AC and 4 Taxol, Bilateral Mastectomy, Oophorectomy, Hysterectomy, Expanders and full reconstruction - along with 35 radiation treatments. I was then declared "Cancer Free" in March 2015.
I was on Letrozole, daily, which I was told I would remain on it for 5 to 10 years.
However, on Groundhog Day 2017, I was re-diagnosed with Stage IV Triple Negative (TNBC) Metastatic Breast Cancer with a breast cancer tumor in my liver. As my first line of treatment, I joined a Clinical Trial - TOPACIO sponsored by Tesaro, which is a combined treatment of Immunotherapy and a Parp Inhibitor. The drugs are Niraparib (Parp) and Pemprolizumab (Immunotherapy). I have been on this trial since March 2017. ... Read More
My original diagnosis of ER/PR positive, Her2 Negative Stage2b - BRCA1+ with 5 positive nodes was in 2014. I had Chemotherapy, 4 AC and 4 Taxol, Bilateral Mastectomy, Oophorectomy, Hysterectomy, Expanders and full reconstruction - along with 35 radiation treatments. I was then declared "Cancer Free" in March 2015.
I was on Letrozole, daily, which I was told I would remain on it for 5 to 10 years.
However, on Groundhog Day 2017, I was re-diagnosed with Stage IV Triple Negative (TNBC) Metastatic Breast Cancer with a breast cancer tumor in my liver. As my first line of treatment, I joined a Clinical Trial - TOPACIO sponsored by Tesaro, which is a combined treatment of Immunotherapy and a Parp Inhibitor. The drugs are Niraparib (Parp) and Pemprolizumab (Immunotherapy). I have been on this trial since March 2017. ... Read More
Saturday, September 29, 2018
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Blindsided By Stage IV Breast Cancer
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Groundhog Day – 12 months to live or not? On this day in 2017, I was told, in the worst way (if that is even possible) my breast cancer ha...
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Unfortunately with my amazing personal news comes the unfortunate stark reality of Metastatic Breast Cancer #MBC aka Stage IV. 7 people, ...
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