GTx-024

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Changes

Published April 30, 2017 by Deb Ragosta

Ch-ch-changes – Pretty soon now you’re gonna get older – Time may change me

But I can’t trace time – I said that time may change me – But I can’t trace time.                                                                                                                                                – David Bowie

Of all the rock stars and actors of my generation who passed in 2016, the loss of David Bowie early in the year represented the beginning of the end of the stars of the baby boomer generation. Radio stations played his music and we were reminded of how much like a chameleon he was in the fifty or so years of his fame. One of his earliest hits, “Changes” from the 1971 album, “Hunky Dory” was written when he was young and on the road to international and eternal stardom. Even at the beginning of his career, David understood that in this life and the journey we take through it, regardless of who we are and our plan for the future, we can count on one thing – change. Change can be planned, or can be the result of things totally out of our control. How we accept and adapt to change can make the difference between having a wonderful life and one full of regrets over life choices that may have led to unplanned and or unwanted change.

Those diagnosed with stage 4 breast cancer (or any cancer) face change from the moment they hear the words, “your cancer has spread” or “you have cancer.” Some can never get past hearing those words. They are facing change, but may never be willing to actually accept it. For many, especially those diagnosed at stage 1, treatment ends and they are adamant that having cancer did not change them. Their hair grows back, the appointments end and they go back to their pre-diagnosis lives. They are proud to be survivors.

I am now in my 8th year since being diagnosed with metastatic breast cancer. I left my job at the end of 2014 and applied for Social Security Disability (more for my back condition than for the breast cancer). Leaving my job when I did was a huge and unexpected change for me. I learned from it that the anger I had as a result of the situation was because I didn’t choose that change. It was handed to me without my input. Now, however, after much thought and reflection, I know it was time to leave the job I loved because my back condition made functioning in a full-time job more and more difficult. 

Tomorrow is May 1st and I’m facing a another huge life-change. Since I’ve been collecting SSDI for 2 years, I automatically qualify for Medicare (even though I am under 65) and it goes into effect tomorrow. I’m not quite sure this was a change I would have chosen had I been given the choice. The amount of my monthly disability will decrease by the amount that will be taken out for Medicare Part B. Then, I had to find a Part D drug plan (Medicare actually picked one for me) and don’t even ask me about that damn “donut hole!” I’ll deal with that change when I get there! Luckily, my pre-Medicare health plan will automatically become my Medicare supplement, but I cringe at the thought of getting stacks of bills that I have to spend hours on the phone trying to straighten out! To paraphrase Bowie, (I must) turn and face the strange (and believe me – having Medicare is sure to be a strange change!)

The other change I am experiencing is one that I chose and one that I can change at any time. When I was first diagnosed in 1990, I was on a clinical trial for 5 years. The drug I took was tamoxifen, which, as you may know, is now the standard of care for breast cancer patients whose tumor is positive for estrogen and or progesterone receptors. I did well on the drug and credit it for keeping my cancer quiet until 2009. Although my cancer is still in my bones, only, I felt it was time to participate in another clinical study. A slight progression last year qualified me for the trial and I began the study medication 3 weeks ago. The drug is Enobosarm, but in the trial information, it is referred to at GTx-024. It’s a phase 2 study (which means it’s already passed the “safety’ test) and I was randomized to get 9 mg/day. The other group gets 18 mg/day. The purpose of the trial is to see which dosage will give the best results for patients with my type of breast cancer (estrogen positive.) I am doing the trial at Dana-Farber Cancer Institute in Boston (I am a patient at one of the DFCI satellite clinics.) If my cancer progresses while I’m on the study, I will go back to taking Ibrance. Like Ibrance before, GTx-024 is being fast-tracked by the FDA, so hopefully, this change for me will help result in another drug for other patients with stage 4 breast cancer. I like to think my trips to Boston to participate in this trial will result in a world in which my daughter and granddaughter can live without the fear of metastatic breast cancer.

Although almost twenty passed between my stage 1 and stage 4 diagnoses, I was and am determined not to let having breast cancer change the woman I am. That is different from facing and accepting the changes that come with living with a terminal disease. Yes, David – pretty soon now (we’re) gonna get older. Time may change me, but I can’t trace time. I said that time may change me, but I can’t trace time. What I can do, however is turn every change – planned and unplanned into a positive way to help me travel this journey I’m on.

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

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