#Stage4Lifer, In Treatment for Life: What “Pretty Normal” Looks Like

September 28, 2016

Hear My Voice Advocate and Camp Chemo Author Camille Scheel shares what "pretty normal" looks like as a #Stage4Lifer in the EMBRACA clinical trial.

SEPTEMBER 6, 2016: Waiting for test results is never easy, yet it’s a fact of life with metastatic breast cancer. Today,  I’m going to the clinic for blood work. Specifically, to make sure my platelet, white and red counts are at acceptable levels. The requirements are extra stringent because I’m on the EMBRACA clinical trial.  Over the five months I’ve been on this trial, there have been times where my numbers have not cooperated. Now if they aren’t in line even just one more time, I’ll be disqualified from the study.  As I write, I’m not sure what my numbers will reveal later today.

The thought of ending this clinical trial makes me so nervous. Knowing I was randomized to receive the study drug, I’ve been so happy to be on this trial. This medication is keeping my cancer stable. The best part is, it’s doing so with almost no side effects. My energy, strength and digestive system are the best they’ve been since before I was diagnosed with metastatic breast cancer.  But like most things with this disease, I’m not in control. There’s no way to cheat on a blood test. Yet, if I could, honestly, I would. Having a life that feels pretty normal is something I won’t easily give up.

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What does “pretty normal” mean for me? It means I’m able to eat most anything I want without mouth sores or abnormal weight gain. These days I rarely need an afternoon nap to maintain my energy levels.  I’m even able to move my body for my household chores without getting sore. Not everyone who enrolls in a clinical trial has such an improved quality of life, but for me it’s been a nice surprise.

Early on in my metastatic journey I thought clinical trials were only for people with no other FDA approved medications left. While it’s true some early phase trials do seek patients who have run out of treatments, many more trials are geared to people who are still healthy enough to have other options. We always need other options because metastatic breast cancer eventually outwits even the best of medications.

Treatment for life means always looking ahead to the next treatment. Sometimes this means asking my oncologist about existing FDA approved drugs, and sometimes it means researching existing clinical trials. BreastCancerTrials.org is one way to do this, but talking with other patients and your oncologist is key to finding one that’s right for you. Okay, deep breath - going in for my blood work now!


AFTERNOON: Just returned from the oncology clinic. My numbers are good! I can stay on the study! Next week will be another set of blood work, so soon, I’ll be right back to where I was earlier today worrying about my test results. But for the next seven days, I’ll do my best to relax.

The study I’m on, EMBRACA, is still seeking participants. It’s a bit of a needle in a haystack situation. Patients must have the BRCA genetic mutation, an area of metastasis large enough to follow, and free of many other major medical issues.  If you or someone you know wants to learn more about this study, visit https://www.embracastudy.com for more information. Many other studies are seeking patients. It would be tragic to lose medical research for lack of participants.

Being part of medical research has improved my quality of life. Together, we can make a difference that will help not only ourselves, but future generations.

Watch Camille talk about clinicial trials and treatment for MBC.

You've heard Camille's voice. Raise yours. Join #Stage4Lifer on social media.

Camille Scheel is author of Camp Chemo: Postcards Home from Metastatic Breast Cancer, published in October 2015. The book is based on her Caringbridge blog. In February, 2016 she partici-pated in reviews of breast cancer research in Washington, DC for the Department of Defense Congressional Funded Medical Research Program. Camille was diagnosed with ER+ BRCA2+ Stage III Breast Cancer in 2007 and bone metastasis in 2012. She lives with her husband Wade (a potter and painter), daughter Vivian (15, a musical theater actress), son Jackson (9, a gamer), Siamese cat, ShuShu and a darling little 5.5 pound Chihuahua, Lupita.

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