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Dying to Get Into a Trial

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Published on August 24, 2017


Imagine living your life as healthy as you can. You make all the right choices and eat your veggies. Heck, you even become a vegetarian. You read that eating an alkaline-based diet gives your body the environment in which pathogens and cancer cells can’t live. You practice yoga, meditate and pray. You hike, bike and swim. You mind your words and your thoughts, letting go of any negative emotions, replacing them with love and forgiveness. Your job is one of service. You help people make better life choices. You practice what you teach others, and yet your body starts giving you more and more problems.

I first ended up in the ER with the flu in January 2012. Flu is something I had never been diagnosed with before. Next, I got a nagging cough that just did not want to go away. I was walking around with a low-grade fever, yet the pulmonary specialist couldn’t find anything wrong, and my regular doctor brushed it off as asthma. At the same time, my back, which had given me trouble for quite some time, started to get worse and worse. I was experiencing severe fatigue like I had never felt before. I blamed many of my symptoms on the fact that I was a massage therapist and a single mom, working long hours and wanting to do it all. One day, a co-worker tried to help me with my back. And while he massaged me, we heard a loud pop followed by incredible pain. This later turned out to be a broken rib. Still, I did not like going to doctors. The holistic movement was so ingrained in me that I reached out for herbs, green juices, acupuncture and chiropractors. The pain did not get better; it only got worse. One morning, I stretched in front of the mirror. And as I raised my left hand above my head, I heard another pop, which turned out to be another broken bone. The pain became relentless as it moved from one place to another, places where my bones were being destroyed by the cancer. For a week, I could not raise my hand to grab dishes and food from the pantry. I barely made it up the steps to my apartment. I decided to go to the doctor again, yet they could find nothing wrong. They looked at me suspiciously. I looked too good to be that sick. The pain pills I asked for must surely not be as necessary as I say they are, and so I got the lowest dose which barely touches the pain.

After living this way for six months I said, “Enough is enough!” And my friend took me to the ER. Two hours later, the doctor walked in and without looking at me tells me I am severely anemic and have cancer. The CT scan I had asked for six months earlier (but was refused at the time because “Insurance companies frown on expensive tests”) found three tumors on my spine. The ER doctor can hardly believe I am still walking. He wants me to stay in the hospital, but I have to go home to my baby who just turned 7 and needs her mommy to feed her and tuck her in.

My story is not an accidental incident. This happens all the time right here in the USA. In November of 2012 I was finally diagnosed with multiple myeloma, a rare blood cancer that attacks the bone, is incurable, but treatable. Because I was young and healthy, the doctors didn’t seem too concerned and assured me that these days many myeloma patients live 10 years or more. Frankly, when you are 44 and your daughter is 7, 10 years barely sounds like a good deal but, with my healthy lifestyle, I figured I surely would be one of the lucky ones. The oncologist told me I would have a few induction chemo rounds to get me ready for a stem cell transplant which would likely put me into remission. Although it is never good to think about what could have been, we all go there. What if they found the tumors six months earlier when I went to urgent care and asked for a CT scan? Instead of stage III, the worst in myeloma, I might have been diagnosed at stage II, or even stage I. This would have made my outcome much more positive.

Now here I am, four years and nine months later, with no treatment options left. I have never been off chemo during these years other than a couple of weeks here or there, because I wanted to go on vacation or to give my poor immune system a chance to recuperate. In 2012, we all had such hope! Multiple myeloma research had come so far and there were many new therapies that would surely buy me many years. Sadly, I am one of those unlucky patients who went through these novel agencies at a ridiculous speed. Within months, one promising drug after the other stopped working and we would move onto the next...until there was no more next. We never could have guessed that within five years I would go through every single chemo cocktail.

Lucky for me, there is now a very promising trial going on. The CAR-T trial, which uses the body’s own T cells to kill myeloma, has shown great success! Sure, it is not an easy treatment but it has a real chance of knocking this vicious cancer out once and for all. The problem is that I, like many myeloma patients, might not get this treatment in time. This is probably the toughest pill I have had to swallow since my diagnosis. To be so close to something that may give me more time with my family, and my sweet little girl, who at 11, still needs me so very, very much. 


Many people are literally dying to get into this trial. There are people who still have other options who are getting into this trial before us, the ones without option. For them this is not a matter of life or death. It does not seem right that those of us without options won’t be treated first. In writing this article, I hope to put a face to this very sad reality that many of us face. I don’t know what can be done. But if my story can help in any way, then I am glad I took the time to write it.

Hope & Love,

Cherie Rineker
Author: "A Pilgrimage Without End, How Cancer Healed My Broken Heart"

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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