By Ed Miseta, Chief Editor, Clinical LeaderFollow Me On Twitter @EdClinical
Most folks know that your life can change in an instant. For example, the moment you meet someone that you just know is meant to be your soul mate, the moment you found out you would be a parent, or the day you started a new job that you wanted your entire life. But other times your life can change in unpleasant ways, and that happened to me last year.
It started innocently enough. It was a nice spring day in May 2021. I remember it well because I am from Erie, Pennsylvania and we do not get many nice spring days in May. The previous fall I had cut down a couple bushes in my yard and that day I hoped to dig out the stumps. I had my saw, shovel, and pick, and used them to chop, dig, and cut through the roots. It took about two hours, but I managed to get them out.
The next day I was in a lot of pain, which I expected. It was the first yard work I had done in seven months, and I know I am not getting any younger. I decided to take it easy for a few days and assumed the pain would go away.
Unfortunately, it did not go away. And it did not get better. In fact, after a few weeks, I could tell the pains were getting worse. I had pain in my left shoulder that I was convinced was a torn rotator cuff muscle. I also had pain in my left side and severe pain in my lower back. The pain in my back got so bad I could barely sit for more than a few minutes. I also had pain in my right leg that worsened until I was forced to walk with a noticeable limp.
After a few weeks I did go to see my primary care provider. I was convinced the pain was muscle related, although my doctor felt it was bone related. When x-rays showed no bone damage, he sent me for a scan to see what might be causing the leg pain. I went to the hospital on Friday July 2nd to get the scan done, but on that day, I looked really bad. In fact, when I was checking out, the nurse I spoke to was so concerned about my condition she sent me to the emergency room to be checked out.
Tests Lead To More Tests
They put me in a bed, started an IV, and began the requisite blood work. The first thing they noticed was that my kidney function was almost non-existent. I had started taking NSAIDs for the pain. When they did not help, I started taking more. What I did not realize is that even when those medications are not helping with your pain, they can be damaging your kidneys. They also found that my calcium levels were sky high. A doctor decided they would admit me to the hospital. So much for my 4th of July plans.
They needed to run a lot more tests, but a holiday weekend is not the best time to do that. Over the weekend they focused on getting my kidneys back on track, and on Tuesday they were back to running tests.
On Thursday, a cancer doctor came in and told me he saw spots on one of the scans. Those spots, coupled with the pain I was experiencing, led him to believe they might be lytic lesions that are associated with a blood cancer called multiple myeloma. The physician stated he would have to perform a bone marrow biopsy, which he did later that afternoon. The next day he came into my room and told my wife and I that the biopsy confirmed his diagnosis.
To say that was a shocking moment in my life would be a huge understatement. There was no history of multiple myeloma in my family. I tried to eat healthy, and I spent a lot of my free time running and biking. There was no way I could have cancer. But I did, and that evening I received my first chemo treatment. I continued to receive them at the cancer center in Erie for the next five months. During that time, my pain levels improved until I was able to walk and move with little discomfort. The pain in my lower back did not improve but after eight radiation treatments that pain subsided as well.
In December I went to the Roswell Cancer Center in Buffalo to have some stem cells removed. I went back in January to have a blast of chemo that would wipe out my bone marrow and to receive the stem cells they removed. That was followed by the four worst weeks of my life.
Thanks to the wonderful folks at Roswell, I recovered from that treatment as well. After a few months I began working from home and on June 6, 2022, I returned to working in the office for the first time since my diagnosis. I feel better than I have in a year and one week after returning to the office I also ran my first 5k in more than 15 months.
Why I Feel Thankful
By now you might be wondering why I have decided to share this story. I have been covering clinical trials for almost 10 years. In that time, I have developed a growing respect for everyone who works in this industry.
I have had the opportunity to speak to hundreds of clinical executives from sponsor companies. I have also seen and heard the passion they bring to their jobs every day. A few years ago, I interviewed an executive whose company was working on a treatment for a rare disease. During the interview she became emotional and at one point I could tell she was crying. Why the tears? Did they discover a cure for the disease? No. Were they able to improve the condition of patients? No. In fact, the condition of patients in the trial continued to decline.
However, the trial did cause the condition of patients to deteriorate at a slower rate than patients who did not receive the treatment. That is what caused her to be so emotional.
Some may not have understood her reaction, considering the results of the study. However, I am sure she knew that when you extend the life of a patient by one year, one month, or even one week, that is extra time the patient can spend with loved ones, take in a concert or sporting event, walk their dogs, or just sit outside and enjoy the sun. And I am sure that executive also knew that cures do not happen overnight. Drug discovery is a long and tedious process. A small advancement made by one company can lead to advancements by other companies that can eventually lead to an effective treatment or a cure. She knew the discoveries that had just been made were the first steps towards that treatment. That is why she was so emotional, and that is the passion that pharma folks bring to drug discovery every day.
Contributions of Partners
Pharma does amazing work to help patients, but they do not perform the work alone. Several partners assist them with the work. First, there are the sites. Without clinical sites and their qualified staff, trials could not be conducted. Sites know their patients and they recruit those individuals, treat them, and gather the data required to gain a regulatory approval.
Then there are the heroes we call patients. When it was time for me to start my chemo drugs, my oncologist was able to tell me they were FDA approved, how they would help my condition, and what side effects I was likely to experience. But as I was receiving those treatments, I thought about the patients who came before me. At one time, a group of patients were told they had multiple myeloma and there was no effective treatment. They were told a pharma company had a drug that might help their condition. The treatment was not FDA approved, we were not sure what the side effects would be, and in fact we were not even sure it would improve their condition. But we needed them to take part in a clinical trial to evaluate the drugs and see if they worked. Many of those patients thought about it and said, Sure, Ill do it. That is my definition of a hero.
Today I feel better because of their efforts. One of the chemo drugs I took, Velcade, did not exist 20 years ago. Another chemo treatment I received, and my current maintenance medication, is Revlimid, which has only been available to patients for five years. I feel thankful to those patients who helped make these treatments available for me.
There is one group I have not mentioned yet, and that is the contract research organizations (CROs). Everyone involved in drug development knows that drug discovery is not possible without the efforts of those partners. In todays clinical trials, CROs do most of the heavy lifting. A sponsor company can take a drug so far, and then hand it over to a CRO that will take it through a difficult Phase 3 trial and produce the package of information needed for regulatory approval. Drugs would not be approved for patients without their efforts, and I am thankful to those partners as well, who I suspect will rarely get the recognition they deserve.
Pharma does not have the best reputation, and much of the criticism the industry receives in not deserved. So, on behalf of myself and the millions of patients whose lives you have saved or improved, thank you. We appreciate the work you do.
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I Have Cancer And I'm Thankful For The Life Science Industry - Clinical Leader
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