By Doug Olson – Patient
My name is Doug Olson and I am a CLL survivor with a rather unique story to tell. It is truly a privilege to have an opportunity to share my journey with CLL with all of you who visit this wonderful web site.
However, this isn’t just about my battle with cancer – it’s really much, much more. It’s a story of an incredible breakthrough in the treatment of cancer, a story of determined and dedicated scientists and physicians who didn’t give up even in the face of mounting skepticism, a story of scientists unraveling the secrets of the human immune system – it’s a story of hope and survival – it’s a story many cancer patients share -one of cancer diagnosis, feelings of isolation and fear, families that loved us, hope, treatments that gave us more time, treatments that finally failed and then the gift of life – so this is their story too.
My story begins almost 22 years ago in 1996, when I was diagnosed with cancer, Chronic Lymphocytic Leukemia. Back then there was no cure for CLL except for a bone marrow transplant, but that procedure only had a survival rate of 50% – not very attractive odds. My prognosis was I had anywhere from 6 to 15 years without a BMT.
As you can imagine, I was terrified. I was only 49 years old. I had a wife and 4 kids. The boys were grown and out of the house, but my daughter was only 9 years old. I could not bear the thought of her growing up without me, to not see my kids marry and have children of their own. Although the realization never left me that my time was now limited by something lurking within me, I was lucky. I didn’t require treatment for a number of years. When my cell count finally started to climb, the first rounds of chemotherapy put me in remission for 5 years, the second round for less than 2 years, but then subsequent rounds of chemo failed to achieve remission at all. At this point 50% of my bone marrow cells were cancer cells and the CLL had become resistant to standard therapy – it was now the Spring of 2010.
It’s at this point that my oncologist, Dr. David Porter, at the University of Pennsylvania, sat me down and told me it was time to consider a BMT – something I had been trying to avoid for years. But again I was lucky; a short time after the BMT discussion, Dr. Porter told me I was a good candidate for a new clinical trial that would use my own white cells to kill the cancer cells.
I read through the detailed clinical trial protocol and it seemed like it could work, but I must admit it was a bit strange to read the literature and descriptions of how this process had worked in mice and to realize that the next set of experiments were going to be in humans –specifically me!
I was definitely in – with no reservations – probably for a couple of reasons; I trusted Dr. Porter and the Penn team to keep me safe – they’d been doing it for years, but most importantly I saw it as a chance to finally fight back, to not just be a victim of my cancer – and so I became Patient Number 2 in the first CAR-T 19 clinical trial.
The procedure began by collecting my white cells by leukapheresis. This was a relatively painless process. The most difficult part of the procedure was sitting still in a chair for almost 3 hours without being able to get up. I was warned ahead of time to not drink a lot of coffee before the procedure or I would not like the consequences – some vague reference to catheters- I took their advice.
I remember the day the treatment started like it was yesterday – I was almost giddy with excitement. I was sitting in an infusion chair hooked up to an IV. The nurse connected the bag containing my transduced T- cells to my IV and started the infusion – it took less than 5 minutes – nothing happened. I was monitored for a couple of hours then sent home with my wife. We repeated this for the next 2 days and still nothing happened. It was rather anticlimactic.
All that changed pretty quickly. Almost exactly 2 weeks after my first infusion, I woke up with chills and a fever – just like the flu only a bit worse. I had experienced similar symptoms after initial rounds of chemo and started to hope it was working – that the war was on, that CLL cells were dying. The symptoms persisted for over a week; sometimes they were better sometimes much worse.
At one point I was hospitalized because my kidneys were starting to get into trouble, but that resolved pretty quickly and I was feeling much better the next morning. It was either the first or second morning in the hospital, Dr. Porter walked into my room beaming. He looked at his phone and announced: “hot off the press, 18% of your white cells are CAR-T 19 cells – my transduced cells were reproducing and killing cancer cells. It was literally at that moment I was pretty sure this thing was indeed working and that I was going to be ok.
I was discharged from the hospital that Friday, my wife picked me up and we drove straight to the Annapolis boat show – we bought a sail boat. Just imagine, it had been less than 4 weeks since the first infusion of my new white cells and I was thinking of the future – that indeed I had one – something that I had not done for a long time.
The next week I was again sitting in an exam room at Penn. Dr. Porter was sitting facing me. He said, “Doug, we can’t find a single cancer cell in your body, your bone marrow is completely free of CLL”. We just sat there for a moment looking at each other; we both had tears in our eyes. It was then, even though there were no guarantees, I decided to declare victory – I had won and could move on with my life.
It has been over 7 years since that day. I have 3 wonderful daughters-in-law, 3 terrific grandkids and my 9 year old daughter is now 30 and committed to helping those less fortunate than she. I am very healthy and just completed my 6th half marathon with two of my kids and one of my daughters-in-law. Actually, I tried to claim that added up to 3 full marathons, but my kids told me that was cheating.
After I ran my first half marathon with my son, Jon, I sent a picture of my son and me celebrating at the finish line to Dr. Porter, Dr. June and the rest of the Penn team that saved my life. I enclosed a note that reads:
Dear Penn Team:
My New Year’s wish for all of you is that, every single day, you take a moment to think about and take pride in what you are involved in and what you have accomplished. I am just one life but I touch others. I am convinced that you have found the key that will save thousands who touch millions.
Warm regards, Doug
Ever since I wrote those words I can’t escape the thought that every single life saved means the world will be a just a little bit different, that the beauty and fabric of life will be forever changed for the better.
It has been over 7 years since that initial safety trial began and I remain cancer free as is Patient Number One in that clinical trial. Since then, hundreds of cancer patients have been treated in various clinical trials with stunning results. Last August and October, the FDA approved Kymriah and Yescarta for pediatric ALL and Large B-Cell Lymphoma respectively and on May 1st, the FDA approved Kymriah for the treatment of Large B-Cell Lymphoma – just about exactly 7 years from the first infusion of CART-T cells into the first patient – truly amazing. While the initial Indications for Use approved by the FDA do not include CLL, there have been significant advances in improving the remission rate for CLL patients treated with CAR-T therapy in clinical trials and Novartis has stated they are starting Phase II clinical trials for CLL to move the Indications for Use along the FDA approval route. Also, research on CAR therapy for other cancers is showing real promise with over 400 clinical trials based on CAR technology in the U.S. alone. Indeed, what was once hope is now becoming a reality.
That’s really what has changed isn’t it – hope. Given the rapid rate of discovery, cancer patients now have hope that if there isn’t a cure for their cancer today, there may be one just around the corner – the very next clinical trial. Hope is everything to a patient with cancer.
This story does not have an ending – the ending is still being written – written by those who do the research – those in industry who are working to make the research breakthroughs available to all patients, those who care for patients every day, and the wonderful people who volunteer their time, energy and passion to raising money to support cancer research, support cancer patients and lobby for legislation to give all cancer patients access to the new treatments that are saving lives. It’s all of these people and more who are helping to write the ending of this story – the end of people dying from cancer.
Doug Olson received his bachelor’s degree in Chemistry from Maryville College and his Ph.D. in Medicinal Chemistry from Purdue University. Most of Doug’s career has been spent in the Medical Device and In Vitro Diagnostics industry. Doug served as President of DPC’s Instrument Systems Division and corporate Chief Scientific Officer prior to its sale to Siemens Health Care. Doug is the holder of eight U.S. patents and author of a number of publications. Doug is a cancer survivor and patient number two in the initial CART 19 clinical trial. He is a former member of the Board of Directors of the Eastern PA chapter of LLS and is on the Board of Directors of BÜHLMANN Laboratories and BUHLMANN Diagnostics Corp and currently serves as Chief Executive Officer of BUHLMANN Diagnostics Corp.
Originally published in The CLL Tribune Q2 2018.