I was diagnosed in November 1999 with a rare leukemia called Hairy Cell Leukemia (HCL). It is a rare, slow-growing cancer of the blood where your bone marrow produces abnormal B cells (white blood cells called lymphocytes) and they look hairy under the microscope hence the name.
I got the diagnosis after a routine blood test (CBC) during an annual physical exam and I was sent to a specialist who told me I had leukemia. I was absolutely in shock when I was told. I had no symptoms and felt fine.
I never imagined how many times I would cross paths with this disease. I was told by my very nice local oncologist not to worry about this HCL and that together we would cure it and that it was very treatable.
I found out later that this type of leukemia is actually incurable but very manageable. It's actually a sub-type of CLL (Chronic Lymphocytic Leukemia).
Also, most people get complete remission and the leukemia often doesn’t return for at least 10-15 years. At least, Hairy Cell Leukemia certainly sounded better than other leukemias and cancers I had heard about.
Hairy Cell Leukemia Treatment
So in December 1999, I was given the “gold standard” for Hairy Cell Leukemia treatment. Back then the treatment was seven consecutive days of 2-CdA (Cladribin). I had no real side effects from the chemo and didn’t miss any work.
But my Hairy Cell Leukemia came back again and again. I averaged only 2-3 years between occurrences. Side effects started to become more numerous and troublesome.
I switched to a nationally recognized oncologist/researcher at a leading hospital who is considered one of the top experts with this type of leukemia. He told me that I had one of the worst remission histories that he’d ever seen or heard of.
Clinical Trial Experience
In late 2013, I was encouraged by my oncologist to join a Phase II clinical trial for Vemurafenib, a targeted therapy drug, for cancer patients with a BRAF mutation. HCL patients typically have this mutation and I did too.
But after 3 months of taking this drug in early 2014, for my 6th occurrence of Hairy Cell Leukemia, I only received a partial response.
I endured over 30 side effects including a lot of skin cancer (basal and squamous) and abscesses in different parts of my body which all required minor surgeries.
In my opinion, clinical trials are oversold and make sense only if you really have no other treatment options. I realized later that wasn't my situation.
Finding Dr. Nagourney
I found Dr. Nagourney and Rational Therapeutics (now Nagourney Cancer Institute) while searching the Internet in the late summer of 2014 when I was looking up treatments for Stage 4 pancreatic cancer for one of my family members.
I found his book on Amazon, Outliving Cancer, and read it cover to cover.
His idea of testing your own cancer cells in the lab and coming up with a drug that would be most effective and less toxic for my stubborn cancer seemed amazing and sensible.
I finally realized that no matter who my oncologist was in the past, they were all just guessing what might work for me.
I was tired of all these guesses.
Meeting with Dr. Nagourney was different than other oncologists I had worked with. He took his time and spent over one hour with me.
I learned more about possible treatment options for my cancer than I had ever heard of working with other oncologists over the years. I became more optimistic!
Well, I didn’t have to wait long for my leukemia to come rushing back.
My Functional Profiling Test
In November 2015, I found my chance to have Dr. Nagourney test my leukemia cells. I underwent my 9th lifetime bone marrow biopsy and had a sample sent to Dr. Nagourney.
Dr. Nagourney’s staff performed their EVA-PCD assay (functional profiling test) on the leukemia cells found in my bone marrow aspirate. My marrow was 95% leukemic but the assay came back with some informative results.
Based on the assay results, I was put on a 2-drug combo: my old friend and “gold standard” for HCL patients 2-CdA, and the drug Rituxan.
Chemotherapy & Targeted Therapy Combo
I had easily tolerated 2-CdA several times in the past but the drug never gave me much of a remission. Rituxan gave me a very adverse reaction back in 2006 of lowering my blood pressure down to 66 over 33 which sent me to the hospital in an ambulance.
Now in December 2015, my blood counts were pretty bad again.
The main symptom for Hairy Cell Leukemia is ending up with low blood counts across the board (pancytopenia).
I took the 2-CdA easily and my blood counts recovered somewhat.
By slowing down the IV drip rate I got the 1st of 8 scheduled weekly doses of Rituxan (500 cc) into my system. However, we had to hold off on the 2nd dose for awhile because I ended up in the hospital with a series of bad infections.
When we did go back to the 2nd dose of Rituxan, we tried and tried and my body just couldn’t tolerate it anymore.
I encountered many, many side effects. This disappointed me since the protocol for Rituxan is eight doses – once a week. And I couldn’t even tolerate two doses!
We then planned to start treatment with a 3rd drug so a bone marrow biopsy was done to see how many leukemia cells were still left in my marrow.
To everyone’s amazement, the pathology report said that I had only 0.02% Hairy cells left in my marrow!
Best Results in 16 Years
I had achieved my first Complete Response out of seven tries and in 16 years!
And this with 2-CdA which had not really worked in the past plus only one dose of Rituxan.
This confirmed my belief that if I could just get my cancer tested I could get the right Hairy Cell Leukemia treatment for me.
I had a lot of people praying for me and I credit God, Dr. Nagourney, his partner and staff in helping me get rid of this darn disease, at least for now.
It took a long time to have it really sink in that my leukemia is essentially gone and I have a chance at my first long remission!
Since then, I have been telling whoever would listen that everyone should have their cancer cells tested BEFORE getting any drug treatment and now I can say I’ve "put my marrow where my mouth is!"
Thank God I discovered Dr. Nagourney and I look forward to NOT worrying about any leukemia coming back for a long time!
Glenn has been cancer free for 25 years now and is still alive today.