In the autumn of 2003, I saw a picture of myself at a party and noticed a swelling on my neck. I saw my GP and he thought it might have something to do with blocked saliva ducts so he made an appointment for me with an ear nose and throat surgeon. After some tests, he decided to do a biopsy and it all started from there. He really never discussed exactly the form the biopsy would take so imagine my surprise on awakening to find my throat had been slit from side-to-side to enable him to get in and obtain a sample sufficient for his needs.
The results came back as SLL/CLL and then, it was on to see a hematologist. I waited an agonizing three months to see the hematologist. You can just imagine the stress caused during that period. So finally the day before my appointment, for which I was obviously anxious to have, the phone rang! “Sorry Derek, but your Doctor is not well and we will get back to you with an alternate appointment date.” I asked when and was told “We have to reschedule and we will let you know once that is done.” I was stunned and could not believe the wait would go on. So my first act of personal advocacy was to get back on the phone, refusing to take the seemingly never ending wait any more. As a result, I was in the hospital two days later for my initial consultation.
Stage IV, both RAI and Ann Arbor was the opinion. Oral Fludarabine was the treatment. There was ZERO mention of any suggested remission time. Following treatment, I relaxed and got on with my life. Two important issues arose during the time of my initial treatment. First, I requested a FISH analysis. The reply was that I could get this, but it would in no way impact on the clinical management of my disease. I also asked about Fludarabine combinations and was told this was not a standard of care at the hospital.
Some 11 months after finishing my first-line treatments, in a letter to my GP, I saw the comment that I had relapsed (I have always got copies of all medical reports). This fact had never ever been discussed with me. Upon discussing this with my hematologist at my next visit, I was told that “anyone with half a brain would realize that if he was told lumps could be felt he would know he had relapsed” That was my last visit with that particular hematologist and, with the help of my GP, I changed specialists.
At the same time, I was determined to get the best advice and care and made an appointment with the Mayo Clinic in Minnesota, specifically to have another opinion and also for the prognostic testing I so desired. Results of those tests showed me to be 11Q, unmutated and the high CD38 ZAP 70 testing was negative.
I then returned to Canada and met with my new hematologist. He had already indicated to me that he would proceed with chlorambucil and prednisone for second-line treatment when the time was right. My neck was growing nicely, so I guessed that would not be that far away.
The recommendation I had received from Tait Shanafelt, MD from the Mayo Clinic was FCR (fludarabine-cyclophosphamide-rituximab). This was not available in Nova Scotia, even in a clinical trial. I had shared with Dr. Shanafelt what was recommended for my next treatment in Canada (chlorambucil/prednisone). He warned me that not only would my remission be equally as short, but more importantly what I really needed was FCR and that it would be very difficult to tolerate this as a third-line treatment.
By an absolute stroke of luck, Dr. Susan O’Brian then from M D Anderson was in town lecturing. She was shown my profile and agreed 100% with Dr. Shanafelt.
The result was my hematologist from Canada advocating on my behalf. I received FCR some two years before it was approved for first-line treatment here in Nova Scotia, and even longer for eventual second-line approval. I was the first patient in Nova Scotia to receive FCR. I must add that after completing FCR, I completely understood Dr. Shanafelt’s comments about it being extremely challenging to tolerate it third-line. My absolute neutrophil count (ANC) took about 6 months to start the climb back above the 400 mark. But it eventually did and, during that time, I suffered no issues with my health. I might add that I did not smoke, was only a very occasional drinker, ate healthy and had been swimming 1500 meters every morning for many years prior to my treatments.
The result has been an ongoing remission now of some 9 ½ years.
A few pertinent stories:
As the stress of the diagnosis wore on, I eventually went to my GP and asked for some happy pills to rest my weary brain box. He preferred to send me to a psychologist whom he had great faith in. At the end of my first visit, just prior to my departure, I was asked if I had signed the papers presented on my arrival. I played dumb, knowing full well what he was referring to. He reiterated that they were his terms of service and he reminded me to leave my credit card details, since if I did not give 48 hours’ notice of cancellation they would automatically take the fee. He reminded me his practice was a business and they were his terms, politely of course. I walked out the door, looked up at the sky, and thought that he probably needed me more than I needed him.
So I then did the manly thing and leased a brand new Jaguar motor vehicle. I had always wanted one and thought, why the hell not.
I also found music at the grand old age of 63. That has been the most powerful drug I could ever take to relieve my stressed brain box. I took up playing the harmonica, never before having been in any way inclined musically. I formed a band with some top shelf musicians and, over the next 7 years, recorded three live CDs. I gave 100% of the net proceeds to a fund I created to help hematology patients at our local hospital who had financial challenges while having treatment. Little Derek and the Haemo Blues Band was born!!
I well remember, at the very first live recording, saying to those assembled that this journey for me was Not a sentence of death BUT a sentence of Life. That still remains my credo and sustains me every minute of every day!!
I have also written three songs about the journey we all face; The words are mine, but they were put to music by my friends.
So in closing four important points for our journey:
- Never forget that the best advocate in the world is YOU!! No one can do it better.
- Find that something that will allow you to cope with the sword of Damocles we all keep glancing up at!
- Enjoy every minute of every day, both the tough ones and the good ones
- Remember that our loved ones are just as stressed as we are and work hard to hide that from us.
Derek Caine AKA Little Derek is a CLL (chronic lymphocytic leukemia) patient since 2004, a powerful advocate and fundraiser living in Nova Scotia, Canada.
Originally published in The CLL Tribune Q1 2017.