By Mark Silverstein, SLL & CLL Patient
A speech given at the Lymphoma Canada National Conference, The Changing Landscape of Lymphoma: September 30, 2017
This morning I was supposed to be sitting in isolation, beginning the process of an allogenic stem cell transplant. I won’t lie; I’m still scheduled to go through it. However I chose to take some control in a situation which offers little control.
I made another choice.
Against the advice of some I chose to complete my current treatment regimen to put myself in the best possible position to have a successful transplant. I made an emotional choice to spend one more anniversary dinner with my favorite person on this planet- my wife. And I made a spiritual choice to take the time to enjoy one more week by the ocean.
Victor Frankl, a man who was a contemporary to Freud & Yung, created his own branch of Psychotherapy (Logo therapy) after suffering through most of WWII in four different concentration camps. He survived, and felt by doing so he had proved what he previously had theorized – (and I paraphrase) that the only thing that cannot be taken away from us is the freedom to choose ones attitude in any given set of circumstances, to choose one’s own way.
And that is what I would like to speak to you about this morning is our right to choice.
To offer a little background – it was seven years ago this December that I was diagnosed with stage 4 Small Lymphocytic Lymphoma, and for the first time in my life I found myself way ahead of the curve as the average age of diagnosis with my cancer is 72. I was at the ripe old age of 45; my beautiful wife was 41, and the kids 11 & 12.
For those of you not familiar with this disease it’s a bit unique as it’s referred to as both a Lymphoma and a Leukemia depending how it presents itself in the body. So at first I had Small Lymphocytic Lymphoma (or SLL) as it presented mostly in my lymph nodes and bone marrow, but after my first relapse it was also found in my peripheral blood and so was now considered Chronic Lymphocytic Leukemia (CLL.).
I originally received 6 cycles of chemotherapy, or what I often refer to as chemical warfare on my body, which put my cancer into remission. However the operative word of my cancer is that it is chronic, so three years later I relapsed and learned that I also had developed a chromosomal mutation that in most of the medical literature out there is followed by the phrase “poor prognosis”. The 17p deletion is a mutation that not only makes traditional chemotherapy ineffective; it also negatively affects the P53 gene that controls my body’s tumor suppression abilities.
At the beginning of this year I experienced my 3rd relapse and by far the scariest. It included a bunch of firsts – the first time I was in the hospital for an extended stay since my diagnosis, the first time we heard my hematologist say that he thought I was in trouble, and it was also first time my wife and I seriously started to say good bye to each other.
But we have been very fortunate as well; we have had timing on our side to this point. When I relapsed there has been a new targeted oral drug available. The first one, I started in August 2015, held me in remission for 14 months. And again this year, with a drug that had just been approved a couple of months prior for individuals with my mutation. So it became very concerning when just before the summer my counts began to go up and the topic of resistance entered the conversation. It was at this point we revisited a suggestion I originally made to my hematologist while I was in the hospital, that we add a secondary drug that recent trials had shown greatly improved the efficacy of the first drug. Thankfully I have a doctor who is willing to work in partnership, and as he had seen a recent presentation that backed this up, it was agreed we would move forward with this combination treatment. He advised us he would take care of the arrangements for the chemo chair, and we were responsible for arranging for the drug.
After battling with our insurance for coverage and being denied, as well as learning Trillium only helps with oral pills and not IV treatments, we began to realize something that seemed totally unreasonable to us – it was an approved cancer drug in Ontario, an IV drug too, and yet we had to pay for it.
While we have a good public healthcare system in Canada, and I am grateful to the medical professionals who have guided my treatment to date, I have learned that cancer care is not equal across Canada. It actually depends on which province you live in. Perhaps you don’t know this yet, but based on which cancer you have the provincial government bodies dictate – which treatments are approved for use, where that treatment falls in your disease course (1st, 2nd, 3rd line), what combinations if any can be used, and finally how those drugs get financially covered.
As I mentioned I have received new oral targeted therapies as part of my treatment. Taking a pill at home is much easier than going into a clinic for an IV infusion, but oral cancer drugs are not part of the Ontario healthcare plan if you are over age 25 or if you don’t qualify for the Ontario Drug Benefit plan, which I don’t. However, if I lived in any province west of Ontario, oral cancer drugs are paid by the provincial healthcare plans regardless of your age or economic status, just like IV drugs.
The additional stress of figuring out how to pay for my treatments was not something I anticipated when I was diagnosed. My wife thankfully has health insurance through work, but it did not cover all of the costs of my treatment. As an example – The first oral drug I received cost close to $10,000/month, which we were able to cover through a partial payment from my wife’s insurance, some coverage from the Trillium program, and a subsidy from the drug manufacturer. But all this took precious energy, created additional stress, and during the process only added to our suffering.
Now we are faced with an even tougher challenge – financing the secondary drug I have recently added to my treatment plan. I have had this drug in the past, and in Ontario people with the same diagnosis as me only get this drug once and typically their first line of treatment. So in order to get it again, I have to pay for it. In fact, I am actually using the disability payments I get from the government that is supposed to help me pay for day-today living expenses while I am sick, to pay for this drug that will cost me $15,000 for only four infusions.
We are spending our own money so I will survive and increase the odds I make it through my upcoming stem cell transplant. My cancer treatment choices should not depend on how much money I have to spend or my postal code. The choices should be based on the best treatment options currently available in Canada, and should be equally available in every province. In addition, I personally believe the treatment decisions – which approved drug is used in which line of treatment and in which combination should be left to our specialists to decide based on the most current data –that is why they are called specialists.
As I alluded to at the beginning, my stem cell transplant is still scheduled and will happen this November. I have chosen my own way through the last seven years- by educating myself on my disease, through developing what I feel is an excellent working partnership with my hematologist, by doing as best as I can to remove fear from my choices, and along with my wife I have remained intellectually, emotionally, and spiritually open to this journey with (of course) no assurances of how all this will turn out.
In fact we often discuss how it feels as though I’m on borrowed time, and with the transplant on the immediate horizon it feels even more that way. So once again, I will choose to take one more trip to spend some time by the ocean, and I will take the opportunity to celebrate our wedding anniversary and along with it our life together.
And because we made our own choices, the universe smiled on us and gave us a 10/10 match (instead of the 9/10 match I originally had) for my transplant!
To end I would like to leave you with a few lines from When Breath becomes Air by Paul Kalanithi, an autobiographical book that deeply resonated with our beliefs and experiences – (and I quote) “Although these last few years have been wrenching and difficult – sometimes almost impossible – they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude and love.”
I wish you all well. Thank you.
I was born & raised in Toronto Canada, and currently reside in the suburbs with my wife and two step-children. In December 2010, at the age of 45, I was diagnosed with Stage 4 SLL and proceeded with 6 rounds of FCR. I had a reoccurrence late 2014, and after several months of watch & wait, I began treatment with Ibrutinib August 2015. I relapsed a second time at the beginning of 2017, spending 3 weeks in the hospital to get my CLL under control with Venetoclax. My Hematologist and I later decided, based on new trials, to combine several infusions of Rituximab to get me ready for an Allogeneic Stem Cell Transplant this November.
After my initial diagnosis and recovering from chemo, I decided to go back to school for psychotherapy. I currently have both a private practice, as well as co-facilitating a survivor group at the local hospice. In addition, I facilitate my own wellness support group for people with an advanced (metastatic) cancer diagnosis.
If you have comments or would like to contact Mark directly, please email him at email@example.com
Originally published in The CLL Tribune Q4 2017.