by Allan and Deb Osborne
Shortly after I had recovered from my stem cell transplant my oncologist talked to me about a clinical trial investigating the benefits of post-transplant maintenance therapy with Revlimid. The theory was that since either a transplant or continuous treatment with Revlimid showed benefits in terms of progression-free survival, wouldn’t a combination be even better? It made sense to me and I was interested.
Unfortunately, the clinical trials were closed. However, a few months later they were ended early because the results had been so positive. So, at that time, based on the results of the clinical trials, we decided that maintenance therapy was the way to go for me. The regimen consisted of 10 mg of Revlimid daily, 21 days on, followed by seven days off.
I was very fortunate that the Revlimid did the trick and kept my multiple myeloma in remission. Although I did tolerate it fairly well, I did have a few side effects that affected my overall quality of life, such as fatigue (particularly during the third week of the cycle), gastrointestinal problems, lowered white blood and platelet counts, and some neuropathy. The side effects, although troublesome, were nothing I couldn’t live with and I felt that they were a small price to pay for being alive.
After I was on the maintenance therapy for a couple of years my oncologist spoke to me about research that had shown there was a slight risk of developing secondary cancers from Revlimid, particularly for those of us who had been given Melphalan prior to transplant. Even so, the risk appeared to be small and needed to be considered in light of the fact that without the maintenance therapy, a relapse of the myeloma was more likely. We decided the benefits of maintenance therapy outweighed the risk and I stayed on it.
After being on maintenance therapy for five years, I asked my oncologist what he thought about reducing the dosage to 5 mg. After much thought, he said he agreed, and even added that he would be comfortable with me coming off it totally. My numbers were all fine: protein and IGG counts were normal, light chains were well within the average range, and there was no detectable M-spike. I wasn’t yet ready to take the plunge and go completely off Revlimid, so we decided to continue, but with the lower dose.
After a year on the lower dose, my test results had not changed. There was still no sign of myeloma. I had seen a slight – but for the most part insignificant – reduction in the side effects. I again had the discussion with my oncologist about coming off Revlimid completely. Now the benefit vs. risk equation had changed. At the time, there was no conclusive data about the long-term side effects of Revlimid maintenance for the simple reason that very few patients had been on it long-term. On the other hand, my chance of a relapse, while ever-present, seemed low.
Since Revlimid maintenance was still in its infancy, there were many unanswered questions. Is there any survival benefit to staying on Revlimid for many years? Does the chance of developing a secondary cancer increase the longer you are on Revlimid? Will going off Revlimid increase the chance of a relapse? Are there other long-term side effects we don’t even know about? Researchers are working on answers to these and many other questions. Based on the data they had available, the prevalent thinking among the experts was that most myeloma patients should stay on maintenance therapy until progression.
With the information available, I had to decide if I was ready to come off Revlimid and fly solo? I decided that I was, particularly since the side effects I experienced did have an impact on my quality of life. I was willing to take the risk and was confident that it was the right thing to do for me. I was also reassured by the fact that my medical team would keep a very close eye on me.
At this writing, I have been off Revlimid for four years. My test results have been stable and continue to show no evidence of myeloma, but I know that if they start to head in the wrong direction, my decision can be reversed. On the positive side, I have seen an overall improvement in my quality of life.
Although I am confident that I made the right decision for me, there is no guarantee that I won’t relapse in the future. I am well-aware of this but was willing to take that risk. There is also no guarantee that I wouldn’t relapse if I had stayed on the maintenance therapy.
This clearly is not right for everyone since current research shows that there is a survival benefit with long-term Revlimid therapy. As my oncologist explained to me, 98 percent of myeloma patients should continue with maintenance therapy. But he feels that I fall into the 2 percent who will do fine without it. As Deb says, “It’s always an adventure.”
Life is good.
The Tough Question
Several years ago, Allan and I were fortunate enough to be part of a specialized training program to become mentors in a program called One-to-One at the Dana-Farber Cancer Institute in Boston. In that capacity we are matched with newly-diagnosed multiple myeloma patients and caregivers. Our role is to help them navigate through the complex issues surrounding diagnosis and treatment. The goal of the program is to provide support, understanding, and – most importantly – hope.
In speaking with other caregivers of newly-diagnosed myeloma patients, I am faced with a myriad of questions regarding patient care and expectations. Usually the questions can be easily answered. They range from dealing with healthcare insurance to dietary restrictions after a stem cell transplant.
But there is one question that I continue to struggle with, and I am unable to provide a suitable answer. I almost dread the inevitable fact that it will come up in conversation. The question simply is, “When will the worry go away?” I distinctly remember the first time I was asked the question. The sadness in the eyes of the woman who asked it, not only brought tears to my eyes, but made me realize that I never actually thought about it. The “worry” had simply become part of the journey – much like the diagnosis itself. It went to bed with me at night and awoke with me each morning. As I pondered the woman’s question, I really didn’t know how to answer.
I knew that I wanted to say something that would provide comfort and reassurance, but I also wanted to make sure that my answer was truthful. I spent a great deal of time reflecting on how to answer such a critical question.
While I would never presume to speak for all caregivers, I can say that for me, with time the worry no longer plays a major role in our lives, but remains, nonetheless. I think that it sits deep in the recesses of every patient and caregiver’s mind. Most often it goes unspoken.
So, I am challenged with answering the ultimate question, “When does the worry go away?”
I really don’t know. I wish I had a better answer. I can say – as we all know so well – that life presents many challenges and many worries, but somehow, we manage. We continue to move forward taking one day at a time. I have learned to focus on the fact that each day is precious. No day slips by unnoticed. They are all gifts.
At the beginning of Allan’s diagnosis, I adopted three simple yet very powerful words – “Don’t Stop Believing.” Those are the words that I live by, those are the words that guide me, knowing that each day we are closer to a cure. Those are the words that I share with all those who ask, “When does the worry go away?”
Don’t Stop Believing