We have all heard the saying, “What doesn't kill us, makes us stronger.” This is so true, on so many levels. When a person is diagnosed with cancer, there are so many variables that come into play amidst their fight to live, that when a person does succumb to their disease; it isn't always the disease that takes their life.
Complications often arise during and after treatment and may actually be the primary cause for death, but the fact of the matter is, if the person had not undergone that particular treatment, the final result would have ended in death, despite the treatment that gave them the chance, of life. Hence the saying; I survived my treatment, and now I will live.
When you have chronic myelogenous leukemia, you have a form of blood cancer that is chronic; meaning it is never cured and it never goes away. The upside to this type of cancer is that as of fourteen years ago, it became treatable; prior to that time, people rarely lived for five years, with this diagnosis.
Those of us diagnosed with CML today, have a much brighter future than those diagnosed with CML fifteen years ago. The “Ottawa Citizen” recently published an article stating that there is a possibility of heart damage to patients that have been on Gleevec, long term. This is not a surprise to me and I believe that there will be many more long term side effects that will become apparent, with the longevity of use, of these TKI’s.
From the very beginning of my treatment, I have questioned the “long term” side effects of the highly toxic drug that I must take, in order to live. I understand that this data is not available, simply because it does not exist; no one has taken these drugs “long term”; in the big scheme of things, they are “new” drugs.
I understand that I am a bit of a guinea pig, but given my circumstance I have no choice if I choose to fight the good fight, and live. I am grateful for these drugs despite their side effects, because if they did not exist, then neither would I.
I do however; feel that with the discovery of these long term side effects comes the responsibility to proactively combat them, in any way feasible. Hopefully the manufacturers of these drugs will come up with a newer, better and less damaging medication as these long term effects come to light, but in the mean time we should be certain to see that we are properly monitored, and more importantly that we are living a healthy life style.
Since there is speculation that Gleevec may cause heart damage, wouldn't it stand to reason that if we proactively worked at keeping our heart healthy, then we would be ahead of the game?
Here are a few suggestions that will lead to a healthier heart:
1. Manage your diet and weight.
2. Get plenty of exercise.
3. Do not smoke.
4. Manage your cholesterol levels.
5. Manage your blood pressure.
6. Learn to manage stress.
There are many ways that we can live a healthy lifestyle, and being that we must take these medications “long term” living healthy should be high on our priority list.
That being said, we must realize that ALL medications have side effects; some worse than others and some that may cause permanent damage and even death. But without the discovery and use of TKI’s, our certainty would be death.
Scientists are making great strides in this field; there are now studies being conducted where patients that have maintained PCRU are actually being taken off of all TKI’s. There may come a time when many of us will be able to be drug free again.
It is also my belief that because CML patients are now living, they are able to collect and study data that will someday lead to a cure. I am certain that they will also be working to alleviate as many long, and short term side effects from our medications, as possible.
In the meantime, it is my belief that we should live the healthiest lifestyle we possibly can, monitor and report our side effects to our oncologists, and continue to research and read everything that we possibly can, that is related to CML.
Here is to Living Well, with CML!!