by Jeffrey Iredell
When confronted with a cancer diagnosis we all have similar, yet different reactions. To be sure, we all experience that initial shock, but it's how you move on from that initial shock that takes us all in different directions.
Some spiral into depression that lasts through treatment, some attack the disease with vigor, others run the gamut. I responded in typical Iredell fashion. That is, an ill-timed joke followed by an abundance of information gathering, option discussion, and clear and focused choice with conviction.
Throughout the treatment planning I asked many questions, but one I never asked was, "What's my chance of survival?". The intern on my second opinion lead off my examination with a long-winded and frankly boring explanation of some 5-year survival prognostication index that was developed in the early 1970's by a leading oncologist of the time.
He adjusted his chart figuring for the variables: age, stage, general health, etc and spat out a percentage. To this day I don't remember the exact number (58% rings a bell), but I didn't care, I was refusing to be a statistic.
Why? Because that chart can't measure one's heart or strength of spirit. It was also 30 years old at the time of my diagnosis. Hell, one of the key chemo drugs in my treatment-Rituxan, wouldn't even be FDA approved until 16 years after that index was created.
Which brings me to the main point of my entry. When I discuss Lymphoma (or cancer in general) with someone newly diagnosed, I advise them to not get too caught up in percentages regarding survival ratings for several reasons, the first of which I described last paragraph.
Secondly, development of new and better treatments move at meticulous pace. Not slow, meticulous. It has to. Sure, I want a cure as bad as anyone, but it takes years to develop a new treatment, a couple more to test it in not one, not two, but three clinical trial phases. Then they need to collect, analyze, and validate any findings and results, all this after you wait to see how the clinical trial patients continue after treatment. THEN they can apply for FDA approval and wait for subsequent approval. Besides, I want them to get it right, don't you?
Even then, the drug companies apply for a patent, which can make the cost potentially prohibitive or in short supply. I understand why, of course. They spend millions to develop the drug, they do deserve to reap the benefits.......to an extent. I do think there could be a shorter time allowance on the patent, but I could be wrong on the numbers.
Using my Rituxan example above, it was FDA approved in 1997, granted a patent in 1998 which runs through 2015. Only then can another drug maker start to supply the drug. I would be curious as to the chemo bill for my R-CHOP regimen once that patent expires vs. what my insurance company was billed.
What really prompted this was a snippet in my copy of the LRF Research Report I just received. Only this year, in April, were the results of a 7-year study from 2002 to 2009 published in the Journal of Clinical Oncology. (links for both at the bottom of the page)
As stated in the newsletter, " A study published in the April, 2014 issue of the Journal of Clinical Oncology establishes 24 months as a valid end point for diffuse large B-cell lymphoma (DLBC) treated with immunochemotherapy. The study, which includes contributions from 3 members of the LRF Scientific Advisory Board, tracked 767 patients with newly diagnosed DLBC who were treated with immunochemotherapy regimens such as R-CHOP and enrolled in one of two clinical trials from 2002 to 2009. Researchers found that patients who achieved event free status 24 months from their diagnosis had an overall survival rate equivalent to that of the general population, with a risk of relapse at only 8%."
So whereas I was told before that I only had a app. a 42% of achieving remission or staying in it for 5 years, this study shows a marked improvement in those chances. As I am now over 3 years post-diagnosis and have been event-free, It gives some freedom of mind to truly move forward.
What this also shows is that drugs released over 15 years ago, only now have enough vetted data to update survival statistics. The results have been there all along, just not quantified. As we know, doctors don't pass on false hope. If the data isn't there to support it, they won't provide it.
If you should ever find yourself in the position of facing a diagnosis, don't buy into the statistics given, as I have shown, the better drugs are already in use, they just don't have the quantified results to show for it yet. More treatments are already coming to the forefront.
Refuse to be a statistic.
Lymphoma Research Foundation Research Report
http://www.lymphoma.org/atf/cf/%7Baaf3b4e5-2c43-404c-afe5-fd903c87b254%7D/FALL14_RESEARCH_REPORT.PDF
Journal of Clinical Oncology
http://jco.ascopubs.org/content/24/19/3121.short
Why? Because that chart can't measure one's heart or strength of spirit. It was also 30 years old at the time of my diagnosis. Hell, one of the key chemo drugs in my treatment-Rituxan, wouldn't even be FDA approved until 16 years after that index was created.
Which brings me to the main point of my entry. When I discuss Lymphoma (or cancer in general) with someone newly diagnosed, I advise them to not get too caught up in percentages regarding survival ratings for several reasons, the first of which I described last paragraph.
Secondly, development of new and better treatments move at meticulous pace. Not slow, meticulous. It has to. Sure, I want a cure as bad as anyone, but it takes years to develop a new treatment, a couple more to test it in not one, not two, but three clinical trial phases. Then they need to collect, analyze, and validate any findings and results, all this after you wait to see how the clinical trial patients continue after treatment. THEN they can apply for FDA approval and wait for subsequent approval. Besides, I want them to get it right, don't you?
Even then, the drug companies apply for a patent, which can make the cost potentially prohibitive or in short supply. I understand why, of course. They spend millions to develop the drug, they do deserve to reap the benefits.......to an extent. I do think there could be a shorter time allowance on the patent, but I could be wrong on the numbers.
Using my Rituxan example above, it was FDA approved in 1997, granted a patent in 1998 which runs through 2015. Only then can another drug maker start to supply the drug. I would be curious as to the chemo bill for my R-CHOP regimen once that patent expires vs. what my insurance company was billed.
What really prompted this was a snippet in my copy of the LRF Research Report I just received. Only this year, in April, were the results of a 7-year study from 2002 to 2009 published in the Journal of Clinical Oncology. (links for both at the bottom of the page)
As stated in the newsletter, " A study published in the April, 2014 issue of the Journal of Clinical Oncology establishes 24 months as a valid end point for diffuse large B-cell lymphoma (DLBC) treated with immunochemotherapy. The study, which includes contributions from 3 members of the LRF Scientific Advisory Board, tracked 767 patients with newly diagnosed DLBC who were treated with immunochemotherapy regimens such as R-CHOP and enrolled in one of two clinical trials from 2002 to 2009. Researchers found that patients who achieved event free status 24 months from their diagnosis had an overall survival rate equivalent to that of the general population, with a risk of relapse at only 8%."
So whereas I was told before that I only had a app. a 42% of achieving remission or staying in it for 5 years, this study shows a marked improvement in those chances. As I am now over 3 years post-diagnosis and have been event-free, It gives some freedom of mind to truly move forward.
What this also shows is that drugs released over 15 years ago, only now have enough vetted data to update survival statistics. The results have been there all along, just not quantified. As we know, doctors don't pass on false hope. If the data isn't there to support it, they won't provide it.
If you should ever find yourself in the position of facing a diagnosis, don't buy into the statistics given, as I have shown, the better drugs are already in use, they just don't have the quantified results to show for it yet. More treatments are already coming to the forefront.
Refuse to be a statistic.
Lymphoma Research Foundation Research Report
http://www.lymphoma.org/atf/cf/%7Baaf3b4e5-2c43-404c-afe5-fd903c87b254%7D/FALL14_RESEARCH_REPORT.PDF
Journal of Clinical Oncology
http://jco.ascopubs.org/content/24/19/3121.short
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