Very interesting. Thank you for sharing.
Andrea

Thank you Julie for sharing,

Blessings to you also,

lily

Julie:

What a GREAT contribution to this forum. I hope everyone will read it. I taught statistics at the college lever at Rutgers and Auburn, so I believe they can be extremely useful for research purposes. However, none of us is "average."

One thing that the statistics leave out is God (if we can call God a thing, but you know what I mean -- the subject, not the Person of God). Most of us here believe that prayer changes things, and we do not have to believe in current day miracles (I have never seen or experienced a provably supernatural even, so I do not) in order to believe in the Providence of God (His working through the doctors and other natural ways). I would do injustice to the hundreds of people who prayed for me and the thousands of prayers that we offered to attribute my survival merely to science.

While I am at it, let me say that this is the major fallacy of evolutionary thought as well. While some of it is quite useful, much of it goes way too far because, at the outset, there is an assumption that God has (and had) absolutely no part in the process. That assumption assures that at least some of the conclusions will be false. We can depend on what is observed to be the case. But when it is extrapolated over billions of years and taught to our children as fact, something is terribly wrong.

Shoving God off of our road maps leads us to a very perilous pathways -- dave

Thanks Dave,

I am glad you appreciated the article. Although the source was an evolutionist, the message is still powerful. Like you, I ascribe all positive in the world to the creator of this world-God! I have witnessed so many miracles and so much prayer from people all over this world, I often become overwhelmed by the love vectored on me and my family. God is so faithful and to echo comments from Lily, this struggle has formed and molded me in many positive ways. I would never ask for AML; however, the spiritual growth that has occurred within me and my family are glorious!

Julie

An interesting article. My takeaway is that you can't take statistics at face value - they can be made to say anything you want. As a CPA I am obviously a numbers guy and I already knew that but could never explain it as eloquently as the author.

But from a clinical standpoint we need to remember that our treatment plans are largely driven by statistical data. Sure, they're modified along the way based on each of our individual peculiarities but the initial plan is based on the most statistically successful treatment outcomes.

So as Dave said, the stats are very useful for research purposes and that research makes its way to our doctors offices and hospitals. But we must be careful not to rely on statistics solely as an indication of whether our treatment will be successful or not.

For example, the 5 year survival rate for white men with AML is something like 18%. If I went by that I wouldn't be buying green bananas. When you drill down into the stats you'll find that once you get to where I am in the treatment I have a substantially better shot at seeing 5 years.

I'm not a pollyanna and I realize that people die from this disease. But by examining the statistics closely and scrubbing them down to fit my circumstances it actually gave me hope that I could survive this and lead a somewhat normal life.

So stats can be helpful in many aspects but you need to put in the time and effort to see through the jungle of numbers to get to the truth.

Lou

Just a brief personal comment. This is the first time I have seen that 18%, and while I was undergoing treatment I was totally ignorant of any stats at all. I never even went into any of this until I was essentially declared a survivor (at the recovery from my last chemo). Perhaps that was because from the outset they did not give me much hope, so I figured anything I got was borrowed time. Also, I figured I had the best med team I was going to get, and I was just going to do what they told me and let God worry about the outcome. Well, so much from me -- but I would expect not having the stress sure did not hurt anything -- dave

Thank you Julie, this makes sense to me. I have always said that the statistics don't apply to me as I'm much younger than the average patient age, I tolerate chemo quite well, I am positive during treatment, I seek information and help to keep me as well in body, mind and spirit and I'm quite determined. During my first diagnosis and induction my husband was reading the statistics of relapse but I refused to even look at it, one step at a time was my motto. Since then there have been relapses and other hurdles and worries but I am here still having a quality of life and I'm happy with the Drs I deal with. I think it all helps.

Nicole

And there are people who survive longer than 5 years. My doctor has told me of a couple patients of hers who are still here almost ten years later.

I am 56. I intend to be here long after 61.

I do not want to get too technical, but if you will notice, the survival curves are what is called exponential. They have a fairly large drop early on and then between 2-3 years they almost level out. What this means is if you have made it two or three years after your last chemo or your transplant, then your probability of making it to five is dramatically increased. That slight drop between 3 and 5 years are the very few who make it to three but do not make it to five, and it is not that much of a differential. This is why we say, time is on our side. Non-survivors lose a day of life for every day that they live. Survivors can expect two days of life for every day that they live. Well, perhaps it is not as simple as they, but hopefully you get the picture. Chance are if you are not going to make it your demise will be early on.

Generally, for economic reasons, they do not keep track after five years. But I would be willing to wager (if I did that type of thing) that if you survive five years, you are going to die of something other than AML. -- dave

Wow, thanks Dave - that is super interesting. I had not realized that...I too have avoided getting a "prognosis" during my treatment and currently have no idea how I'll do in the long run (I'm 33, chromosomes 9 and 11 -AML). I just finished my second round of chemo (consolidation) and my BMT is coming up at the end of July, and I just can't face any more information or stress currently. The stats do scare me, but what you wrote is super helpful, as is the article and the other comments. I find that so much of this seems like a role of the dice - you just don't know what is going to happen and that's okay. It's not a bad way to live.

Hi Julie,

As you get to know Dave, you will realize that he is always right. Statistics are merely a function of faceless numbers. They say nothing about the individual. I know many who have beat their AML and have been healthy for well over 10 years (more like 15+ years of uninterupted health). Your attitude about not wanting to face any more stress is spot on. Let things unfold as they will and don't read statistics or listen to negative stories. Just think of getting well. I was very lucky to have met someone (through a hospital referral) who went through everything that I did about 15 years earlier and is totally healthy and enjoying life. Like you, he too was young and frightened. Every time I felt anxious about my future, I just thought of him. So you can think about the members of Team Transplant 2013 who are doing well. My transplant will have its 2nd anniversary (Yes, I think like a two year old now) in September. All I think about is how fortunate I am to have done so well and how much I want to tell the wonderful person from Germany who saved my life with his marrow how much I appreciate him (I will learn his name at my second anniversary).

Cliff,

I already agree Dave is always right. I have been communicating with him pretty much since diagnosis-he is such an encouragement and so are you! I would love to meet someone 10 to 15 years out from treatment-how amazing.

BTW, a gal named Joy who received a BMT from a donor in Germany traveled to meet his entire family. She is in her 30s and had five young children under eight years old. I believe there are several European countries that make bone marrow donation mandatory. Joy is at least five years post transplant and doing well.

Julie

Julia, Julie and Cliff -- I appreciate your kind words and they will definitely keep me on my toes not to speculate. Let me remind everyone that unlike Cliff, I am not an MD ... my background is in engineering and more recently computers. It is GREAT to see Cliff back on again. Wishing everyone the greatest 4th ever!!!! -- dave

This is a wonderful contribution for this group, and maybe..... mostly for me ! As some of you know, relapsing is one of my biggest nightmares.... and you know why? Because, when diagnosed, I got into internet to read everything I found about AML, specially statistics about survival !

My doctor didnt want to give me statistics, either, but he had to, due to my stubborness..... and here I am, asking God every day to keep my body health.....but to heal my mind too.....

So.... thanks for this ! And.... yes, God is important. To me....the most important medicine..... for the body and for the soul

Thanks Dave. You have helped me so much with my family's current health concerns.

Julie,

When I met Dave (another Dave) who is alive and kicking 15 years post transplant, he was an inspiration and still is. I too got my bone marrow from a man in Germany as did a friend of our Phil. I have also met so many others who have gotten their marrows from that country. I wish that the U. S. was a bit more insistent on people donating, since it is a true gift to those of us who need their help. Germany is the number two country in the world for donors, second only to our country, which has a population probably 5 times as great.

BTW, the donor from Germany for Phil's friend also came to the U. S. expressly to meet him. That is a truly beautiful vision to keep in mind.

Cliff