Halfway is Almost There

Halfway is Almost There

A New Prognostic View for Diffused Large B-Cell Lymphoma Survivors

Several weeks ago my wife and I were running on our local bike trail and came across one of her friends. The friend asked how I was doing with my fight with cancer and I replied that my recent PET scan showed I have now been cancer free for two and a half years. She said, “That’s wonderful, you are halfway there”. For many cancers, like mine, if one survives cancer free for 5 years you are considered cured. Making it 5 years is a key milestone for most cancer patients. So measured in time I am halfway to being cured. However, by looking at it in a different way, by risk or probabilities, I am almost there.


When I was first diagnosed with aggressive cancer I was giving a probability of about 50% of making it 5 years and being cured. That scared the hell out of me. I would have preferred something like the 90% chance they give to Hodgkin’s lymphoma patients. Since my first diagnosis my oncologist doesn’t speak in terms of probability or numbers. He just says, “You are doing great”, or “it couldn’t be better”. Now, I don’t think I’m the only cancer patient that would like to hear quantitatively what my chances are of being cured, especially if those chances have improved over time. What if you had an accountant take care of your finances and during an annual review of your finances your accountant says, “You are doing great”. Would you be happy with that and no numbers? I don’t think most people would, they would want to know how much money they have in the bank.

I researched the internet for an answer. I looked at all the reputable cancer websites(1) and through many published medical papers on cancer survival studies, but they all show the same thing, survival probabilities for cancer patients who have been just diagnosed. Figure 1 below shows an example of such a plot. I obtained the data for this plot from a medical paper published on a study made in British Columbia.(2) The plot is the overall survival (in percent) of 365 patients with diffuse large B-cell lymphoma (DLBCL), the type of cancer I have. The way to read the plot is first pick a time on the horizontal axis, draw a vertical line until it reaches the curve, then at that intersection point draw a horizontal line to the vertical axis and read off the probability of surviving that period of time. For my disease, the probability of surviving 5-years is just under 70 percent, which means out of 100 patients, 70 of them will be still alive after 5 years from diagnosis.

Figure 1. Overall survival of patients diagnosed with diffused large B-cell lymphoma.

From the plot in Figure 1 you can see the importance of 5 years. The curve is flat from 3.5 years to beyond 5 years, whereas the period from 0 to 1 year the curve is very steep. That means during the first year patients are lost very quickly, whereas after 3.5 years and beyond there were no patients lost to the disease. There are survival plots that go way beyond 5 years and they show that after 5 years it is rare that a patient is lost to the disease. Therefore making 5 years typically means your risk of dying from the disease is pretty low, and it’s time to be concerned of other things like car accidents or being struck by lightning. The problem is that these plots are only directly useful for recently diagnosed patients.

After some thought I got an idea that maybe I could take the published 5-year survival data for recently diagnosed patients, and convert it to data that shows probability of surviving 5 years based on how long one has already survived. That would take an equation that I would have to derive from some basic principles of probabilities. I won’t bore you with the theoretical details, but just in case you are interested you can read it later in the Appendix of this post. The equation I derived (see Equation 1 below) takes values from a survival rate like the one shown in Figure 1, and gives the probably of surviving 5 years based on how long one has already survived after diagnoses. In the equation P0(t=5) is the probably point read from the plot at 5 years and P0(t) is the probability point read at t years, where t years is the number of years one has already survived. P5(t) is what I call the Running 5-year survival rate, and is the probability of surviving 5 years based on how many years one has already survived since first diagnosis.

          (1)

Figure 2 shows two curves based on data taken from the British Columbia paper on survival of DLBCL patients. The red curve is for all patients in the study, and the blue curve is for patients that meet a certain criteria – patients whose cancer was found in its early stages. Fortunately I happen to be in the better group. The way to read this plot is look up how long you have survived since diagnosis on the horizontal axis, draw a vertical line up to the curve, then at the intersection draw a horizontal line to the vertical axis and read off the probability of surviving to 5 years. I’ve drawn lines for myself at 2.5 years and you can see I now have about a 96% chance of surviving 5 years. However, notice at 3 years, my probability is 100%. I’m almost there! I’m almost to the point of being cured. Now I fully understand when my doctor says, “It couldn’t be better”.

Figure 2. Running 5-year survival rate based on years survived after diagnoses of diffused large B-cell lymphoma.


You have to be a little careful using these charts. For example, the fact that the blue curve in Figure 2 is at 100% after 3 years does not mean the TRUE probability of survival is 100%. It just means that after 3 years, the remaining survivors of the original 365 patients in that particular study didn’t die after 3 years. Science tells us that if we included many more patients in the study, say 10,000 patients or 100,000 patients, we would find that the blue curve will never go to exactly 100%. There is always some risk of the disease coming back. However, when the probability of surviving gets up to somewhere near 99%, one is doing very well, especially when you consider that about 1-in-4 males and 1-in-5 females will eventually die from some type of cancer.(3)

I’m excited about this. I find much more comfort in knowing quantitatively that my survival chances are so good and that nearly all the risk is gone after three years, not 5 years. My three year PET scan will be in March 2011, just before my 52nd birthday. There’s no 100% guarantee I’ll have a clean PET scan, but there are good reasons, scientific reasons, to be very hopeful. Whatever happens in the future, there is one absolute guarantee, I will thoroughly enjoy life to it its fullest.

Appendix

The following are some simple mathematics with statistics. The probability in percent P0(t) of surviving t years after diagnosis is defined as

          (2)

where N(t) is the number of survivors at time t, and Np is the total number of patients at diagnosis in the study. What we want to know is the probability of surviving 5 years based on the number of years already survived (P5(t)) after diagnosis. P5(t) is defined as

        (3)

where N5 is the number of survivors at 5 years and N(t) is the number of survivors at time t. So the probability of surviving 5 years after already surviving t years is the number of patients that have survived 5 years divided by the number of patients that have survived t years. Multiplying by 100 puts the probability in terms of percent. By combining Equations 2 and 3 and doing a little algebra we find that P5(t) can be expressed in terms of two probabilities,

          (4)

which can be read directly off the published graphs and we do not need to know the actual number of patients in the study.

To accurately obtain values from published graphs, I use a trick that involves Microsoft PowerPoint software. I use the Print Screen keyboard key to copy an image of the graph into the Windows clipboard; then I paste the image into PowerPoint. I create a PowerPoint circle object and place the center of the circle over a point on the graph that I want to record location values. Within the Format AutoShape tool I click on the Position tab and read the horizontal and vertical position of the little circle. These are coordinate values from the PowerPoint coordinate system. I enter the coordinate values into an Excel spreadsheet and repeat the process until I have enough points that accurately represent the curve on the graph. The points from the PowerPoint grid coordinate system must be converted into the graph coordinate system. To make the transformation I record a couple of points from each of the graph axes into the Excel spreadsheet where the transformation from one coordinate system to the other can be made with the appropriate equation. Once I have the curve values into Excel I can then apply my equations to manipulate the data and create my own plots.

References

(1) www.mayoclinic.com/health/cancer/CA00049

(2) Laurie H. Sehn, et. al. ,”The revised International Prognostic Index (R-IPI) is a better predictor of outcome than the standard IPI for patients with diffuse large B-cell lymphoma treated with R-CHOP”, www.bloodjournal.org, October 5, 2010.

(3) www.cancer.org/Cancer/CancerBasics/lifetime-probability-of-developing-or-dying-from-cancer

Still Alive and Kicking

It has been a long time since my last post. I’ve been working on a very important post that is requiring a lot of time and work. Also my life has been very full between work and family. In these times one cannot complain about having too much work, it is better than not having enough. When times are busy, some things have to give, but time with family is the last thing I give up. Blogging is not as high on the do-not-touch list. However, I guess it doesn’t take much effort just to say I’m still here alive and kicking.

Actually I am doing very well. My health is very good and my running has greatly improved. I am nearly over my Plantar Fasciitis and I have gotten my long runs up to 12 miles without any foot pain. I plan to run a marathon in 2011, but have not yet picked one. The marathon I pick will depend mostly on timing of family events, and my family has a lot of big plans for next year. Life is good.

2010 Giant’s Valley 5K Run/Walk

My hometown of Le Sueur Minnesota is an idyllic town on the Minnesota River valley. From the Twin Cities it is southwest about 45 miles, just far enough out that it has not yet felt the effects of urban sprawl. Every summer Le Sueur celebrates the “Giant Celebration” with a carnival, Bingo, softball tournament, a parade with beauty queens riding floats and a corn-on-the-cob feast. The celebration evolved from “Corn on the Curb Days”, a celebration hosted by the Green Giant company back in the days when I was a young boy. Giant Days is kicked off each year with the Valley 5K Run/Walk, which attracts about 250 runners, walkers, dogs on leashes and moms with baby strollers.

This year my wife, two sons and my father joined me in the 5K. My teenage boys walked with my dad, who about two years ago suffered a serious stroke (see my previous post). My dad did it! He crossed the finish line with his grandsons in just over an hour.

The racers

A motivational T-shirt. At age 64 my dad bungy jumped off the Kawarau Bridge in New Zealand.

My Dad and his two grandsons at the starting line. Notice the ominous ambulance behind them. It would follow them throughout the race.

The race begins.

Crossing the starting line.

Brining up the rear.

Somewhere around the 2km (1.2 miles) mark.

At the 3km (1.9 mile) mark.

The race passes through the former campus and headquarters of the Green Giant Company,

Approaching the finish line. A carnival is on the left.

Just a few steps from the finish line. A couple of years ago a few steps would have been a challenge for my dad.

Crossing the finish line. Notice the beauty queens on the right. They greeted all the runners with a big dish of American Pie.

My Father’s Marathon

This Saturday my wife, two boys and I will be joining my father to participate in the Le Sueur Giant Days 5k run/walk. A couple of years ago my father had a severe stroke which completely removed all sensitivity on his right side. Weeks after his stroke we didn’t know if he would have much mobility, but because of his determination he made rapid progress through rehabilitation. However, with no sensitivity on one side, walking is still a challenge for him. Last year when my wife and I ran in the Giant Days run my father said adamantly that he would do it next year. We responded with encouragement, but I silently thought he was taking on a nearly impossible endeavor. The 3.1 miles would be like a marathon to him.

A year later my father is doing well and his walking has greatly improved. He routinely walks from his home to a coffee shop in downtown Le Sueur, which is a little more than a mile each way and has a pretty steep climb up the valley slope that Le Sueur resides. (You may remember hearing the jingle, “from the valley of the jolly, ho ho ho, green giant”. That valley is the Minnesota River valley at Le Sueur, my home town). Nobody knows if he can walk an entire 5k. But isn’t that a true challenge - something we set out to do not knowing if we can? It really doesn’t matter if he crosses the finish line; he is a winner just trying.

So Far So Good

I’ve been back to running for about 3 weeks now and so far my challenge with Plantar Fasciitis is going well. I run every other day, usually 10k (6.2 miles) and yesterday I ran 8 miles. Last night I had some pain in my foot and I was worried that maybe I was pushing it too hard, but then this morning I had no problems, even just after rising from bed. Usually the pain is the worse just after getting out of bed. So I figure if I can run 8 miles and the next morning have no problems, I must be doing well.

I have been doing stretching exercises that’s recommended for Plantar Fasciitis, but what I have found that works the best for me is the ice bottle treatment. At least three times a day I roll my foot on a frozen water bottle. The hard circular shape of the frozen water bottle helps stretch my fascia while the ice provides anti-inflammatory treatment.

I’ve entered the lottery for the Twin City 10 mile race, which runs on October 3rd and want to do as much as possible to run that race injury free. By then I would like to be near marathon shape. I’ve got an itch to run a marathon in the near future.

My Wife the Runner

I’m back to running after about a 2 ½ month hiatus. During my down time I kept into shape by riding my mountain bike on 20 mile brisk rides. Then a couple of weeks ago I started to ease back into running. I now run 10k (6.2 miles) about every other day and at a very slow pace so not to apply too much stress on my foot with Plantar Fasciitis. My foot is responding very well to my adjusted training program so I’ve started to enter 5k and 10k races. It feels wonderful to be back running, but the better story is about my wife Renee.

A couple of years ago Renee would have never considered herself as a runner. Her knees give her problems and her asthma robs her breath when doing strenuous exercise. So for aerobic exercise she started out fast walking a couple of miles. The couple of miles grew to 4 to 5 miles. But as she got into better and better physical condition she needed more to get her heart rate up for a good aerobic workout, so she started running for short spurts during her fast walks. Then the short spurts became long spurts, and the long spurts blended into an entire run. Then length of her runs stretched from 4 miles to 10k.

Yesterday on the 4th of July Renee and I ran the Excelsior Firecracker 10k. This is Renee’s first 10k race. Last year at the same event I ran the 10k and Renee ran the 2 mile, which was a big deal for her at the time. This year we ran the 10k together. Rather than running at my own pace I ran alongside Renee. There was no way I was going to miss her first 10k and not be by her side all the way to the finish line. She had a tough start; her asthma was particularly strong at the begging, but she finished with probably her best time/pace for that distance.

Renee’s running is a good example of what can be accomplished if one takes their time and slowly but steadily works their way to improvement. To become a runner you don’t have to start out running many miles and beating yourself up in the process. In fact, you don’t even have to start out running; you just have to get your feet moving and challenge yourself a little bit each day.

My Son’s Graduation

My oldest son Chris graduated from high school this last week. Two and a half years ago I was hoping to survive long enough to see this day. I was ready to accept any condition, even debilitation; I just wanted to be there to see my son graduate. So you can imagine how I felt that night when they called out his name and he walked across the stage to receive his diploma. I was very proud and extremely grateful.

Next is my youngest son Daniel, he graduates in three years. However this time I’m not going to accept any condition. Not only do I plan to be there, I plan to have a couple more marathons under my belt.

The Big Picture

I was signed up for the Lake Minnetonka Half Marathon and was considering running the New York City Marathon this fall, but a problem with my left foot has interrupted my running. The pain actually started last fall after a run on a rocky desert trail in Phoenix. I thought I had bruised my heel on a rock, but now it seems like the symptoms best match with Plantar Fasciitis. For a few months the heel pain mostly occurred during the first few steps in the morning and wasn’t getting worse even though I continue to train. But a few weeks ago things changes dramatically.

 

I went for a 13 mile run and afterwards I noticed a big change in my foot. That evening it was so painful to walk on it that I crawled on my hands and knees to go from my bed to the bathroom. After that I stopped training until my foot felt better and decided to put long runs on hold. But even with shorter and fewer runs my foot is only getting worse. So I have put my running on hold until I fully recover from my foot injury.

 

I’ve been doing everything I know I should do to treat a foot injury like this. I replaced my old running shoes with new ones, I’m using an orthopedic heel insert, I been wearing shoes around the house and do some stretching exercises. I’m planning on seeking medical help to make sure I have the correct diagnosis and to make sure I’m doing everything to completely heal. I’ve read about people who have trained through their Plantar Fasciitis and now have chronic pain and no longer can run. I don’t want that to happen. I’ve prepared myself mentally for the possibility that I may not be running for a long time, maybe the entire summer. To stay in shape I’ll replace running with bike riding, and if that proves to be too much I’ll find something else.

 

Running is really hard for me to give up, even temporarily. But I have my sights on the big picture – I plan to be running marathons well into my seventies. Ever since I was passed up by a couple of 74+ runners at mile 23 of the Twin City marathon I was determined to do the same when I hit that age. To get there I’ll need to take good care of my body by eating well and training with good techniques. I still have a lot of room for improvement in both those areas. Some people look at growing old as getting worse, but I see it as an opportunity to get better – again, looking at the big picture.

Wonderful PET Scan Results

I met with my oncologist yesterday to go over my PET scan results and blood tests. My PET scan results were wonderful – no cancer. My blood test results also had a nice surprise. Since chemo my white blood count has been just under normal; that is for normal people. For chemo patients it is common to have a low white blood count for a long time after chemo. My white blood count is finally back to normal two years after completing chemo.


This is a big milestone – cancer free for two years after completing chemo. I now go onto a 6-month schedule with my PET scans. After 5 years I’ll go on a 1-year schedule for PET scans an oncology visits. That I’ll do indefinitely because of the Mayo’s diagnosis of low grade lymphoma, which is incurable. At this time there is no way of telling with absolute precision what type of lymphoma I have, the curable type or incurable type. Statistically it is more likely I have the curable type, but my doctor is playing it safe and covering all possibilities. I’m all for that. Besides, I’m getting to be an old pro with PET scans and I just breeze through them now.

Busy, Busy, Busy

It’s been nearly two months since my last post. Yes, I’m still alive and doing fine. I’ve just been so busy living regular life. I’ve been busy at work developing a new technology, busy at home fixing up the house, busy with snowboarding and following my youngest son’s high school wrestling. I’ve been busy with family, birthday parties and helping my parents move to a new home. My sons often invite their friends to stay over night, sometimes for the entire weekend. Having a house full of teenage boys can really make life busy. I’ve also been busy with my running. My training for the half marathon is going well. I’ve run a couple of 12 mile long runs and plan to make my next long run a half marathon.

Next week I have a PET scan, blood tests and an exam by my oncologist. If everything goes well, and I have no reason to believe they won’t, my PET scans will be moved from a 4-month to a 6-month schedule. That’ll be nice.

Back to the Races

I have signed up for the Lake Minnetonka Half Marathon, which runs on Sunday, May 2nd. I miss having a race on the horizon. It feels good to be back into a training routine. I’ve put together a training schedule in an Excel spreadsheet. Each week involves building more weekly miles and a longer long run. I plan to get up to a 16 to 18 mile long run before the half marathon. That’s more than what I need to do, but I want to get close to full marathon shape. I will probably sign up for the New York City marathon, which runs in early November. I may also sign up for the Twin City 10 mile, which runs the same day as the TC marathon. I found that I need to have some race, at least a 10 mile or half marathon in the plans to keep me motivated for running.

The last few weeks over the holidays I didn’t run much at all. It wasn’t just the holidays but the cold weather and crunch time at my work that made it difficult to get out and run. I’ve been training solid now for a couple of weeks and have notice rapid progress. Yesterday I was able to run 9 miles without feeling stiff the next day. However, there is a potential issue that I’m dealing with.

I’ve been having problems with my left foot ever since trail running while on a business trip to Phoenix. The trail I was running on is very rugged with lots of rocks. I think what happen is that I stepped on a rock with the ball of my foot, causing my foot to flex more than it should. Now when I get up in the morning it is painful to walk. Fortunately the pain goes away after I walk on it for 15 minutes or so. So far it doesn’t seem to be getting any worse with my running, but it is not getting any better either. Even when I practically took off a couple of weeks from running it didn’t get any better. Hopefully I can figure out a way to get my foot to heal without having to stop running. I may have to call in a pro.

Two Years is Worth Everything

Two years ago when my oncologist was giving my wife and me the possibilities for my future, I was shocked when he expressed contentment that chemotherapy could extend my life a couple of years. That was really disturbing to me. I wanted much more than two more years, especially if I was going to go through the agony, suffering and potential lethal risks that chemotherapy can dish out. Thinking that my oncologist was being conservative with his bedside manner, I searched the internet for more optimistic news, but everywhere I looked the message was the same, two years, even several months of extended life was considered worth doing the most dangerous medical procedures. Now it’s been about two years after my diagnosis of cancer and I now know the truth – life is worth every bit of struggle.

These last two years I have lived a lifetime. I’ve ran two marathons, a half marathon, and my wife has joined me on shorter races. We’ve been on many trips these last two years. My wife and I had a romantic wedding anniversary in Las Vegas. My wife and two boys have gone to the Minnesota Boundary Waters for a canoe adventure, a trip to Arizona and Las Vegas, and a road trip to Arkansas to my in-law’s cabin in the Ouachita Mountains. My two boys and I went with other family members on our first Huck Finn trip, canoeing down the Mississippi River along with the barges, and camping on sandbars. My wife traveled with me on a week long business trip to Phoenix while Grandma and Grandpa watched our boys. There were snowboard outings and countless family gatherings for birthdays and holidays and special family annual get-togethers like the Strandjord Winter Lutsen gathering on north shore of Lake Superior and the Strandjord Fall Wiener Roast at my parents place in the country.

During these last two years I’ve seen my granddaughter catch her first fish, my grandson shoot his first real gun. I saw my daughter move to Manhattan all on her own and land a job as an assistant to a COO of a hedge fund during one of the most difficult times in the job market and economy. I saw my oldest son, who’s a senior this year, make the All Conference Team in high school bowling by ranking 7^th in the conference. At the conclusion of the season he was ranked 81^st in the state. I saw my youngest son blossom in wrestling to become a captain of his middle school team and go undefeated during regular season. This year he is wrestling on the high school team and has wrestled both JV and varsity. Two years ago I was hoping to live just long enough to see another bowling and wrestling season.

Just after finishing chemotherapy I joined my wife in riding Harley’s. My wife has been a Harley biker for many years and has her own Super Glide. I bought my Fat Boy while still going through chemotherapy. When I was going through chemo and fighting cancer I didn’t put my dreams and aspirations on hold. That really helped me stay positive during those difficult times. Since then my wife and I have gone on many rides. We like head out with little planning and see were some country roads take us. As we explore the countryside we look for that special biker bar in some little town to have a hamburger and ice tea. Over these last two years biking has become a very important part of my life, and what makes it extra special is I get to enjoy it with my wife.

Those were the major highlights of the last two years and this article only takes a slight glance at them. To really convey the wonderfulness of each would require a novel to describe the sights, the sounds, the feelings, the smiles and laughter that make up each one. When you break down a life highlight into the constituents that really make it wonderful you find those elements that also make up any ordinary day. When I look back at these last two years I see a lifetime of those elements: smiles and laughter with my family, my wife snuggling to me while I hold her in my arms, my youngest son snuggling to me while we watch TV, my granddaughter giving me a leg hug while she says, “I love you grandpa”, and it goes on and on and on.

Now I get it. Now I understand why physicians show high spirits when there is a chance of extending someone’s life a few months or a couple of years even if it means undergoing a dangerous procedure; because every minute of life is worth every bit of struggle. All it takes is one minute to feel joy from a smile, a hug, a laugh, a sound, a sight, a smell or a few simple spoken words. There’s about 43,000 minutes in a month, and over a half of a million minutes in a year. That can add up to a wealth of hugs, laughs and smiles.