Delurking to answer questions about cures, survivor rates, and fears of long term effects, part 1

June 11, 2016 at 3:46 am | Posted in Uncategorized | Leave a comment

I haven’t added to this blog much at all since at least 2007, almost 10 years. I’ve left this blog up for information/internet research purposes. I have behind the scenes statistics and know people do stop by to read information periodically. And I get notified when someone leaves a note on one of the pages. The “About APML” page has had over 100 responses left from people who have been forced to go through this disease, and looking for a little light at the end of the tunnel of their own. I’m a little ashamed to say I haven’t always responded to everyone, but I have sent private emails of support to some. But I haven’t responded publicly. I’m glad to have given at least one spot on the internet where people can share their experiences and feel a little less alone in their struggles with this disease.

Yesterday a post by Carolyn on the “About APML” page asked this:

I’m so happy to hear you are doing so well. I was diagnosed in August 2015, and feel scared all of the time. I can’t seem to find much information online regarding long term survival rates. Can a person actually be “cured” of this, meaning they could live a long life? I haven’t read one study showing long-term survival rates.
Also, do you worry about long term effects from your treatment?
Carolyn

These are great questions overall, unaddressed by what I have up here on the blog, and I want to answer them to everyone.

A few caveats – I’m not a physician, and the best source of information for your situation is a good personal physician who knows your particular circumstance. Information on the internet is better than when I was first diagnosed in 2001, but understanding the information itself (often written in complicated medical research language) and how the information applies to you is difficult. You, the reader, may be in a higher risk group (age, other medical complications) or may not be responding to a certain type of therapy like others do. Online sources talk in generalities, and I can talk of my experiences. Neither may or may not be applicable to you.

Yeah, I know, not what you may want or need to hear. But let me go through what I understand and what has happened to me, based upon what we know today in 2016.

1 – What is “cured?”

Carolyn, first thing to remember is that with cancer doctors don’t like to say the word “cured.” (Some of the responders back to Carolyn have mentioned that their providers did use the word “cured” – and good for them – but I find that to be in the minority.) In general, if not from a recurrence of the original “cancer” there are so many other secondary symptoms and cancers that may occur that make providers reluctant to use the word “cured.” When you look at studies they talk about long-term survival rates, or years being remission free or cancer free.

But you seem to understand that as you shift from asking if you can be cured (which they don’t like to say) to what’s the long term survival rate.

2 – How long can someone be a disease free survivor of APML?

Remember that the main current treatment for APML is all trans retinoic acid, or ATRA (either alone with chemotherapy or with arsenic trioxide added). ATRA was introduced by the pharmaceutical company Roche in 1996. (Happy 20th anniversary, ATRA!) As I note elsewhere on this site, there was no treatment for APML before that time, and everyone died from APML prior to that date. It was completely and relatively quickly fatal.

So the upshot: the longest life expectancy we could be talking about from any treatment for APML in 2016 is 20 years. Each year that number obviously will go up, but for now, we only know from 1996.

This is another reason why no one can really say we’ve been “cured” of APML. We can be disease free, but how do we know we’re “cured” forever?

One of the uncertainties of life is that we don’t know what the future holds. Maybe in year 25 after treatment the chromosome 15;17 that becomes translocated causing APML becomes translocated AGAIN, and we all go out of remission. Or maybe an asteroid will hit the earth tomorrow. All we know is there’s 20 years survival for some people. For me, it’s now 14 years disease free. That’s good enough for me.

3 – So what’s the chance that someone diagnosed and treated today can make it to 20 years + disease free?

Here’s a very understandable description of what APML is from CNN. An American football coach came down with APML in 2012, and this article was written for American sports fans (so, easy to understand!). It has the least amount of medical jargon I’ve seen with the most amount of facts about current APML treatment:

Source: CNN.com

It says that with ATRA, arsenic trioxide and chemo, the long-term survival rate (that studies usually calculate at five years disease free) is about 90%. If you can or want to wade through medical journals for more information, Google “APML treatment survival rates” or something similar. There’s a fair amount of info out there.

Another good medical journal article lays out the overall treatment options of APML, including what happens if the initial treatment and consolidation with ATRA, arsenic trioxide and chemo do NOT allow for the five years survival rate, the 10% from the study above. Specific to long term survivorship, the article concludes with the following:

Relapses occurring after a five-year remission are unusual. There are single cases in which late relapses are observed, even after a period of ten years. According to long-term observations, a rate of secondary leukemia subsequent to APL of about 2.5% must be assumed. Long-term follow-ups including annual checkup examinations are recommended in order to register late toxicity, late relapses, secondary leukemia or other secondary malignancies.

Source: onkopedia-guidelines.info

So some “lay person” conclusions about an initial diagnosis of APML:

  • With current treatment, research seems to suggest that 90% of patients can make it to 5-year survival disease free.
  • A “secondary leukemia,” usually related to chemotherapy and unrelated to APML, can develop in 2.5% of patients within 5 years.
  • Relapses after that time are very rare, with “single cases” of late relapses after 10 years having been seen.
  • Participate in follow up care! That way you can find out if you continue to be “cured.”

Given the much worse five year survival rate of other types of leukemias, it’s pretty clear why providers oxymoronically consider this a “good kind” of leukemia.

The final question Carolyn asked, “Do you worry about long term effects from your treatment?”, is an important question that deserves more attention. I’ll answer it in a subsequent blog post.

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Crash! Bang! Boom!

September 15, 2008 at 4:58 am | Posted in Uncategorized | 1 Comment

They say there are two kinds of cyclists — those who’ve crashed, and those who have yet to crash.  I’ve now joined the former.

Last Saturday, September 6, I was about six weeks into training.  And it had gone pretty well.  The gears and the shifting was getting more understandable.  I was better able to make the distinction between some important concepts —

  • The goal isn’t to go fast uphill.  You should keep the same cadence, or rate of the pedals going around.  They aren’t the same.  I had been trying to power my way up the hills.  Doesn’t work well.
  • While going the same cadence is the goal, it’s not a realistic goal on really tough hills.  You may be pedaling really slowly on the steepest hills.  And that’s okay.   You’re still going up.

Funny, when Lance Armstrong is going uphills, it looks differently.  But I’m not quite Lance just yet.

So that Saturday, we had a 30 mile ride that had some pretty tough hills east of San Francisco, around San Pablo Dam near Orinda.  They call the ride “The Three Bears.”  The bears, as you might guess, were three pretty tough hills.

I did really well — I was learning the lessons above (the hard way at times), but I did make it up.   The last one was the toughest — they call it “Papa Bear.”  I did freak out a bit on the descent — very steep decent.  I’m not a wild risk taker in a lot of ways, and speed I have to work up to.  So I did it, but it was kinda freaky.

But the Crash! Bang! Boom! wasn’t on the Three Bears, or the descent.

Just as I had finished the last of the descent, and came upon the straightaway that went on about a quarter mile, the road curved and came to a small bridge over a creek.  Right at the edge of the bridge was a fairly large pothole.  I wasn’t nearly going as fast as I was on the descent on Papa Bear, but I was going fast enough to lose control after I hit it.

Apparently, I fell forward, crashed on the handlebar, and skidded a bit down the, uhm, concrete bridge.  At a pretty good speed.  Just to be clear, I wasn’t injured much at all — nothing broken, etc.

I was a little dazed at first.  I was riding with a coach at the time, and he was TERRIFIC.  He was really supportive, cleaned me up, got the SAG (Support and Gear) team vehicle to stop with a first aid kit.  We got the bike into the truck and we went  back to the start.

Here I am, at that moment (someone in Team in Training always seems to have a camera around, particularly for these kinds of moments).  I didn’t look that bad.  At that point, a really bad road rash scrape on the elbow (note the really dark circle on the bottom of the elbow) and on the knee.

And the bike wasn’t that badly hurt either — mainly just the handlebars.  The frame is thought to be OK — it’s at the bike shop for a check.

So that was on Saturday.  The coaches warned me the road rash scrapes would look and get worse over the next few days.  And it did.

Here’s what the knee and elbow looked like by Wednesday:

Note particularly the bruises on the upper leg.  The bike shorts covered that, so no road rash like the knee.  Also, check out the yellow circle in the middle of the bruise.  From what I can tell, that part of the thigh hit the rounded end of the handlebar right there as I went down.  That area was depressed on my skin on Saturday after the accident, prior to the bruising.

Here’s another bruise that showed up a few days later, on my abdomen just below my navel:

This one I love.  It looks like that large spot that you see in pictures of the planet Jupiter, the hurricane on the surface of the planet.  I didn’t even feel it during the crash or after, and yet it showed up.  I’ve been using it to show people, picking up my shirt and showing it off like LBJ did with his appendectomy scar (if you’re old enough to remember that).

None of the bruises ever hurt.  The road rash, oh, that’s a different story.

The worst was at night.  Even with it bandaged up, the road rash would tingle, itch and sting.  It wasn’t terrible, but it would wake me up at night.  I was reminded that the road rash is, well, where the concrete had scraped off a couple layers of skin, and nerve endings were exposed.  So the tingling is normal and part of the healing process.

But compared to other options — broken bones, other internal injuries, I’ll take it.

The bike is in the shop for a week, and I’ve taken off a few days of training to heal up.  I’ll be ready to start up after that.

This season dedicated to the spirit of Travis Wallace

September 14, 2008 at 8:26 am | Posted in honoree, Reasons why I run, TNT, Travis Wallace, Uncategorized | Leave a comment

This has been a very hard post to write.  I’ve been putting it off.

While the last couple of seasons I’ve had a number of personal honorees I ran for, and still are a part of me and inspire me, I’m dedicating my training and my event to Travis.

I introduced Travis Wallace at this post.  He was a nine-year survivor of leukemia and a fellow honoree for Team in Training.   Travis had a tremendous spirit and zest for life.  In the time since his last battle, he got married to a woman who I think is just terrific, Amy.  Amy and Travis became very active in Team in Training.  Not just as an honoree, but both of them became active participants, running in several marathons and half marathons.  They also became mentors to other runners, and captains to help set up the program.

The picture below is my absolute favorite picture of Travis.  It perfectly demonstrates his contributions to TNT and the people who he touched in it.  Even though he was an honoree, it wasn’t about himself.  It was about the cause, helping others understand the cause, and motivating them to make it through their events and succeed in their dreams.  He touched hundreds of people in this program, just like this one instance captured forever in this photo.

If any of you ever wondered what makes Team in Training so special, this is it.  People with gifts and talents helping others to meet their dreams, while helping to raise funds to help a worthy cause to find cures and make the lives of others better.  Travis was one of those who people who made this happen.

Another is Travis’ wife, Amy.  She was particularly helpful to me during my marathon last June in San Diego.  It ended up being a very hot day, and I had a lot of difficulty with the heat and my water and sodium intake.  I was basically sweating like a pig.

Amy ran with me for about 3 or 4 miles, giving me fluids and other refreshments, and just being there, encouraging, being very perky and friendly as she usual was.  I really honestly wouldn’t have made it without her.  I’ll always fondly remember her and another captain Carolyn who also ran with me that day.

I took a picture of both of Amy (on the left with the alien deely bobs) and Carolyn taken during the marathon:

Amy left just about after this pic was made because she wanted to finish with Travis, who was running a half marathon that day.  He did well and finished.

Earlier this year, Travis and Amy gave birth to a beautiful daughter, McKenna.

A month after McKenna was born, about March, Travis found out he had relapsed.

He started treatment almost immediately.  He went — for the third time in his 32 years of life — into the hospital and started chemotherapy.  He found he would need a bone marrow transplant.  He began a search and was able to find a suitable donor.

While in and out of the hospital, Travis spent time with McKenna.  For his wedding anniversary, Travis took Amy on a very special trip. Here’s Amy’s words from her blog:

June 24th was our second wedding anniversary. We spent the night in Half Moon Bay at the Ritz where Travis proposed three years ago. It was awesome! We had massages, a great dinner, wine and champagne and an amazing time together, watching the sunset and walking on the beach. That’s the way to live!

On Thursday Trav chartered a helicopter and surprised me with a tour of San Francisco. We flew from the peninsula up through and around the city, under the Golden Gate bridge, down the coast and back up over the mountains. We even saw a whale off the coast of Half Moon Bay. It was amazing! My husband is incredibly romantic. Sorry ladies, he’s mine!

Here’s a pic of them on that special day:

A few days later in early July Travis went back into Stanford for his bone marrow transplant (BMT). He had to have more rounds of really harsh chemo to get ready for it.  The BMT went well, and it was starting to take.  But because of the harshness of the chemo Travis underwent, he developed both kidney and liver failure.

He struggled.   But it was too much for him to overcome, even as young and strong as he was.  He passed away on August 21.

In the last couple of years, Travis married a terrific beautiful person, ran marathons and helped others to run marathons, raised money and awareness of his struggles and the need for leukemia research, had a beautiful baby girl, and lived life to the fullest.  If quality of life is the measure, Travis lived a great life.

A couple weeks before, I had contacted Amy to ask if I could train and ride in honor of Travis this season.  I sent an email, and was afraid to take up too much of her time.  This is what she wrote back:

We are absolutely honored and thankful to be a part of your training and help you with your fundraising.  Please feel free to share with your friends, family and others, Travis’ story and website.  Trav and I hope to ride along side of you in a century someday.

Well, Travis and Amy are riding with me this season.  I’ve already on many occasions thought of Travis and Amy riding with me, encouraging me as Amy did in the marathon.  They’ll be with me both during all the training and at the event.

The world is  a little worse off without Travis here.

If you would like to see pictures of Travis and his family or read his story, please visit his caring bridge site: http://www.caringbridge.org/visit/traviswallace

The marathon – link for pictures

June 6, 2007 at 7:03 am | Posted in Uncategorized | Leave a comment

It’s now been two days since the marathon, and I’m still mentally trying to figure out what it all means. I’ve also been very busy with work, and I’m traveling later in the week to go back to Texas for a family reunion, and looking forward to seeing everyone. I’ll be posting more about the experience in the coming days, but until then, here’s a link to a Picassa Web Album of pictures I took during the event (at least during the first half when I could still think and process)….

web album

And below is the first picture I took after the marathon — my good friend from college, David Moore, came up for the marathon and met me at the finish. That’s him with me in the picture, with the finisher’s medal.

p1000297.jpg

See the post above for what I’m understanding about the experience in the moments since the marathon.

Marathon day

June 4, 2007 at 5:08 am | Posted in Uncategorized | 2 Comments

It was a good day for me. A long day, but overall very good. Will post more tomorrow. But if you’re checking, I did make it — I am a marathon finisher. I am proud of that.

As I get more rest and get more perspective, my concept will change I’m sure, but it was tough. I figured out another siimilarity between leukemia and running a marathon — unexpected things pop up that change the way they go. After a cool gray day Saturday, the day of the race Sunday was hot, starting about (for me) mile 12. By mile 16 I was sweating more than normal (which is considerable), having cramps in the calves (charley horses), and was becoming dehydrated (even with drinking and eating appropriately). The TNT staff who were with me and I decided it would be best for me to walk the remainder from about mile 17, so my time wasn’t what I expected. I did better but it was still tough the rest of the way.
More tomorrow, with pictures. Time to rest the legs (and the blisters on the bottom of the feet…).

Marathon weekend — expo and pasta party

June 3, 2007 at 6:22 am | Posted in Uncategorized | 1 Comment

 It’s now about 11 pm the night before the marathon, and I’m in the hotel room.  I knew I wouldn’t drift off to sleep that quickly, so I thought I’d post the pics from today.

As part of the marathon experience, there are a couple of events that those of you who’ve done it may recall. First, is picking up your race number at the marathon expo.

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That’s number 22281…..  My lucky number!
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Here are my very good friends Mitch and Devin, who came down to support me this weekend. I really appreciated having them there — they really helped me deal with the pre-race jitters.

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I spent some of the day Saturday getting my shirt I’m racing in ready. I got some fabric paint, and added some messages on the shirt for the race. That way when people see it, they’ll know I’m celebrating the 5 year anniversary of my remission.

Then it was off to an event that Team in Training has the night before the race for its participants in the marathon — the TNT Pasta Party. At the group comes together for a pasta buffet, and hears a lot of motivational speeches.
p1000223.jpg

Coming into the event it gets a little crazy as the TNT staff and coaches yell and scream for the participants as they walk in. Above are some from my team — the Coach Dan, and two Captains, Carolyn and Carl. They’re all great,  supportive people.

p1000225.jpg

Here’s our team manager Becky. The manager makes the arrangements for the training, and particularly for the event. Apparently wearing a crazy afro wig is part of the job as well.

p1000227.jpg

Interestingly, in the hall where the event takes place, on the screens while everyone files in and sits before the program begins, they put up rotating slides of the honorees from various TNT chapters around the country. I was on one of them. I had seen these before at other TNT pasta parties I had attended for other marathons. The first time I saw it I was a little taken aback. But now it’s standard at all, apparently. I’m at more of these events than I realized.

p1000226.jpg

Here’s one of my good friend, honoree, and person for whom I run, Doug.

p1000228.jpg

Here are some fellow Peninsula Run Team teammates who will be running the marathon with me tomorrow.  Good times.

At the event, they said there are almost 4,000 Team in Training participants from around the country at the event, and collectively for this event we raised $12.5 million.  Pretty impressive.  And $6k of that was mine (well, all of you who donated — thanks again….)

I’m beginning to get a bit sleepy, so I’ll try to get a little sleep (3:45 am wake up call, so it won’t be much.)  I’m nowhere near as antsy as last night.  I’ve been looking over the blog entries this entry, and thinking a lot of how far I’ve come — not just in the last few months, but in the last 5 1/2 years since the first symptoms appeared.  Life is pretty amazing.  I’m looking forward to tomorrow as the culmination of the journey back from those dark moments early on, and the celebration of being able to live and thrive in the future.

Until tomorrow…..

Training update, 4-11-07: Running in snow flurries — on Easter in NYC

April 12, 2007 at 4:17 am | Posted in Uncategorized | 1 Comment

As you note in the previous update below, the uphill training run on Saturday 3/31 kicked my behind big time. It was tough, both aerobically and on my knees. I took a couple days off of training to get back on track.

The week of April 2 was the first week this training schedule that I was not able to get in much training during the week. That Monday I flew to Boston to do one of my seminar programs that next day, and flew back that Wednesday. With the work I had to catch up, I wasn’t able to get any training in until Friday, when I did an 85 minutes in the gym on two different machines — 45 on the treadmill and 40 on an eliptical machine.

That next Saturday the 7th I flew to New York City for a seminar the following week. So that Sunday, April 8th, being in New York, I wanted to do a long run in Central Park. It was Easter Sunday, but it was also very cold there, at least to me — wind chill at 27 degrees, and snow flurries. But I did run eight miles. It was great.

Unfortunately I forgot to bring the camera on this trip. So the only evidence I have is the frostbite.

I may have overdone it, though. Along with the running, I did a LOT of walking in NY, exploring, etc. The next day, Monday the 9th, since I knew I would have the seminar the next day and would fly the next and not be able to work out, I did get 35 minutes on a treadmill in at the hotel.

With doing a lot of walking on top of that the rest of Monday and Tuesday, by the time I left NYC on Wednesday I started to feel some pain on my lower leg when I walked. During the flight it started to hurt more. Not sure what’s going on. I may have shin splints. Will keep you posted.

But in the last few weeks, I’ve run in Orlando, Denver, Honolulu, and in Central Park in NYC. It’s been a LOT of fun.

People in whose honor I run #4 — Samuel and Helen Sandoval

February 13, 2007 at 9:20 am | Posted in Reasons why I run, Samuel/Helen Sandoval, TNT, Uncategorized | Leave a comment

I’d like to introduce another person for whom I run.
honoree_samuel.jpg

I never met Samuel Sandoval. He was not here on this earth that long. He was born in April 2003. He was a happy healthy baby until he was diagnosed with Acute Lymphocytic Leukemia (ALL) in early 2004. He then began treatment.

His treatment was not easy. Even though our ages and conditons were quite different, I can relate to what he went through in a few ways. One of the things we shared in our treatment was the need for multiple bone marrow biopsies. I’ve already talked about my challenges with them; Samuel had the same problem. After speaking to a Team in Training group last fall his mother came up to me and said Samuel also had a number of unsuccessful attempts, and a lot of pain. At that age Samuel couldn’t speak; his mother said hearing my story was the first time she understood what Samuel had gone through. I know how he felt. I was an adult at the time; I can only imagine what it was like for him and what he was thinking.

Unfortunately, our stories diverge. Only after a few weeks of chemotherapy, Samuel lost his battle. Just a few weeks before his first birthday.

I’ve had the pleasure of getting to know Samuel’s mother, Helen. She’s a funny, dynamic person. She’s run a half marathon for TNT already, and is the Honoree Captain for the Peninsula Run Team that I’m training with.
kickoff-1-27-ocean-beach-run-1-28-015.jpg

I know it’s still difficult for her. But she gives of herself and her story so much for the cause, and she graciously allowed me to use Samuel’s story. She’s a very brave person I admire greatly.

I run in honor of both Samuel and Helen.

This blog entry has been very difficult to write. Let’s hope we don’t have to hear many more stories like this going forward. We need the Samuels of the world to run with us.

The first post…

January 22, 2007 at 5:09 am | Posted in Uncategorized | Leave a comment

Welcome to The “C” Word — my first attempt at doing a blog (so be gentle). When I first heard about the blogging phenomenon, I never expected to do one of my own. But I never expected to have leukemia or go through all the things you do when you have that.

I’m hoping this blog will be a place for me to document what I went through in getting through the last five years. Five years. Seems like yesterday, and a thousand years ago at the same time. A lot of people helped me through those times, and I hope this will be a way to salute them.

I also hope this blog will be a means to communicate to those who follow me through the training for the San Diego Rock N Roll marathon. I figure a blog that you can post, add pics, etc. at times will be a good way to have a living account of those times.

I’ll be adding content as the days progress, both about the history and the training. Check back periodically, and more should be added. Comment where you feel you wish, or send me an email.

Happy reading!

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