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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