Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 6, 2017”

If My Survivorship Will Mean Anything… Part 4

Please go to “Paul’s Heart” on Facebook so that you can view the actual video recordings with Bill Shirkey.  I was not able to upload them on this page.  The female voice you hear in the background is Michael’s mother who accompanied me to the interview.

Again, I want to be perfectly clear, I AM NOT SAYING NOT TO USE ADRIAMYCIN OR ANY OTHER ANTHRACYCLENE.  These posts have been about showing the need, and the benefit of technology that is available, but unfortunately not being used by EVERYONE and it should be.  It is unacceptable to hear the words “not cost effective”.  Tell that to Michael’s mother who today is recognizing the 3rd anniversary of her son’s passing.

Please, whatever form of social media you use, we, as advocates, patients, and survivors can make a difference for those who have no idea what is happening with their bodies, and for those about to face this journey.  Like the expression goes, “one person can make a difference.”

I have enough followers and readers of “Paul’s Heart” to make that difference no matter what corner of the country or area of the globe you live.


Michael and I shared a lot in common.  Our birthdays were just one day apart.  We were both diagnosed with Hodgkin’s Lymphoma around the same age.  We both got to hear the word remission.  We both suffered heart damage from the treatments we received.  But that is where the similarities end.

On a personal note, and this is something I struggle with every day, I went through so much more in regard to chemotherapy and radiation (he never received radiation like I had).  I am here.  Michael is not.  And Michael is not the only one.  This is just a small part of the survivor guilt that I have carried with me most of my survivorship years.

Which is why I have titled this series of posts, “If My Survivorship Will Mean Anything…”

Please, I cannot stress enough the value of the information that I have researched and shared with you.  It is now up to you.  Be your own advocate.  Be the advocate for someone who is not able to speak up for themselves.  Do not take “no” for an answer to take this extra precaution when dealing with a chemotherapy or radiation treatment that knowingly has the potential for heart damage.

Michael, this is for you.

If My Survivorship Will Mean Anything… Part 3

What I am about to begin discussing is not conjecture, it is fact.  It is scientifically proven.  Only recently has medicine realized that closer follow-ups need to be made regular protocol to prevent damage not just from anthracyclenes, but any treatments.

In my time of treatment, there was not follow-ups other than bloodwork during my treatments.  If my counts were too low, the treatment was either reduced, or delayed.  But that was it, just bloodwork.  No other testing of any critical systems of my body.  And once I reached the magical 5 year mark, I basically vanished from the world of oncology until I was diagnosed with a “widowmaker” heart blockage caused by my treatments 18 years earlier.

At least in major cancer centers, today, patients are getting the “baseline” studies done prior to treatments, and depending on the drug being used, follow-up studies during treatments, and of course annual follow-ups following the conclusion of treatments.  And this is for life.  Finally, after realizing that Hodgkin’s survivors were living long enough to develop late effects, medicine finally had to learn how to not only recognize us, but how to treat us.  Sure, treatments have gotten better and a bit safer, but there is still a long way to go.

Now, I would like to introduce you to Bill Shirkey.  I got to meet Bill shortly after Michael had passed away.  Bill is the director of cardiodiagnostics and cardiac imaging at the Naples Community Hospital Heart Institute, associated with the Mayo Clinic.


I sat down with Bill to discuss the exciting and lifesaving technology that he has studied and uses to help prevent issues such as damage from cardiotoxicity from chemotherapy as well as other health issues.  I am also going to try and upload the video of demonstrations that he gave of the equipment used, and how it works.  If I cannot do it in this format, it will be uploaded to the “Paul’s Heart” Facebook page.

Paul:  What was the result of your studies?

Bill:  The development of a protocol for oncology patients receiving cardio-toxic chemotherapy drugs.

Paul:  Please describe the equipment you use and its accuracy.

Bill:  The Phillips EPIQ 7.  There is a high degree of sensitivity.  It is the top machine for this type of work on the market.

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Paul:  What are the benefits of this technology?

Bill:  We can predict cardiotoxicity in the early stages before there is permanent damage, and can help guide therapy modifications or changes.

Paul:  How soon can damage be recognized with this technology?

Bill:  A few months after therapy starts.  In some cases, as early as following the first dose in the case of anthracyclene drugs like Adriamycin.  The damage to the heart muscle can be seen as soon as the first or second treatment, and dealt with before the danage to the heart is too severe or permanent.

Paul:  While this is a definite benefit to current or new patients, is there a benefit for long term cancer survivors who are decades out in remission?

Bill:  Yes.  3D echo would give an accurate size and ejection fraction.  Strain would indicate myocardial performance.  It would help guide therapy if needed or establish if patient is clear cardiac-wise.

Paul:  Who else is using this technology?

Bill:  We are the only site in Naples using this technology.  Only some oncologists are aware of this technology.

Paul:  How expensive of a test is this?

Bill:  Generally around $1500-$2000 which is much better than the cost of medical intervention for severe heart damage.

Paul:  Are there any harmful effects of the test itself?  How long does it take?

Bill:  There are no harmful side effects of the test itself.  Baseline testing takes approximately 30-35 minutes with follow-up testing around 20 minutes.

(it should be noted, Bill actually demonstrated the machine for me on himself to show how it worked)

The videos of demonstrations and interviews cannot be uploaded on this blog.  I will post them on “Paul’s Heart” on Facebook so that you can see these for yourself.

Please, “share” this post.  With Adriamycin being used to treat not only Hodgkin’s Lymphoma, but also breast cancer, this information and knowledge is crucial.


If My Survivorship Will Mean Anything… Part 2


This was Michael.  You can read about his story on the “Paul’s Heart” page titled, “Michael.”  There I go into more details of his story, as this post is about a promise that I made to his mother, following his passing.  I was going to find some way, some how, to get some very important information out to the general public, since medicine seemed too slow to do, to prevent another tragic ending, like Michael’s.


I have met many other survivors over my decades of survival.  This photo is the first meeting I had with Michael (along with his mother).  Michael had just completed 12 rounds of chemotherapy for Hodgkin’s Lymphoma.  I had already been planning a trip to Florida to launch a campaign of survivorship speeches, in celebration of my upcoming 25th anniversary of beating cancer.

I had known Michael through the majority of his treatments, communicating via Facebook, emails, and Facetime.  In fact, though he had been getting emotional support from me, it was actually him who would help me deal with a critical situation when my father was diagnosed with his own cancer to be dealt with.  Michael had included me on a lot of his chemotherapy treatments via Facetime.  And when it came to dealing with my father, I was actually better prepared as his caregiver to deal with some of the newer situations of treatments.

Over those 12 treatments, I do not ever remember knowing another patient who carried the outlook, the desire for the knowledge of what he was going through, and the ability to carry his family through the emotions of a cancer journey.

But just as I hinted before in prior posts, and on the page “Michael”, the one drug used to treat him, just as was used on me, and the majority of Hodgkin’s patients, had caused a reaction that was already known to have the potential to do so.


This is Adriamycin.  It is and has been, the go to chemotherapy drug for battling Hodgkin’s Lymphoma.  And this is where this post is directed at everyone else.  Because this drug is now being used to treat other forms of cancer as well.  And while Hodgkin’s is considered a rare form of cancer by comparison, this drug is now being used to treat breast cancer, which affects millions more patients.

For those of us who have been exposed to this drug, many of us call it, “the red devil.”  And I want to clarify and state clearly, I am in no way trying to convince anyone to be against the drug.  Quite the contrary.  I am alive 27 years later because it did get me into remission.  But there is a small percentage of patients who develop a very serious issue because of this drug.  And with the inclusion of treatment for breast cancer, that percentage I am sure will climb.  Admittedly, this drug is successful.  And it did give Michael the declaration of “remission.”  When the picture above was taken, he was two weeks past treatment.

No, the warning of this post is not about the drug.  The drug is necessary until something better and safer is discovered.  But the seriousness for the side effect, no matter how small the percentage, is not taken seriously enough, world wide.  Protocols are now being established for follow up testing during treatments, as opposed to “baseline” studies done prior to the beginning of treatment and at the conclusion.  Because as the next parts of the this post will show, the technology is there, to make sure that in spite of the dangers of this drug, monitoring of the side effects of this drug are possible.  But the trick is getting every oncologist on board with just this simple technology that I am going to introduce you to shortly.

The Childrens Oncology Group today clearly states, what medicine did not decades ago, that the use of anthracyclenes have the potential to cause cardiotoxicity including but not limited to congestive heart failure.  COG has also written guidelines on the dosages to be used and frequency based on age and size, to be adjusted as necessary.  But only recently has it been discovered just how early heart damage can be detected and by what technology.

This technology was not being used by the oncologist that treated Michael.  It is not known if the oncologist was even aware of the technology or was just aware of the apparent low risk involved.  Michael was not known to complain about discomfort, but clearly, something was wrong.  And other than the baseline echo that had been done prior to the start of treatment, and the echo that he never got to have the opportunity to have done, there was nothing done between those times.  And today, is the third anniversary of Michael’s passing at the age of 24 from Hodgkin’s Lymphoma.

Knowing now what I know today, I believe his death could have been prevented.  Yes, Adriamycin is the top choice to get a Hodgkin’s patient into remission, and now it seems a choice for breast cancer.  But precautions and follow ups must be taken and done, to make sure that if something is going wrong, perhaps a different mode of treatment, or at least the modification of the drug, can be done, before it is too late.

Please share this post as this story continues.


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