Paul's Heart

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.