Michael | CaringBridge

Michael’s Story

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Hey family and friends,
It's Michael here.  Wanted to catch everyone up with my health situation.
Sorry I'm not writing a song here so it's a bit long.

Most of you know I had a run in with a rare thyroid cancer back in 2014.
Kristy and I thought I was done with it.  We caught it early and they removed my thyroid.
Over the past few years I have continued with my charmed life as a musician and overall
happy guy just being monitored for medication and screened for cancer.

In June of 2017 as a part of my routine blood tests one of my possible cancer markers started

rising and I started feeling funny again.
Some of you know about my light headed feeling that took me to the doctor and discovered

the first cancer.

It has been going on for months and I talk about it too much with many of you probably.

That lead to a number of ultrasounds, CT scans, and PET scan tests and in November of 2017 doctors

found a small glowing spot in the upper part of my left lung. Obviously bad news.

I went in for a procedure to biopsy the spot and eradicate it with radio ablation  days before

Christmas in December 2017.

The doctor was unable to get a biopsy to tell what type of cancer it was at that time because

of bleeding so they just set it on fire with the ablation.

When I went in for a follow up visit in February 2018 the follow up tests showed my numbers
had risen by 20x. 

More blood tests. More rising cancer marker numbers. Then another PET scan in March found that I have cancer activity
in a lymph node or two surrounded by my left lung. The test markers also now appear to point to a possible medullary cancer.
Due to or related to my previous rare cancer.

The doctors wanted me to do 15 rounds of targeted radiation but given the nature of my previous
cancer and the fact that I had to deal with another spot only 4 months ago Kristy and I wanted a second

We were referred to a specialist in Thyroid cancer at Rush University Chicago.
Great doctor!

Unfortunately the second opinion has turned out to be an even scarier prospect.

We have been informed that if this cancer activity in my lung turns out to be the medullary
cancer I had before there is really no satisfactory treatment.

It was explained that the medullary tends to just keep coming like mice or roaches.
If you have one you'll have more.

You have to weigh the value of treatments against what you are getting out of killing
healthy parts of you. Meaning how much do I get out of 15 rounds of radiation stopping a tumor
that pops up only three months after we dealt with another.

The doctor has told us there might be some small hope.
It would still only be bad news but if they could get a biopsy sample
of my lymph nodes they might find it's another type of cancer and I may have

options to treat it.

They presented my case to the Tumor board at Rush a couple weeks ago and a

fantastic thoracic surgeon thought he could get a biopsy using a special

ultrasound/camera/needle device that they send down my throat and into my
lung. Then the poke through to the lymph node with the needle.

If the biopsy comes back as the "good" bad news we are hoping for that will mean it
is a primary cancer based in my lung. The solution will be that doctors will remove
the top lobe of my left lung.
It's the news that strangely enough Kristy and I are hoping for.

I had the biopsy procedure this week and happily the surgeon was able to get the samples.
Now we wait until next Thursday May 31 for the pathology to see where I go from here.

Thank you so much for the love and wishes.
Hopefully all of you know that it is great appreciated.


Newest Update

Journal entry by Michael Heaton

Hey Friends and Family,

Kristy and I got some very exciting news this week.
If you've been following you know that my previous
cancer chemotherapy was not producing the results
we had been hoping for. My doctors from Rush University
decided to stop the treatment and referred me to
a clinical drug trial at the University of Chicago Medicine.

I started the treatment on Halloween (Oct 31).
For the past month Kristy and I have spent our
Wednesdays at UCM so they can give me blood tests,
EKG, urine tests etc. for the drug company studies.

This past week the awesome Dr. Beach and my favorite
RN Livia informed us that my numbers have shown a
very dramatic change for the better!

Four days after starting treatment I was able to
stop taking pain pills every five hours all together.
That had been ongoing since July because of the pain in my bones and back.

This week we saw that my calcitonin level (which is one of the markers
for the medullary cancer) had dropped in the past couple
weeks. In fact it has dropped from a high on Oct. 31st
of 1865 to 9.5 as of Nov. 28th! In a normal person that
number is usually 14.3 to zero. Looks like
I'm practically normal. Ha!

The other number that marks the growth of the cancer
in my body is called CEA (carcinoembryonic antigen).
My CEA level has dropped since Oct.31st from a high
of 1457 to 446.3 as of Nov. 28th!
Normal CEA is of course 3.4 to zero but that is an astonishing
drop since that number has been climbing on me for the past
year and a half.

The numbers look great and in my layman's terms I'd say this 
experimental targeted chemotherapy appears to be kicking some
major cancer ass!

I'm feeling like a little bit of the pressure valve has been opened up
and I can breath a little easier right now.

We won't know for sure how it's working until the end of December 
when they have me go in for another brain scan MRI and a full body
CT scan. They can see how the tumors in my liver, tiny lesions in my brain
and my bones/spine are responding to the treatment.
We're hoping and feeling like it's going to be good news.

I asked Dr. Beach what the end game is on this drug. 
Does it cure the cancer? So far nothing has.
Does it just level off the growth
so I just take the treatment the rest of my life and this 
just becomes a chronic disease?
Dr. Beach and Livia both said.. We don't know.
It's still an experiment.

The way I'm feeling is that it's working. 
I'm OK with that!

Talk soon,
Michael Heaton

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