POEMS syndrome survivor: It’s OK to ask for help

I was diagnosed with Guillain-Barre disease in 2012 and chronic
inflammatory demyelating polyneuropathy (CIDP) in 2013. But I learned
that I actually had “POEMS” syndrome — a rare blood disorder related
to multiple myeloma — at MD Anderson in January 2014.

After a year and a half of being misdiagnosed by other doctors,
finding out that I had a blood-based cancer brought me a strange kind
of relief. By that point, my peripheral nerves were so badly damaged I
could barely stand. I’d lost most of the use of my hands, too, so I
was willing to try just about anything.

Thankfully, I finally found the help I needed at MD Anderson.

How I learned I had POEMS syndrome

One symptom of POEMS syndrome (which stands for “polyneuropathy,
organomegaly, endocrinopathy, monoclonal protein, skin changes”) is
leg weakness. I began experiencing that in the fall of 2012, when I
started having trouble walking around. Occasionally, I felt a stabbing
pain in my left hip. But I didn’t go to the doctor until I could only
walk my dog a few blocks one day.

I was first diagnosed with Guillain-Barre disease, then later it was
changed to CIDP. Despite receiving  intravenous immunoglobulin
infusions from donors, I continued to get weaker. Eventually, I had to
use a wheelchair, and my weight dropped from 210 to 135 pounds in just
a year.

Finally, my wife took me to see a different neurologist. He ordered
a PET scan, which revealed a small tumor in my left hip. That’s when I
came to MD Anderson.

POEMS syndrome specialist gave me hope — and saved my life

Most doctors have never even heard of POEMS syndrome, much less
treated it. And some neurologists wouldn’t recognize the disease if
they saw it. It’s often misdiagnosed as CIDP, so patients with
moderate to severe polyneuropathy who are being treated for CIDP
should be tested for POEMS. Especially if the CIDP treatments aren’t helping.

At MD Anderson in Sugar
Land
, I was paired with an oncologist who’d worked with the
nation’s foremost expert in POEMS, so he knew a lot about it. And he
not only gave me real hope, he also saved my life.

Once I’d been definitively diagnosed with POEMS, I needed a stem cell transplant. So, my oncologist did
everything he could to help me get healthy enough to have one. I was
in such bad shape by the time he first saw me that I had to have radiation treatments, chemotherapy, and heart and lung surgeries
first. I also had to overcome pneumonia.

My complicated recovery from a stem cell transplant

I finally had my stem cell transplant under Muzaffar Qazilbash, M.D., in January 2015. The
procedure was a success, but the radiation treatments I’d received the
year before had damaged my small intestines. I developed a painful
blockage called an ileus, so I couldn’t eat normally. I had to be fed
intravenously. My weight dropped to 109 pounds.

Then I met with MD Anderson’s Craig Messick, M.D. He said, “Look. I will do a
loop ileostomy and you will have a colostomy bag for a few months. But
you will eat again, you’ll get strong enough that I can do a resection
and get rid of the stoma, and you’ll be out of that chair in no time.”

I said, “Sure, Doc. Whatever you say.” But I didn’t really believe him.

Amazingly, he was right. It happened just the way he said it would.
I had the ileostomy in June 2015 and the resection in September 2015.
And by January 2016, I was walking around with a cane. I could eat
again and had no more pain. Dr. Messick gave me my life back.

Today, I no longer need a cane or a wheelchair to get around, but I
have some lingering issues with using my hands. And I had to relearn
how to walk, eat and dress myself. But I’m more or less back to
“normal” now, and I can still work as a software engineer and create art.

How I learned to ask for help

One big lesson I’ve learned through all of this is that it’s OK to
ask for help. Having a rare cancer can be lonely. Sometimes it feels
like you’re the only one who has it. That’s why I suggest connecting
online with others who have your specific type of cancer, or reaching
out to myCancerConnection, MD Anderson’s one-on-one
support program for patients and caregivers. It really helps to talk
to other people who have experienced — or are experiencing —
exactly what you’re going through.

I also wish I hadn’t waited until my last surgery in September 2015
to reach out to the Psychiatric Oncology department at MD Anderson. I should’ve done that right from
the beginning. Cancer tears you apart emotionally and physically. It
can tear your family apart, too. So, start therapy right away, and if
you have children, have them see a therapist as well.

You think you can handle it. And your spouse may think that, too.
But there is so much support out there, from people who really want to
help and who know how to. So, turn to them. Just ask. You won’t regret it.

Request an appointment at MD Anderson online or by
calling 1-877-632-6789.