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’sCraig 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.