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Thriving With Myeloma Judith’s Story Part I

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Published on April 15, 2020

Key Takeaways

  • For many cancers, there is no standard treatment protocol. Patients will be faced with many decisions during their cancer journey.
  • Some patients prefer more conservative treatment methods, others are excited by cutting-edge research and clinical trials. There is no right or wrong answer—choose the option that’s best for you.
  • When making a treatment decision, do your research, speak to your doctors and loved ones, follow your intuition, and trust you’re making the best decision you can in that moment.

“With this cancer, multiple myeloma, it's most usually found in the spine. I've only heard a few cases of it in the sinus cavity,” says Judith C., who was diagnosed with multiple myeloma at age 58 after months of inexplicable facial pain.  

Judith suspects that working in the medical field as a physical therapist specializing in pain management, delayed her diagnosis as she sought out her own explanations for the symptoms she was experiencing.

Watch now as Judith shares how a colleague’s astute observation led to her cancer diagnosis, what she’s learned along the way about decision-making and cancer treatment protocols, and what she wants other patients to know about trusting their decisions and not having any regrets.  

This is Part I of a three-part series. Watch the second video in the series at From Provider to Patient: Judith’s Story, Part II.

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Transcript | Thriving With Myeloma Judith’s Story Part I

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Judith C.:

Hello. My name is Judith C. At age 58, I was diagnosed with multiple myeloma, an incurable blood cancer. At that point in time, I was working as a physical therapist. I was a specialist in pain management. It was a multidisciplinary team. I'd been having increasing facial pain for quite a while. In fact, I went to my dentist who said, "No problem, root canal specialists, no problem." I even ended up having pretty extensive surgery on my gums, thinking that might have been the problem.

After four months of markedly increasing facial pain, I self-diagnosed myself—trigeminal neuralgia. It fit all the criteria. I was a professional. I thought I had done well. One day while working with a neurologist as a colleague in the clinic, I asked him if he had ever seen eye swelling with trigeminal neuralgia. Now this doctor that I work with, he tends to be a very methodical and slow moving gentlemen, but he stood up and he looked at the asymmetry in my eyes and ordered a CAT scan for that very same day.

They found a tumor that had eaten away parts of the bone in my right eye socket. We later found out it was a plasmacytoma. Now with this cancer, multiple myeloma, it's most usually found in the spine. I've only heard a few cases of it in the sinus cavity.

This is to say that one of the disadvantages possibly of being a provider was that I did self-diagnose myself, and there was quite a bit of time where I could have possibly started treatment earlier. When I was diagnosed in 2014, there were a number of medications, not as many as there are approved by the FDA today, and the oncologist that I first met with gave me an average life span of two to four years. That's very devastating news, as many of you can identify with that.

He spoke about doing what they call induction chemo, and then I would have a choice to have a stem cell transplant. Before this diagnosis, I was the kind of gal who, I didn't even take aspirin when I had injuries or pain, really was kind of one of those naturales. So getting used to chemo as medication, that was challenging for me.

I had a choice to start on two versus three chemotherapies with, of course, the dexamethasone (Decadron), the steroids that help the chemo work. I chose two. This brings me right to the point of decision-making. Research changes quickly and sometimes dramatically. Most people now believe and feel like they have enough research to back them up, that to start with three versus two that you have a better outcome, that you can possibly decrease not only the amount of cancer in you, but the types, the clones.

I think that I was really shocked at how many decisions there would be when I got my cancer diagnosis. I thought that there would be a well-thought-out treatment protocol, I would be told what to do. But it wasn't like that. I was lucky. Not only did I work for a hospital/clinic, but I, of course, had healthcare through them.

That put me at a marked advantage to so many people in our country and around the world that don't have healthcare. I even had the chance to go ahead and get a second opinion. In the multiple myeloma support group, they encourage people very strongly to get a second opinion with a myeloma specialist. Living in Northern California, there are a number of research hospitals, and I went and had a second opinion.

But to my dismay, they actually spoke about my cancer and my choices quite differently than the myeloma specialist I was seeing at a non-research hospital. That was extremely confusing to me. It took me a while to figure out that the research hospitals are excited about the newest medications that come along, especially if they're doing well, especially if people are getting more time, more time between treatments, possibly more time in terms of living, and they want to start you on these new medications.

The oncologist I'm working with now, you'd have to say he's more traditional. He likes to start with the chemotherapies that have been around for a while, things that are tried and true. And what I've learned and what I'd like you to understand is that it's really a choice. I personally am more comfortable with doing the more conservative. Many, many of my friends that I've met in the support groups feel opposite of me.

So, what I think I really want to share with you is that when you are making a treatment decision, get together the most information you have, the best research, speak with your doctors, your friends and family. If you're able to, follow your intuition. But most importantly know, try not to have any regrets because at that moment, you made the best decision you could.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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