Cancer Treatment Decisions | Elise’s Patient Story

Cancer Treatment Decisions

Elise’s Patient Story

In this segment, Elise recounts the thoughts and emotions that she experienced when she was officially diagnosed with multiple myeloma, and goes into her decision-making path. Elise also describes how she approached getting a second opinion and ended up going with her second opinion doctor.

This is part of our story series focused on Elise, who was working and raising two young kids when she was diagnosed with multiple myeloma. She shares about every part of the myeloma experience so far, from how she got diagnosed to being a part of a clinical trial (selinexor + carfilzomib + dexamethasone) that’s been working, to diving into how she has been able to live with myeloma.

Thank you for sharing your story, Elise!

  • Name: Elise D.
  • Diagnosis (DX)Refractory multiple myeloma
  • 1st Diagnosis:Age at DX: 34 years old
  • Symptoms: Extreme pain in lower right back (for a couple years)
  • Numbness in groin
  • Tests for DX:X-ray finds tumor in sacrum measuring 9×6 centimeters
  • MRI results show what looks like a giant cell tumor
  • PET scan reveals 1-cm lytic lesion, prompting start of treatment
  • TreatmentChemotherapyCyBorD: cyclophosphamide + bortezomib (Velcade) + dexamethasone
  • RVd: lenalidomide (Revlimid) + bortezomib (Velcade) + dexamethasone
  • Clinical trial
    • SKd: selinexor (XPOVIO) + carfilzomib (Kyprolis) + dexamethasone

Thank you to Karyopharm for its support of our educational program. The Patient Story has full editorial control of our content. The interview has been edited only for clarity.


Describe the moment you got the diagnosis

I actually got an email from my orthopedic oncologist. I went, wow, I knew it was malignant.

I knew it was malignant because I went up to see my orthopedic oncologist and he mentioned to me that it was definitely malignant and he was just waiting for the pathology to come back. My husband was with me that day.   

At that point, I didn’t have a diagnosis of multiple myeloma per se. I just knew it was going to be cancer. So my husband was with me at the time and my immediate thought was, well, OK, but I thought I was going to die. Yeah, okay. I’m about to die. I’m about to go down this terrible nightmare that nobody wants to go down. 

And then my mind immediately went to my kids and then it was just really bad. It was every mother’s worst nightmare, really. 

I just remember the drive home with my husband was really, it was the worst drive of our lives.  I remember just thinking, this is it. I’ve got five years, maybe a few years with my kids. That’s pretty much how I reacted to the diagnosis.

How open are you with your kids about the cancer?

To be honest, I’m not very open. My son is seven and my daughter is just one-and-a-half. With my son, I decided I don’t want to scare him with the word cancer. 

How do I speak to my son? He knows that I hurt my back. He knows that mommy has a bad back and he knows that mommy needs to go to the doctor and take medicine to get better. 

So I’ve left it just on a need to know basis. Keep it simple. It’s worked perfectly. 

What probably actually helped me a lot is when I got diagnosed, I thought, no, this is crazy, I need to keep my life going as normal as possible even while going through all this nonsense. So I’ve worked extra hard, maybe put in a little bit more stress on myself. 

But my kids are my world, and I didn’t want anybody’s lives to be disrupted by this. So I’ve just worked really hard to just try to hold it together, to keep it together and just try to keep daily life as normal as possible for me and for my family.

If I would have had to go through a transplant, I would have had to explain a lot more because I would have been away. But you know, I’ve been able to pretty much stay close to home and there have only been a couple of overnight visits.

What was your first line treatment?

I remember the cyclophosphamide. I used to get the worst hot flashes. I would feel really feverish with that.

Describe how you and your doctor decided the first lines of treatment

Standard of care in Canada is to do CyBorD first and then go to transplant. But I had private insurance, so my doctor at the time said, well, I want to try to get REVLIMID covered for you because it’s a better treatment. So that’s what we did. 

We went through my insurance company and finally they approved it for me. And that’s when we switched to the RVd. So we did the RVd for three cycles, then I had a PET scan November 30th. 

What were the results of 1st line treatment?

The PET scan showed that my plasmacytoma was stable, which was great, and that the lytic lesion was dead. There were no more light chains lighting up anymore. 

However, my blood work initially went down with treatment and then it just slowly started to kind of climb back up a little bit. It wasn’t staggering or anything, but it just wasn’t going in the right direction. 

Getting a second opinion

At that point, I had still been waiting for my second opinion, which I still hadn’t gotten. So I had that second opinion. It was set up for December 16.

I got my PET scan and met with my previous doctor, who said, well, we’re just going to follow the trend and go from there. 

I also had my second opinion coming up, so I met with my second opinion doctor. At that point, he said, well, it looks to me like the treatment is not working as it should.

‘I have a clinical trial and I want you to go on it.’


Inspired by Elise's story?

Share your story, too!

More Multiple Myeloma Stories

Clay

Clay D.



Diagnosis: Multiple myeloma
1st Symptoms:
Persistent kidney issues, nausea
Treatment:
chemo, radiation, stem cell transplant
...
Melissa

Melissa V.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Frequent infections
Treatment:
IVF treatment & Chemotherapy (RVD) for 7 rounds
...

Elise D.



Diagnosis:Multiple myeloma, refractory
1st Symptoms:Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...

Multiple Myeloma Specialists

No shortCode found