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Advice for Newly Diagnosed Patients From a Survivor

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Published on March 11, 2020

Key Takeaways

  • Carl had MGUS for 10 years before it progressed to active multiple myeloma. MGUS stands for monoclonal gammopathy of undetermined significance.
  • He is currently on a CAR T-cell trial.
  • Carl advises newly diagnosed myeloma patients to go to a major clinic or get a second opinion from one.

Multiple myeloma patient Carl Burgman shares his diagnosis and treatment journey along with advice for other patients.

Watch as he discusses his results from genetic testing, how his doctor worked with his insurance company and his recommendations for newly diagnosed patients getting myeloma care.

This town hall meeting is sponsored by Janssen Biotech, Inc. and Karyopharm Therapeutics with additional support to our partner, Myeloma Crowd (MCR), from Takeda Oncology and Foundation Medicine. These organizations have no editorial control, and Patient Power is solely responsible for the content. It is produced by Patient Power in partnership with The University of Texas MD Anderson Cancer Center.



Myeloma Crowd The University of Texas MD Anderson Cancer Center

Transcript | Advice for Newly Diagnosed Patients From a Survivor

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.

Carl Burgman:         

I’m Carl Burgman. I’m from Tulsa, Oklahoma. My myeloma issues really did start with a compression fracture in the back. That was right at about 12 years ago. My internist at the time was very good about going through—I was 48 at the time and that’s kind of odd for osteoporosis in men. He did have all the normal testing for osteoporosis, but he did have the testing done for the serum protein.

I showed up that I was positive for an M spike. He sent me for bone scans and then to a hematologist. They came back, did the bone marrow biopsy and it was MGUS I was followed for probably a little over 10 years every six months to have blood tests or if it went up three months and then another bone marrow in the middle of that.

Finally, at the end of 2017, my M protein started going up, and I finally had the bone marrow done again and got my diagnosis February 28th of 2018. My oncologist in Tulsa just looked and said, “Well, you’ve now gone into multiple myeloma, and you’re a high-risk patient, p17 deletion. I’m sending you directly to MD Anderson.”

So, I feel like once I got to MD Anderson and actually became Dr. Patel’s patient, I really hit the jackpot on care, because I got started, went through the tests. She told me originally that I would be orb in the smoldering range. I went through the isatuximab (Sarclisa) clinical trial, had another bilateral bone marrow and one of them came up at 60 percent. So, I got knocked out of that.

I got set up then to do the induction treatments and she got me started and actually did KRD for induction and only had two months of KRD before I was knocked down before getting into the stem cell protocol. At that time, I also qualified for a vaccine trial. 

So, before the stem cell and that, they gathered all myeloma cells, sent those off, then did the dendritic cells after the stem cell and my numbers were knocked way down both with the KRD and the stem cell. I came back, and I had qualified on the vaccine and they went to mix the dendritic cells and the myeloma cells, and all my myeloma cells died.

So, I got knocked out of the vaccine side and got put into standard practice of care. So, I was on lenalidomide (Revlimid) and going through and my numbers all looked good. Then April of this year, my light chain ratio started going out of whack. I started relapsing in April. 

So, it just so happened at that time that the clinical that Dr. Patel is the lead on for the CAR-T cell, the BB2121 was opening up and there’s an arm for that for my qualifications, relapsing within 18 months after an autologous stem cell. She worked really hard with the sponsor and actually with my insurance company.

I can’t say enough that the nurse liaison at the insurance company told me afterwards that she has never worked with a doctor so caring and compassionate about getting a patient into a clinical trial. She was a clinical trial nurse before she became the liaison at the insurance company. She’s worked with several of them.

So, I think that I’ve been just extremely blessed and lucky with this, to have this stuff going on and not have pain. I’m lucky. Bone marrow biopsies don’t bother me. So, I’m blessed there. I think I’ve run up to about a dozen now.

Jack Aiello:               

Carl, what advice would you give to especially newly diagnosed patients?

Carl Burgman:         

The one I would definitely give would be to get to a major clinic. A lot of places, they have good cancer clinics but the oncologist is treating breast cancer, kidney cancer, lung cancer, here’s a multiple myeloma—if you’re especially high-risk where you have the chromosome issues and that, the majority of those places probably do not have the access to the proper things to give you the treatment right and don’t have the access to the clinical trials.

If you can get the referrals to an MD Anderson, Emory, Mayo Clinic, Dana-Farber. If you can get to those places, you’re going to be—even if you’re not high-risk, you’re going to get the most current, best knowledge of what’s going on with your disease. 

If it’s something that can be treated at home, then you have that information and that treatment recommendation from the major clinic to take back with you. I feel really lucky, because my oncologist knew that he wasn’t going to treat a high-risk patient. They were affiliated with MD Anderson and got me here.

I think that would be the first thing I’d recommend to any newly diagnosed multiple myeloma patient is if you’re not at a major clinic or near one, get to one for at least your second opinion.

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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