Yesterday I promised that I would “point-out another inexcusable error, this time made by Chuck’s hematologist. And you will learn that Chuck’s myeloma road has been far from average or easy.” Here is Part Two of Chuck’s myeloma journey:
I finally met with my hematologist, and he ordered another serum protein test as well as cytogenetic tests, a bone marrow biopsy and full skeletal x-rays. The results of my biopsy came back with my bone marrow filled with 42% cancerous plasma cells. At that point my hematologist made a diagnosis of light chain kappa multiple myeloma, but he gave me the good news that no bone involvement was found on the x-rays. This was August of 2011.
He didn’t say anything about the cytogenetic report, but I looked it over afterwards. The person who performed the test concluded that my multiple myeloma was high risk with a poor prognosis. I called my hematologist and he disagreed with that assessment. I didn’t have chromosome 13 deletion, so he felt I was standard to low risk.
Conflicting opinions over something as important as Chuck’s cytogenetic test results should have raised a red flag. Chuck’s hematologist started him on a doublet of Rev/dex; a standard low risk induction therapy combination. Today, most myeloma specialists would have added Velcade to the mix–especially if Chuck was deemed high risk. The designation may have also influenced when–or if–he should undergo a stem cell transplant. Subtleties like these are the types of things informed patients learn over time. This is a classic reason why speeding-up the learning curve is so important. Reading forward, note Chuck did his homework and realized he had an option to wait to transplant. Was he high risk? Depending on which deletions and/or genetic translocations showed-up on Chuck’s report, experts could have insisted he transplant right away, or skip transplanting altogether. Chuck was wise to seek out a second opinion at this point.
My hematologist started me on a regimen of Revlimid and Dexamethasone. His plan was for me to do stem cell collection after five cycles. I started my initial therapy and got close to a complete response with the exception of very slight traces of paraprotein in my urine. Meanwhile, I began educating myself on my options and became aware that there was a philosophical split in the MM community as to whether it was better to get a transplant or treat with drugs exclusively. I knew I wanted to have my stem cells collected, but I wasn’t sure I wanted to get a transplant right away, if at all.
I live in the Atlanta suburbs, and chose to have my stem cells collected at Emory Hospital under the supervision of a respected multiple myeloma expert at the Winship Cancer Institute, Dr. L. Even though Dr. L recommended a stem cell transplant because of my IGA numbers going up, I reasoned that this was because I had discontinued REV-DEX in preparation for stem cell collection, and my first hematologist, Dr. S, agreed. Therefore, I chose to see what happened if I continued on REV-DEX instead. Indeed, my counts stabilized for a couple of months, but then I relapsed after about 8 cycles as Dr. L had predicted.
At that point, I scheduled a transplant through Dr. L, and I went through a couple of cycles of induction therapy, using VCD (Velcade, Cytoxin, Dexamethasone). This worked, and I entered Emory Hospital for a stem cell transplant on my birthday in October 2011.
During orientation, we were told that we should walk at least one mile per day if possible, and that the one-day record was 7.5 miles. Also, the record for an entire stay was 42 miles. Being the competitive type, I told my youngest kids, Andrew, age 7, and Samuel, age 10, that I would try to break at least one of the records. My chemo day went without a hitch, and I walked 10 miles the next day to break the one-day record. My transplant day was uneventful as well, with only some slight tingling around my shoulder blades. My main challenge during my stay some nausea and loss of appetite. I continued walking and got up to 40 miles by day 9. At that point, the attending doctor visited me and said “There’s no magic about being at the hospital. I’m discharging you with the understanding that you’ll come to Winship for daily blood tests.” He said that they’d ready the paperwork and that I’d be able to leave soon. At that point, I realized I still needed to walk if I was going to break the 42 mile record. I immediately began walking until I’d gotten to 43 miles. Shortly thereafter, I was discharged.
It took about a month for me to feel normal, and at 100 days my blood profile was that of a healthy person. I went back on REV-DEX for maintenance therapy. Unfortunately, I only went 8 months before I relapsed again in June 2012.
I concluded that I had an aggressive form of multiple myeloma. At that point, I entered a clinical trial for a combination of Carfilzomib, Panobinistat, and Dex. My counts improved for about a month but then began to go up again. After completing about 3 cycles, Dr. L came to see me and said “We have a problem.” By then, my m-spike was almost 5 and my IGA numbers were way up. I would need periodic blood and platelet transfusions.
Dr. L said I had three options. The first two protocols would be on an outpatient basis, and we would know if they were working in 60-90 days. The third option would require me to spend a week in the hospital and get 96 hours of V-DCEP treatment. It would be intense, but we would know if it was working within a couple of weeks. Also, I would have to repeat the process and do a second round of treatment three weeks later…
High risk or not, Chuck’s myeloma was/is certainly aggressive! Let’s back-up and define a “second opinion.” I’m not criticizing Chuck here. He believes that he sought-out a second opinion. And if everything had been going right, he did.
But by definition, when approaching an important therapy crossroad while facing aggressive disease, a second opinion should have been from another established myeloma expert at one of the top half dozen or so cancer centers that specializes in our cancer. Going from a local medical hematologist to a regional specialist doesn’t meet this criteria; not after relapsing so quickly several times using standard treatment protocols.
I know a number of patients under the fine care of “Dr. L.” Chuck was in good hands! What I’m about to add is no reflection on Chuck’s choices or those of his doctors.
This is a classic teaching moment. At this point, a patient is probably reeling and back on his or her heels. Standard therapy hasn’t worked well. They probably feel lousy and are scared–really scared. The perfect time to call the IMF’s patient hotline, and then to seek out one or more of myeloma’s “big guns.”
If the patient can feels up to it and can afford to travel, now would be the time to hit the road; ideally spending three or four days at Mayo Clinic in Rochester, UAMS’ MIRT in Arkansas, M.D. Anderson in Houston or Dana-Farber in Boston. I have learned that any of the top destination myeloma centers will see patients with situations similar to Chuck’s on short notice, often prioritizing their cases and assigning them to one of the established “myeloma all-stars:” names like Rajkumar, Kumar, Dispenzieri, Barlogie, Orlowski, Richardson or Anderson. For example, my former treatment center, Mayo Clinic, features a half dozen big names–and as many as 24 hem/oncs that specialize in multiple myeloma on staff.
Once testing is complete and a treatment plan established, a patient might consider taking an additional step: having the plan reviewed by one or more additional experts in the field. This can be done via email, using digital records.
Can patients do well without taking such aggressive steps? YES! All of this isn’t necessary for the vast majority of patients. But if standard therapies aren’t working, get one or more opinions from experienced myeloma specialists! Ask them to explain their recommendations. Expand your health care team to include as many smart people as possible ASAP. Because once myeloma starts growing unchecked, it’s hard to slow it down.
Chuck and his specialist considered an unusual and aggressive treatment protocol. Tomorrow Chuck will tell you how it all turned-out, and how he’s doing now.
Feel good and keep smiling! Pat