In November of 2008, my local physician referred me to specialists at the University of Arkansas for Medical Sciences (UAMS) for a diagnostic work-up, and it was there that his suspicions were confirmed. I, indeed, at 49 years old, had multiple myeloma. Whatever the heck that was!

My first order of business, after learning how to say ‘myeloma,’ was to seek qualified information and opinions from respected myeloma centers around the country, to interview knowledgeable physicians and oncology nurses, and to talk with every multiple myeloma patient I could get a hold of.

In trying to make a prudent decision on how and where to proceed with treatment, I was advised to consider factors such as my age, the severity of my diagnosis, the general state of my health, my geographic location, insurance and financial issues, and other considerations. I tried not to be swayed by marketing hype, or strong personalities, or less-than-substantiated facts and figures as I sorted out the details.

In turn, I was counseled by various physicians that because of my advanced condition, I needed to make a fairly quick decision. Watchful-waiting for months was apparently not an ideal game plan for me.

After roughly a week of comparing notes, hand wringing, and fervent prayer, I decided that UAMS’s Total Therapy 4 clinical trial was a reasonable fit for me. I understand that it’s not the right decision for everyone, though.

For those who want to know more about UAMS and their treatment strategy, I’ll explain why I chose UAMS and describe my experience there.

Why Did I Choose UAMS?

While investigating my treatment center options, I immediately appreciated several things about UAMS:

1. UAMS treats more than 2,250 patients with multiple myeloma annually at the Myeloma Institute for Research and Therapy (MIRT).

2. Their investigators, physicians, and staff were well-respected by people I spoke with at other institutions.

3. MIRT has been managing various myeloma clinical trials since 1989, and they seemed to be able to attract funding for conducting leading-edge research.

4. Patients from across the U.S. and nearly fifty different countries have entrusted their care to MIRT physicians. I personally know patients who have experienced good results at the facility.

5. I was comfortable with their well-reasoned, aggressive approach to treatment.

6. My insurance was in-plan, and Little Rock was only four hours from my home.

7. I liked the doctors with whom I met and appreciated that they didn’t pull any punches with me.

8. The results from the Total Therapy clinical trials seemed to offer me the most hope.

What Was Total Therapy Like For Me?

I can only speak to my experience at UAMS as a patient battling low-risk myeloma.

Total Therapy, as I understand it in its basic concept, makes use of multiple novel agents in a bold, up-front treatment position to combat multiple myeloma. You throw everything into the mix to deliver a knock-out punch, and you keep hitting it. It's really not that simple, but it is a calculated, take-no-prisoners approach when compared to conventional multiple myeloma treatment.

Total Therapy 4 (TT4) is a Phase 3 clinical trial for low-risk myeloma patients designed and managed at MIRT by prominent myeloma physicians Bart Barlogie, M.D., Ph.D., and Bijay Nair, M.D., and their excellent team.

I can’t even begin to discuss finite details regarding TT4 in an article like this, but some of the key components that I experienced are:

1. TT4 employs frontline use of high-dose, multi-drug combinations to aggressively fight low-risk myeloma. The chemotherapeutic agents I used in TT4 during my two initial induction phases included:

M = melphalan ^[1] (Alkeran)
V = Velcade ^[2] (bortezomib)
T = thalidomide ^[3] (Thalomid)
D = dexamethasone ^[4] (Decadron)
P = cisplatin (also known as cisplatinum)
A = Adriamycin ^[5] (doxorubicin)
C = cyclophosphamide ^[6] (Cytoxan)
E = etoposide (Eposin)

The inductions for TT4, like any chemotherapy, were rugged, but manageable for me.

2. The TT4 protocol calls for hematopoietic (blood) stem cell collection and tandem (double) stem cell transplants. I collected 24 million stem cells and went through two successful stem cell transplants using 9 million stem cells, leaving a reserve of 15 million stem cells. Recovery was rough, as expected, but I got through the periods without any problems.

3. The stem cell transplants were followed by two rounds of consolidation chemotherapy using the VTD-PACE chemotherapeutic regimen. As with the induction phase, I experienced no unexpected obstacles.

Between each of these procedures, bridging medication (thalidomide & dexamethasone) was used to keep attacking any multiple myeloma cells still present.

4. I am currently nearing the completion of the first year of a three year Velcade/Revlimid ^[7] (lenalidomide)/Dexamethasone (VRD) maintenance therapy regimen: Velcade and dexamethasone one day a week, and Revlimid for a 21 day on, 7 day off cycle.

5. In order to assess progress, I underwent periodic CT/MRIs, PET Scans, bone marrow biopsies, and bone biopsies.

6. I was able to go through the entire process as an outpatient.

Now fast-forward ahead two years from my diagnosis. All in all, I have experienced very few difficulties during my treatment, and TT4 has produced very good results in my particular battle with myeloma. I have been in complete response for a year, and things continue to go well.

For detailed, official information about Total Therapy, UAMS, and MIRT, please visit the MIRT ^[8] website.

Everybody Loves Total Therapy, Right?

Interestingly, as time has passed, I’ve come to realize that not everyone in the myeloma universe shares my appreciation for the rigors of Total Therapy. Some well-meaning folks in that camp (patients, caregivers, and physicians alike) aren’t at all shy about expressing their opinions about the path I, and thousands of others, have chosen.

As an example, over the last few months I have greatly enjoyed attending events such as a very informative International Myeloma Foundation Community Workshop and various meetings of myeloma support groups in my region.

As I was heading to my car after one of the get-togethers, a fellow attendee asked me about my specific myeloma experience. War stories often seem in order when two myeloma patients meet.

In the bullet-point language that we multiple myeloma insiders employ, I shared that during Thanksgiving week in 2008, I was diagnosed IgG kappa, Stage 3, low-risk, lots of bone problems, major pain, anemia (low red blood cell counts), no kidney symptoms, and that I’d chosen to be treated at the Myeloma Institute for Research and Therapy in Arkansas.

‘Arkansas. Did you do that, uh, Total program?’

‘Yes, I am currently in a clinical trial called Total Therapy 4.’

‘Seriously? Not sure that I would do that. I’ve heard that it is a hard way to get better.’

A hard way to get better? That’s quite an interesting way to look at myeloma treatment!

I asked my new-found myeloma friend what he knew about Total Therapy, and he responded ‘Nothing really, except that I hear that the treatment is tougher than the disease. Who needs that?!’

Yikes! This wasn’t the first time that I’d heard Total Therapy described by someone who had less than a passing understanding of the protocol.

Many physicians have not hesitated to share their thoughts, either.

At one meeting I recently attended, a myeloma doc said in the course of his presentation that Arkansas patients can go through ‘the nuclear bomb drop’ of Total Therapy. I laughed out loud at that statement.

As I was looking for an infusion clinic near my home to begin the maintenance phase of my MIRT-directed treatment, a local oncologist stunned me by saying, ‘I am sorry that you have had such brutality. You must know that we could have performed your myeloma treatment here—without maintenance therapy.’

Measuring my response, I thanked him in Mandarin and assured him that I was feeling great and was happy having achieved a complete response. Maybe he wasn’t trying to push my buttons, but it sure felt like it!

Total Therapy is not for everyone! I know that it has its detractors. It is aggressive. Using eight powerful, up-front chemotherapeutic agents is formidable. Not everyone believes in the value, or safety, of stem cell transplants. And the jury still seems to be out for many regarding maintenance therapies. A conservative approach to treatment is incongruous with many of these facets. I get it!

Time will tell if I have made a good decision.

To be clear, I want everyone afflicted with this disease to beat it—no matter how or where they choose to be treated. If a specific multiple myeloma treatment works for you - fantastic! If TT4 is not for you - okay! If you don't need stem cell transplants - great!

I look forward to the day when a vaccine or a simple pill or something else relegates myeloma to the medical history books. I look forward to a cure.

Until then, keep fighting and stay connected out there in Myelomaville!