Sean’s Burgundy Thread: My Adventures Through Total Therapy
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 (Alkeran)
V = Velcade (bortezomib)
T = thalidomide (Thalomid)
D = dexamethasone (Decadron)
P = cisplatin (also known as cisplatinum)
A = Adriamycin (doxorubicin)
C = cyclophosphamide (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 (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 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!
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Related Articles:
- Northern Lights: My History With Myeloma And How Things Have Changed Since My Diagnosis
- Living For Lamingtons: Managing Risk
- Northern Lights: How My Husband Helps Me Deal With My Multiple Myeloma
- My Myelomaverse: Living In The Universe Of The Vast Unknown
- My Myelomaverse: Hygge, Houseplants, And Well-Being, Oh My!
Hi Sean! We had a very similar experience to you and were probably just missing each other in Little Rock. Unfortunately we were in N. California so it was a very big decision for us to ignore the 2,220 miles from our home to Little Rock for treatment. Dave was 48 and low risk. We have encountered resistance and misunderstanding, as well as misrepresentation of what Total Therapy is all about and MIRT's treatment. I have had many people contact me about Little Rock and what they should do. They are actually "afraid" of its reputation and size. I have convinced all but one to at least go and check it out and all received treatment there and are pleased with their experience. There is much I could write about Little Rock and I do on my blog. But the reason I chose LR was primarily because I worked for a research professor and I knew how long it took for research papers, once submitted, to get through the peer review process and approved for publication. I asked our diagnosing doctor to be honest and admit that when he initially diagnosed and treated my husband he basically went into his office, pulled out the latest Blood Journal and read the most recent papers on treatment recommendations and that those papers were most likely from Arkansas. He turned to me and said, "You have an uncanny insight to what often occurs and you are correct." I then said, "and those papers you are reading are a minimum of two years old when you factor in the review process?" He said, "Again, you have an unusual understanding of how this works." That pretty much cinched it for me. If Dave was going to be a guinea pig, then we were going to where the research was occurring and get in on the most up to date knowledge of treating the disease. I wrote about this more fully on one of my posts. But I can tell you that, we have never looked back or second guessed our decision.
Great article and I'm thrilled that you are doing so well.
Best,
Lori
Just wanted to give a little insite my mother was a patient there as well she passed away on aug 19th of this year but not without a fight and the doc. at uams to fight with her without them she would not have made another week she was that bad we got her there and within 2 days she had no pain she went thru 3 rounds of cemo and 2 transplants within 3 months but after all that it was not the mylomea that took my mother she developed a infection that she could night fight but if we could do it all over we would have brought her to uams first they are the best and never will you hear from my family a complaint i stayed with her there and the knowledge they gave me will blow your mind and the compation of all there is undescribale again they are the best when it comes to this illness.
Sean,
Thank you very much for your reporting about MIRT and on your treatment and condition. I am on SWOG 0120 clinical trial, and, if my MGUS ever progresses, UAMS-MIRT will be where I get treatment. I have had several bone marrow biopsies, and tons of blood work, all with NO pain due to the expertise of the doctors and nurses there.
UAMS-MIRT is light years ahead of any other facility for treatment and progress in defeating myeloma.
I love Dr. Barlogie, Dr. Nair, and Dr. Waheed, as I'm sure you do also.
Good luck to all the myeloma people out there! UAMS-MIRT =HOPE!
GB
Sean, Great perspective on UAMS. I too went to MIRT nearly 5 years ago, and I have been on a listserve for most of this time as well. It does appear that every time UAMS comes up for discussion it creates such a storm of emotions, both positive and negative. The positive always comes from people who have experinced the excellent care that they have received at MIRT, and the HOPE that is always present in all the people who go their because of the focus on cure. That we can pray and hope that we can have the same outcome as other cancers, which is the possibility of cure. The negative is from people who have not had any patient experience at MIRT, but are may be in the care of many excellent cancer and MM professionals who are equally convinced that theirs is the best approach. With the new novel therapies their is less of a gap between the two philosophies. However,even after almost 5 year and all the research and information I have followed over the this time, I would still get my transplants at MIRT. I have been in CR for all of this time and look forward to my cure.
Hello! Thank you all for sharing your personal thoughts regarding UAMS & MIRT. I have also received approx. 20 private e-mails on the subject.
Given all of the information that I had at my disposal when diagnosed, I remain comfortable with my choice to seek Total Therapy treatment in Little Rock. I still maintain that UAMS is a great place to get an opinion (second or otherwise) about MM treatment options.
I was certainly not in the position to NOT make a decision. I believe that I had to do something or I would not be here today. A life or death scenario? You bet!
The decision tree in battling MM is anything but crystal clear. Undergoing the rigors of Total Therapy most likely doesn't fit the profile of every patient. Only trained, knowledgeable myeloma specialists can provide expert opinions - and even then, disagreements abound! My trust and confidence in my team at MIRT is high.
Should you go through high-dose, multi-drug treatment or a more conventional route? Transplants? One or two or none? Maintenance Therapy? When it comes down to it, I've qualified my doctors and embarked on a plan. If it stops working, I'll deal with it as the staunch advocate for my health that I need to be.
I pray daily for all world-wide MM patients, doctors, researchers, journalists, drug companies, caregivers - anyone joining in this fight. ANd that includes you!
Stay well! Sean
My husband has tried 3 different chemos (revlimid, velcade and then doxil/vincristine). They started to work but then became ineffective. We got a second opinion from the Mayo Clinic in Rochester. They would like to start VTD-PACE and then hopefully an allo transplant from a sibling (praying one of his 4 siblings is a perfect match). My husband has high risk, IGA KAPPA light chain multiple myeloma. Have any of you gone through this regiment for high risk myeloma? Also, any suggestions as to where to have the transplant done - the Univ. of MN vs. Mayo Clinic for an allo transplant?
Stay well!
Barb
Hi, Sean and others:
We are evaluating my wife's treatment options. She is IgG Lambda and currently still at the smoldering stage but was warned by her diagnosing doctor that she might need treatment within the next year. We are leaning towards UAMS because she is 46 and we like the upshot and potential we have seen in the results of TT. One thing that is constantly on our minds, however, is whether she can take the intensity of the treatment. She is petite, weighing 93 pounds and standing at 5'2". Even though she is generally healthy, she is very thin, which you can see from her weight, and definitely not the physically strong type. Have you seen any other patients of similar physique and do you think TT is something that she can tolerate?
Many thanks for your comments and opinions!
Hello, Ben. I'm sorry to hear that MM has visited your wife; it's one of those 'life's adventures' that we could do without. In answer to your question, I have seen MM patients at UAMS/MIRT of all stripes, including people of small stature. One of the most feisty, 'I-ain't-gonna-let-myeloma-beat-me' folks I met was a little old back-woods granny whom showed me a lot about courage. I can't speak to your wife's situation directly, but I heartily encourage you to contact the team at UAMS for a valued opinion. I pray that you are both blessed with many more years of good health. Sean.