Santa Rosa, California -- a town of about 150,000 people about 50 miles north of San Francisco.
Where do you currently live?
When were you diagnosed and how old were you? (example: 8/8/08 - age 28, IGG Kappa)
I was diagnosed in October, 2008 at the age of 40.
Did you know what MM was prior to diagnosis?
Not a clue. I remember my primary care physician, who spotted elevated total protein in my blood during a routine cholesterol test, called to say "I've found something abnormal. I could be one of two things. I could be a condition called MGUS, or it could be something called Myeloma." I said "anything that ends on 'oma is bad." That was the first time I'd heard that word.
Is there anyone else your in family with MM?
What led to your diagnosis?
Total protein >8 led my primary care physician to refer me to a hematologist, who did X rays and bone marrow. My other blood counts were all normal -- white count, hemoglobin, platelets all fine. Upon diagnosis, this struck them as odd. They were very surprised when the bone marrow came back 70% plasma cells.
My M-protein at the time was around 3.8 but they still thought it might have been MGUS prior to the bone marrow analysis. Meanwhile, I had experienced pain in a shoulder and pain in a rib. I had attributed this to turning 40...but of course I now know they were lesions. Goes to show you X-rays are useless. I now know osteolytic lesions won't appear on an X-ray until 70% of the bone is destroyed. Two months after that X-ray, I had a PET scan that revealed well over 100 osteolytic lesions. Would have been nice to see better diagnostics from the get-go!
How many times were you referred before actually being diagnosed?
I was diagnosed on the first referral. The fact that I was diagnosed the way I was permitted me time to research all the different treatment options, and this was very important. I received a second opinion at City of Hope here in Los Angeles from Dr. Stephen Forman, who is the head of their transplant program. He is one of the warmest, brightest human beings I've ever met and is a wonderful doctor. I received a third opinion from Dr. Ken Anderson at Dana Farber in Boston, who is one of the leading novel agent doctors in the world. Notably, the bone marrow slides that I received from the initial lab were done incorrectly and indicated different abnormalities in the marrow than was actually the case -- although the amount of plasma cells was correct. And I don't think any of these three consults relied on anything more accurate than the old-fashioned (by now) FISH tests for deletion of Chromosome 13, which I now know is relatively meaningless as a marker. I received my fourth, and most important opinion, from Dr. Bart Barlogie, who quite literally has saved my life. More on him below. After these three formal consults, I also spoke with Dr. Brian Durie (at Cedars in LA, and also with the IMF), Dr. Robert Collins at Southwestern in Dallas, and spoke again with Dr. Ken Anderson as I was forming me "decision tree" of what to do. In addition, I spoke with Kathy Giusti of the MMRF, the chief medical officer of the MMRF, and three people that had been treated (two in Arkansas, one elsewhere). I had also scheduled calls with Dr. Heather Landau at Sloan Kettering, Dr. Morie Gertz at the MAYO Clinic in Minnesota and Dr. Sundar Jagganath at St. Vincent's in New York, however I decided to commence treatment before I spoke with any of them -- and I had already gotten their likely viewpoint expressed in the spectrum of others that I collected. I remark constantly that I was very fortunate to have the time to do this research. And I am also fortunate that my diagnosing Hematologist -- who is pretty conservative and favors a control-the-disease approach similar to MAYO -- recommended that I seek out all opinions, including Barlogie (who is the most aggressive) and Dr. Jim Berenson (who does not believe in transplants). I did not speak with Dr. Berenson and I'll leave it at that.
Where have you received treatment?
I began treatment at the University of Arkansas, Medical Sciences in February of 2009, under the direct care of Dr. Barlogie.
Explain your treatment history
2/09: induction cycle consisting of 4-day continuous administration of four chemo agents (Cisplatin, Adriamycin, Cyclophosphomide and Etoposide) concurrent with 4-day cycle of 40mg Dexamethasone, Velcade (1mg/meter squared) on days 1, 4, 7 and 11 and Thalidomide (200mg) daily (can't recall the precise cycle but I believe a week).
3/09: vertebroplasty on four broken vertebrae.
4/09: autologous stem cell transplant accompanied by fractionated high-dose melphalan (50mg/m2 per day over four consecutive days), with velcade on days 1, 4, 7 and 11, 40mg dexamethasone x 4 days, and thalidomide 200mg/day (again I believe for a week)
5/09: "bridging" therapy between transplants consisting of one four-day cycle of dex at 40mg/day, thalidomide at 100mg/day for about 10 days (I stopped because of a bad rash on my face)
5/09: second autologous stem cell transplant, same deal as the first
6/09: "bridging" therapy per the previous bridging therapy
7/09: consolidation cycle of chemotherapy, consisting of dose-reduced (75% of original dose) amounts of the four agents from induction, plus 40mg dex x 4 days, plus thalidomide 200mg x I believe a week.
9/09 and ongoing for the next three years: 1mg/m2 Velcade weekly, 20mg of dex weekly, 15mg of Revlimid days 1-21 with 7 days off after that.
10/09: One course of Zometa
1/10: Another course of Zometa, Velcade upped to 1.3mg/m2, Dex reduced to 12mg weekly.
Why did you or your doctor choose a specific treatment?
In the interest of not writing a book here, I will try to summarize briefly. Dr. Barlogie believes Multiple Myeloma is curable in approximately 55% of newly-diagnosed patients. He has developed his treatment, called Total Therapy, over a period of 20 years and has remarkable data supporting its success. He has seen more Myeloma patients than anyone in the world and has worked singularly on this disease for the 20 years that he has run the Myeloma Institute for Research and Therapy at UAMS. Prior to that, he was at MD Anderson working on Myeloma, and prior to that he worked at St. Jude with the people that developed Total Therapy for childhood leukemia, which was originally a deadly condition presumed to be without cure and which currently has a 90% cure rate. The concept of Total Therapy, in a nutshell, is to take every agent known to be effective against the disease and hammer it into submission by throwing it all at the disease in rapidfire fashion: the carpet-bombing, kitchen-sink approach. Thereafter, one keeps the body toxic for the cancer for a long enough period of time that all the cancerous cells -- including the progenitor cell that started the whole mess -- die. The first thing that is done at Arkansas is a bone marrow analysis that is compared with a very detailed regression model based on thousands of tissue samples, where over 80 genes are analyzed and based on this, and on the reaction of the bone marrow to a test dose of Melphalan and Velcade (which occurs before primary therapy began on the timeline above), they index patients into two risk categories. 85% of patients are low-risk, whereas 15% are high-risk. The outcomes for low-risk myeloma are decidedly better, and the cure fraction there is approximately 75%. Of the 85% of patients that are low-risk, approximately 60% achieve complete remission (in UAMS terms, this means normal bone marrow, no monoclonal protein under immunofixation, normal light chains). Of this 60% amount, 90% remain in complete remission five years later. Based on the "cure curves" observed over 20 years, after six years, the disease is all but certain not to return. Based on this, I built a decision tree. I could go for a control-the-disease approach (induction with VRD, RD, TD, etc. depending on the doctor, followed by a single ACST, and then see what happens) or I could try to cure it. My expected outcome for control was a recurrence in five years. My expected outcome for cure was 55% that I'd be cured, 45% that I'd have recurrence in five years. Treatment related mortality at my age was not a concern, but for older patients they should be aware that TRM in Arkansas is about 3%, versus about 2% for more conservative treatment. So then, I asked the other doctors (who are not aggressive) what the potential downsides of Total Therapy. One doctor said they would be concerned about the ability of bone marrow to sustain normal counts after the two transplants. I asked Barlogie and he said that that was not an issue, that they "never seen that" in over 1200 patients. Another doctor (my original hematologist, actually) was concerned about the long-term leukemic effects of the chemo drugs. Barlogie told me that in conjunction with Sloan Kettering, they studied this but after 17 years they never had an incidence of it so they stopped tracking it. Another doctor was concerned about the amount of Velcade used -- although Velcade has by now become routine therapy just about everywhere. After that, it was a pretty easy decision. The only real risk would be that I'd have used up most of the therapies that are effective, so if the Myeloma were to return, I would need new drugs at that time to beat it back down. Next generation Revlimid (Pomalidomide, now approved and in use) and next generation Velcade (Carfizomib, coming out in 2011 but available in trials today) are the answer to that question. So off to Arkansas I went.
What has been the side effects of the different treatments?
Very easy to tolerate, generally. No vomiting whatsoever. No mouthsores from the transplants. I did have constipation (my fault) and diarrhea (unavoidable). I lost my hair. I was exhausted for about three months. All things considered, pretty trivial compared with the side effect of DEATH which is the likely outcome from this disease in short form if not treated! In maintenance, I endure a bit of tiredness, trouble sleeping (helped with an Ambien) on Dex nights, leg cramps, and frequent colds. I'm dealing with the last two side effects, but they are manageable.
What has been the hardest thing about your MM journey?
I should have started treatment a month earlier. I felt something hurt like heck in my lower back in December. Dr. Forman told me it was probably just a ligament rolling over a bone -- nothing to worry about. Well...turns out it was a vertebrae being destroyed. I lost four of them to the cancer, and by the time I started treatment the calcium in my blood was hurting my kidneys, I had early-stage anemia, etc. I've lost about 1.5" of height as a result of vertebral compression and that is a pain. Honestly, that's been the hardest thing. I'm hoping to have back surgery in May to correct it.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
RESEARCH YOUR OPTIONS!!! DO ***NOT*** JUST GO TO ANY OLD DOCTOR. FIND ONE OF THE BEST IN THE COUNTRY, regardless of your opinion on the "cure versus control" debate.
If you are young, otherwise healthy, and newly diagnosed (and I say this with great love for you...) it is a huge mistake not to at least go to Arkansas for testing, and to consider it for treatment. They have this down better than anybody else. Interestingly, in a little over a year, others are catching on. More aggressive options are emerging (including the one Phil is doing in Michigan) with a focus on cure, not just control. City of Hope now does maintenance therapy, which they didn't do when I was diagnosed. Velcade is now routinely used in up-front therapy, which was almost heretical a year ago. Arkansas will be proven right. Of course, better yet will be the day when a much simpler, less toxic and less invasive alternative becomes available. I would love to see Bart put out of business!
How have you been able to stay positive and encouraged in your MM journey?
I never believed I was going to die from this. I believe in Bart's data. I took comfort in learning as much as I could, being my own advocate, asking questions, becoming an expert, making an informed decision, and ultimately putting my trust in a man with a vision backed up by data that I found resonant.
I reconciled myself that I was sick, and that I was going to have to go through a lot of horrible stuff that I wouldn't have to do if I was well, but I didn't want to die, and it was simply something I would have to do.
I focused singularly on my health -- I did not work at all during my treatment.
I visualized that every time I felt bad, I knew it was because the cancer was dying.
I also recognized that as a patient, all i could bring to my fight was positive energy. I would not be defeated. In your parlance, Phil, I was dedicated to DOMINATE! :)
After being diagnosed... What perspective was changed the most?
I try not to be bothered by the little things as much. You wake up breathing, everything else is icing!
I try not to be overly stressed -- I believe stress is what caused my immune system to be tweaked. I am still hard-charging, but I'm also trying my best to be happy with what I have to be happy with. :)
I know now the value of a simple phone call or email to a person to let them know they are thought of -- the littlest ones provided strength. If you are ever considering that it's awkward to send a note, or call, or whatever to a person battling cancer -- just do it. If they don't want to talk, they won't. But more often than not, simply knowing that they are thought of makes a difference!
Lastly, I believe it is defeatist to live every day like it is your last -- but I do believe you should live every day to the fullest.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
What MM sites or blogs had you found good information from after diagnosis?
There have been many more blogs that have arisen since the time of my diagnosis. At that time, there were only a few, and unfortunately even fewer with details of aggressive therapy (versus lots of alternative therapy, etc.) I am grateful to google, through which I found Ms. Lois Bertoni, who underwent treatment in Arkansas and has been cured of her Myeloma. I found her through a forum on a website which I believe is highly critical of Arkansas. Nonetheless, that got me my start.
At the risk of being self-serving (though my goal is to serve others with my blog) I have maintained a blog of my own at www.nvdmyeloma.blogspot.com. If nothing else, it is a faithful, day-to-day (more or less) painfully honest accounting in detail of my journey, from diagnosis through every day of treatment. For those considering a stem cell transplant, or considering Arkansas, I think it would provide tremendous value.
***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil