Arnie’s Rebounding World: A Journey From Diagnosis To Relapse And Beyond
In March of 2006, I was 47 years old and thought I was on top of my game. I had a busy, thriving Ear, Nose, and Throat medical practice and a great wife and two kids, one in 8th grade and one in 5th. I was compulsively physically active, with a rigorous workout schedule. But something was not right.
Every Saturday morning, I worked out with a group of friends and began to notice that I was becoming short of breath more easily. Friends who I could usually outrun were blowing past me. I had daily headaches, rib and shoulder pain, but then I thought, who at my age and life style didn’t.
Not really very concerned, I thought maybe I was anemic and as a busy physician I ordered blood work on myself. The results came back with a mildly low red blood cell count and very high total protein. The results meant nothing to me, but I called a friend who was a hematologist/oncologist to run it by him. His voice was not reassuring, “We need to do some more tests.”
Within two days the results were back. He called on the phone, “Are you sitting down? We need to do a bone marrow biopsy, but the results look like multiple myeloma.”
That’s not possible, I thought. My only recollection of multiple myeloma from medical school was that it was a disease of old people. People like me don’t get cancer.
Within a few days, I was immersed in the world of multiple myeloma. My oncologist friend recommended going to the University of Arkansas to see Dr. Bart Barlogie. After a weeklong evaluation in Arkansas, I was diagnosed with Stage 3 multiple myeloma. I learned about the Arkansas Total Therapy 3 protocol with an aggressive up-front regimen of almost all of the drugs known to be active against myeloma followed by tandem (back to back) stem cell transplants and then two to three years of maintenance therapy.
I was overwhelmed. I lived in Tampa, Florida. How could I live in Arkansas for weeks at a time for treatment, with a young family at home and little if any support in Arkansas? How depressing would that be? How good could that be for my mental health and recovery?
In Tampa, we have Moffitt, a well-known cancer center in its own right. What was their treatment regimen? I flew back home and met with Dr. Melissa Alsina, the myeloma specialist at Moffitt.
It became clear that there were really two very different philosophies to the management of myeloma. The Moffitt approach (along with many others) was more of a measured, stepwise approach with a less aggressive upfront regimen and a single stem cell transplant holding the cells for a second transplant in reserve. Some of the active drugs were held in reserve to be used as they become needed down the road rather than given up front.
Which was better? Who was right? Both sides were passionate about their approach. Both sides had data to support their views. There was no clear-cut answer.
While treatment options have changed, expanded, and evolved over the last few years, this remains one of the earliest dilemmas facing the newly diagnosed myeloma patient.
For me, the decision came down to the ability to stay at home and be treated surrounded by family and their support. I was also more comfortable with the philosophy of a less aggressive approach and not using up all available bullets at once, knowing they might be needed later.
Thankfully so, because it turned out I needed those bullets much sooner than I had originally expected.
In this monthly column, I will continue outlining my journey with multiple myeloma, from treatment when I was newly diagnosed to treating and living with multiple relapses.
Arnold Goodman 52 lives in Tampa, Florida. He was diagnosed with multiple myeloma in 2006. He has been living with relapsed/refractory disease and has been treated with multiple drug regimens. He was a practicing Ear, Nose, and Throat physician in Tampa for 20 years before the demands of his disease forced retirement last year. Arnie is married to Merle and has two children, Sam, a 19-year-old freshman in college, and Dori, a 15-year-old freshman in high school. Arnie still tries to stay physically active and loves to swim, kayak, cycle, and read.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Dr. Goodman:
I live in the Tampa area also and was diagnosed in July 2009. We have 3 support groups in this area. Two are located in Hernando county. One is myeloma only and meets on the 3rd Wed night and the other is sponsored by LLS and meets on the 4th Wed night. There is also one in Clearwater which meets at Mease Hospital on the 4th Sat morning. Let me know if you need more information.
Richard Blustein
Blustein22@aol.com
Dr. Goodman...Asking whether a treatment choice is good for your mental health and recovery is often under-rated when considering the big decisions you write about. Thank you for mentioning that...Pat
Dr Goodman, at the beginning IT is so overwhelming and I'm not yet in this "new normal" I often hear about. I'm newly diagnosed (6 month), not yet 40 years old with small kids. So I will follow your story closely to learn something. Would be very interesting to know, if your "myeloma docs" worked with a genetic markup and customized your therapy. How about the psychological side of the disease. I do not read much about it. And what bullits are used today to make your myeloma stable. Would be great, if you have some tips for us newly diagnosed - to get back to a peaceful life. Thank you for your column! Peter
Dear Dr. Goodman, so timely that you should talk about your decision process and dealing with the potential of being far from home for treatment, and deciding not to. I was just writing about this on my caregiver blog. I think people should at least get the differing views regardless of the perceived hardships of treating far from home. Once they do that, making their decision with more information vs. limited information helps to be more "at cause" regarding their treatment choice. Great article!
Best you you and your family.
Dr Goodman Your article once again reminded me how lucky I Am. I reside in Fl but my daughter and son along with their failies live in Atlanta. Because of this I was able to get the treatment I wanted in Atl It has been really great I am now in remission and will soon be heading back to Fl. I will return to Atl on a monthly schedule for maintenance. Besides helping to fight MM my children and me are now closer to each then we have ever been. Good luck to all
Dear Dr. Goodman- thank you for sharing your MM journey. Our stories are somewhat similar. I was a practicing clinical psychologist and loved my work. I had to retire last December due to the burden of the disease and treatments. I am curious about the treatments you have had and/or are considering. I had a autologous stem cell transplant at Stanford in 2007 after dx in 2006. I was in CR for almost 2 years and then the MM came back. I have been on 4 D-PACE treatments that brought my m spike down from 5.3 to 3.5 and then the treatment plateaued. I am hoping to start on pomalidomide and dex soon. The aggressive chemo tx resulted in 10 hospital visits in 4 months. I am hoping that the new tx will be effective but not as intense. I admire your spirit and ability to be so active physically and make wise health choices. I live in Northern California near Monterey. My wife, family and support system is great and my faith helps me get through this MM journey. I am still getting used to retirement. Thank you for your courage and bringing out the emotional side of this illness and how it impacts the entire family system.My prayers are with you and your family.I pray that one day we will have a cure for this disease. It seems to be attacking people at younger ages. Keep up the fight. You are inspirational.
God bless,
Ira
Dear Dr. Goodman -- I would be interested in the doctor's perspective (your own) about dealing with an incurable disease. How do you find the medical profession and its empathy toward treating one of its own?
How do you, as a doctor, engage personally and mentally in this experience, and can you offer anything to your colleagues? Best of luck in what seems a roll of the dice in treatment. Suzanne
Wow! Thank you so much for your comments. As a new writer of a column I had no idea what to expect. Putting my myeloma experience as a patient and physician on paper is something new to me. Some of the issues raised in this column have clearly struck a cord. I agree completely that factoring in your mental health is extremely important in deciding where to get treated. Few things are as important as a positive mental attitude during treatment. I least for me that meant staying close to home, surrounded by family and friends as well as a comfort level with the treatment approach. Clearly the choices and reasons for the decision will be different for different people. I believe that there is at this point probably no right or wrong answer.
The question came up regarding genetic testing and customization of treatment. At the time of my diagnosis and even now genetic testing is done to determine if patients have "high risk" disease such as chromosome 13 deletion. At the time of my diagnosis this was more of prognostic significance. Now with some of the newer drugs such as velcade this may impact treatment decisions. However despite some of the hype in the media and the work on mapping the myeloma genome we are not yet at the stage of truly customized therapy.
In upcoming columns I will continue to outline my myeloma treatments from initial therapy to relapses and my experiences with the different treatments. I will try to address the issues of decision making at different junctures both from my perspective as patient and physician. Will try to address the emotional side as well. I fact you guys have given me some great ideas. Thanks
Dear Dr. Goodman -
Thank you for sharing your experiences with us. I was diagnosed with MM just over four months ago, and it is a steep learning curve with important decisions to be made. I, too, got a second opinion and decided to go to a facility which also has excellent care but is closer to friends and family. As you said, it is overwhelming, but once I had more information, a decision made, and a plan in place, my anxiety level began to come down. I look forward to reading your column and hearing about your journey. I'm sure I will glean wisdom from you to guide me on mine as time passes.
Thanks again, Linda
Dr. Goodman, I was fascinated to read your first column. The fact that you are a doctor gives your decision making process great credibility. I was diagnosed in May 2007, had STC with very good response untill numbers drifted up after 28 months. Unable to tolerate Revlimid, I am currently at point of indecision concerning next treatment strategy. Waiting for Pomolidomide to be available is probably not practical, and velcade already caused significant peripheral neuropathy. For first time a second STC is being mentioned. So I wait with great expectation to hear how your relapses were dealt with and what your future outlook for treatment is. For myself the process of dealing with relapse has been a challenge to maintaining the positive, one day at a time, outlook I (for the most part) maintained during the first period of remission. Thanks for being willing to share the details of your experience. Joe
Joe,
I will write much more about this in the upcoming months, i have too have been through Revlimid and Velcade as well as trying pomolidimide. I just underwent a second stem cell transplant in December and everything went really well. Definitely a reasonable option at this point.
Thank you for sharing your story. I find it very theraputic to read that my family is not alone in this fight. My dad was diagnosed in September 2010 with Stage IIIb MM at age 55. It's like our family was hit by a freight train. He just finished intial therapy and is in complete response (God is good). We are now headed for the stem cell transplant. He has had horrible peripheral neuropathy from Velcade and it hasn't decreased in the three weeks he's been off. But, we know that we have been blessed and don't take it for granted. We certainly want to offer support and prayer for all those going through this life altering journey.
Wow,
So interesting reading these various comments made by all at varying stages of MM. I at 55 was just diagnosed with MM 6 months ago and have been doing the regimine of the three seemingly most popular/effective drugs > Velcade, Revlimid, and Dexamethasone. I will do two more cycles and am thinking of the SCT after that.
But am not sure that is the route to go - there is so much unknowns with this type of cancer at this time. To go through that, then perhaps the outcome is no better than staying on the drug therapy.
So confusing trying to decide the right course of action at this time. All the comments on this site are interesting and helpful, along with other articles on MM my very supportive girl friend has forwarded on to me.
Thank you all for shedding a little more insite about decision making and your viewpoints on this disease. I am being treated at the NH Dana Farber clinic in Londonderry, but may get a second viewpoint from a clinic that specializes in MM to make the most informed decision at this time.
As many of you have said - maintaining a positive attitude along with the support of family and friends is key.
Thanks again - Jim
I too underwent the Tandem Stem Cell Transplant route. (I am still amazed I was my own donor). After 8 years, my numbers have just started to drift up. My Doctor is about to start me on the Revlimid. Thanks for the interesting comments. I suffer mild neuropathy, but I considered that a small price to pay for survival.
HI Arnie
I've found you here on your site. Keep fighting the fight! I think about our days in residency often. Find me on the web or facebook to catch up!! Lee
Dr. Goodman -
I found your journey from diagnosis and beyond article very helpful. The articles about individual experiences are helpful to those of us newly diagnosed facing the disease.
I previously had invasive breast cancer Stage III, a bilateral mastectomy, chemo and have been in remission for breast cancer for 15 years. When I started having symptoms, I assumed my breast cancer was out of remission. It was a different type cancer - MM! During my last go around with breast cancer, I found that the more knowledge you have about your condition, the more you can assist your doctor.
Thanks for your article!
Nancy D
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page