Myeloma Rocket Scientist: Early Treatment
After my myeloma diagnosis in early March 2006, I received induction therapy with thalidomide (Thalomid) and dexamethasone (Decadron), which lasted for eight months. At the time, this treatment regimen had just been approved for newly diagnosed myeloma patients. As I’m sure you all know, the regimen is now essentially obsolete, which is a good measure of the recent progress in myeloma treatment!
After diagnosis, I took a term of sick leave from my university, and spent virtually my whole time at home. The first six weeks were spent basically resting. I remember that my project one day was to go from lying in my pajamas on the sofa in the living room to lying dressed on the sofa in the adjoining family room. I just managed it. My wife banned me from going up and down stairs more than once per day, as I got so tired and out of breath. Our boys, then aged 12 and 9, did not appear to notice that anything was amiss – maybe I just seemed lazy!
For an occasional excursion, I would slowly walk down our driveway to the mailbox, which was a big deal, since I had no energy and the muscles in my legs seemed to have disappeared. I developed a walk reminiscent of Douglas Bader, the British World War II fighter pilot who had lost both legs in a crash and walked by using his torso to throw his artificial legs forward at each step.
I had assumed that a good indicator that my treatment was working would be a reversal in my weight loss. This did not happen right away. In fact, my weight dropped a bit further over the next month or so, which really worried me. However, it did eventually turn around.
The treatment also did a good job of driving down my M-spike, which first became undetectable in September 2006. My oncologist said that I had “responsive disease”. At that point, he also said that I might live for another 20 years or so, which was considerably better than my original pessimistic expectation of maybe three years.
On the more negative side, the dex eventually gave me cataracts and reduced my bone density to that of an average 90-year-old man. There are always tradeoffs when dealing with strong drugs.
By early June, I was able to go for short walks around our neighborhood – at first slowly, but finally one day at my usual brisk speed. It felt like flying!
I was able to work on a grant that summer and then teach a course in the autumn before taking another term off to have an autologous stem cell transplant in January 2007. The transplant put me in complete remission, apart from a mysterious three-month period in the summer of 2007 during which I had a small M-spike. This really concerned me at the time, as I was afraid that the transplant “didn’t take.” However, the M-spike disappeared at the end of the summer. I did not have to take any myeloma treatment – apart from Zometa (zoledronic acid) to strengthen my bones – until January 2014. This was a far better outcome from the transplant than I had expected.
About a year after my transplant, we moved to Maryland so that I could start work at NASA on a satellite mission that was due to launch in seven years. I definitely had days when I was afraid that I would not make it that long. However, the mission launched on March 12 of this year, and I am still working on it. I really consider myself lucky that I am able to work at something that is so interesting, and so good for taking my mind off health issues.
So, why have I decided to write this column?
One reason is that I thought it might be good for people to hear from someone who has been fortunate enough to have lived a very close to normal life for over nine years (so far) after a diagnosis of myeloma. I realize that luck plays a key role, of course, when dealing with a disease that has as many variations as multiple myeloma. Nevertheless, I hope that I may perhaps give other patients encouragement by sharing my perspectives and experiences.
Another reason for writing, though, is that it gives me the opportunity to converse with a community of people who understand what living with myeloma is really like.
I have already learned a lot from the current columnists. For example, they make it clear that it’s normal not to “get over” having myeloma. I probably think about myeloma at some point nearly every day, and I was starting to feel a bit guilty about that. The point is, I suppose, how really different it is to have an incurable disease that you know may/will get you someday, compared to having had something, and then being cured of it.
I am hoping that writing a column will allow me to interact even more with the Myeloma Beacon community.
Trevor Williams is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Wow, Trevor, we have followed much the same course. Diagnosed in August 2005, went on same thalidomide / dex treatment as you, then had two auto transplants (I was part of a clinical study which required a 2nd transplant 100 days after first). Then on Zometa for awhile afterwards. And yes, I'm still in complete remission too! And yes, it is still hard to go a day without still thinking about it, though I do my best to resume my normal, if not even better, life. I'm down to 2 times a year oncology appointments, though I keep pushing doc to lengthen to one time a year, but I still haven't won that argument.
Enjoyed your article. Here's to us old timers (as far as years since diagnosis is concerned)!
I was diagnosed June 2011, Stage 3. Stem cell transplant December 2011. Due to slow blood recovery, maintenance was not an available option. My numbers started moving out of range February of this year. November 2015, I started back on Velcade Like you, a day did not go by that I did not have to push out the thought of MM. It was like waiting for the other shoe to drop. Now it has dropped and I can deal with the next phase. I have options.
Thank you for bringing your story to the Beacon. Those of us waiting for that shoe will know that the mental fight is sometimes not any easier than dealing with the chemical fight. It's all about the attitude.
Thank you for writing this column. I received the aggressive induction chemo and I could relate to the side effects. Also how it is to think about multiple myeloma. Keep writing, you do encourage me and others.
Hi Trevor
Thank you so much for sharing your story. I truly appreciate reading about the experiences of others with multiple myeloma. Congratulations on defying the odds and living a "normal" life for nine years. For those of us who are early in our multiple myeloma journey (16 months), stories like yours really gives us hope. Keep sharing your experiences and I will look forward to reading your future columns.
Hi Trevor,
Thanks for sharing your positive experience. Really heartening and encouraging! I wish the very best for you in the future.
God bless you,
Dilip
Thank you so much, Trevor, for writing this column. Like others, it is so encouraging to read about a "long-timer" living with myleoma and doing normal activities/working, etc. Since my 2013 diagnosis, chemo, then acst, and now velcade maintenance, I am doing very well in remission. Your comments will help me to continue to think "onward" and with a positive attitude.
Lynda, you’re right, our treatments sound very similar. I also almost enrolled in a clinical trial involving tandem transplants, but a random subset of the second transplants were allogeneic, and the risks involved made me decide against participating. Congratulations on reaching ten years from diagnosis! I still have 4 months to go to reach that milestone.
Thanks to everyone for the feedback on the column. I really appreciate it. We all have experiences that differ very much in the details, but in the essentials are extremely similar. It feels like joining a community to be able to converse like this. Maureen, thanks also for your columns. They provide a really good insight into the myeloma experience.
My husband was just diagnosed October 4. We are getting so much info it is overwhelming. That being said, I truly enjoy reading the life stories and share them with my husband. They give us much hope and help us look to the future
Mary, I hope your husband is doing well. Diagnosis is definitely an overwhelming time. Not only are you dealing with a disease that you’ve probably never heard of before, but there are decisions about treatment options that have to be made quickly. Things do get a little less crazy after a while though. I’m glad to hear that you have found the column encouraging.
It is very encouraging to read your story. My dad was fortunate to survive one year and ten days from his diagnoses. It gives me peace of mind to know that there are many who live longer and that new treatments are coming online.
At a month into being diagnosed with multiple myeloma, I have still many questions, which were given to my oncologist. I am not at the point that I even have a good or bad prognosis. I have had 15 days radiation on my T7, which is the spot the myeloma attacked. Also taking dexamethasone daily and a monthly Zometa drip. Hope to have some firm reports next week at doctor visit.
These are interesting comments. I will add a few. I was diagnosed in June of 2004 with multiple myeloma and had a surgery immediately followed by radiation at T4. A stem cell therapy was offered in 2005 and another surgery in 2006 at the C spinal level, followed by more radiation. Then I did quite well on thalidomide until early 2013 when the multiple myeloma became active again. I had radiation at the base of my spine to relieve pain, followed by 8 months of chemotherapy with Velcade and cyclophosphamide, etc. I am now taking Revlimid for therapy. I am very happy to have survived 11 and a half years now and am enjoying a good quality of life at 71 years, even though I am careful about becoming overtired.
I apologize for not posting replies sooner than this. I really enjoy my job, but there are times when it definitely gets a little too hectic! The past week or so has been one of those times.
Heather, you are so correct that the new treatments have revolutionized the life of myeloma patients. Of course, the disease is so variable that not everyone has a good experience, but at least some do. I am very sorry for the loss of your father. Thank you for your kind words.
TheQuill: The early post-diagnosis period that you are going through is definitely a difficult transition. Did the doctor visit that you mentioned produce any additional information? The only point that I would make is that a prognosis is only a statistical prediction, and is particularly uncertain for a complex disease like myeloma. Even if someone is unlucky enough to be told that they have a “poor prognosis”, that is no guarantee that things will go badly. I wish you good luck with your treatment.
Gerald, it is very encouraging to hear of someone who has survived with myeloma for eleven and a half years! I’m glad that you are doing so well.
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