Recently, I met with my oncologist, Dr. M. His practice is located in Portland, OR. Each Thursday, however, he travels 60 miles up the Columbia River Gorge to Hood River. Here, he spends the day attending to cancer patients in our small community.
He commented that my disease continues to be in “complete remission.” His opinion is based on the ratio between my lambda and kappa free light chains. Usually, in addition to a CBC and Chemistry Panel, the SFLCA is the only test he orders to check on the status of my multiple myeloma. Once again, the ratio is normal.
So, I enjoy a drug-free remission fourteen months in duration since my autologous stem cell transplant in 2008. And, Dr. M extended the necessity for our regular appointment from two months to three. I will not see him again until January of 2010.
In many ways, I am an unremarkable patient with multiple myeloma. My age is consistent with the most prevalent group of individuals with this cancer. I have a monoclonal band in the lambda region of IGG, a common variety. I was diagnosed under typical circumstances: while undergoing a routine physical examination.
To recap my disease history, I became aware I had MM in December of 2007. My only symptom was anemia, detected when being turned away from Red Cross blood drives on several occasions dating back to 2006.
At diagnosis my IGG level was above 6400 mg/dL and my M-spike was 4.6 g/dL. These numbers reflected stage one multiple myeloma. My risk factors looked good: I had no bone involvement, my kidneys functioned well, and there were no cytogenetic abnormalities. I immediately started a combination oral drug therapy of thalidomide and dexamethasone.
Simultaneously, I requested a referral to the Seattle Cancer Care Alliance for a consultation on a stem cell transplant. After four months of the thal/dex, I opted to do the transplant sooner, rather than later. Peripheral neuropathy in my feet, a side effect of the thalidomide, troubled me.
In early 2008, thal/dex followed by a peripheral blood stem cell transplant was the standard of care. The transplant experience, though arduous, occurred without a hitch. The SCCA has numerous specialists in MM and perform hundreds of these procedures each year for a variety of blood cancers. I marveled at their competence. The near flawless execution of the complicated outpatient process impressed my wife and I. Obviously, I’ve responded well.
A remission, though, is not a cure. Another blogger said it best, and I paraphrase, “Stable disease does not mean it is dormant.” In August of this year, I underwent a skeletal survey. No overt evidence of lesions appeared. The radiologist did note subtle lucencies on my left humerus, the large bone of the upper arm. Of course, as soon as I left the doctor’s office, that arm began to bother me. Like a chipped tooth, I couldn’t leave it alone; the tongue of my imagination rubbed itself raw with worry.
Over the course of the next two months, I received my childhood vaccinations, traveled across country and back, and went about my usually active lifestyle. All the while, the left arm persisted in aching. The pain was two on a scale of ten. If I did not have MM and the suspicion of bone lesions from X-rays, I would have ignored the feelings, assuming they resulted from overuse.
This October, after Dr. M happily shared the results from my blood work, I mentioned the arm. He referred me to radiology for an MRI. There, I received a thorough imaging that included an injection of dye to definitively detect any lesions or tumors present on the bone or in the marrow.
Today, Dr. M’s medical assistant called with the results. The radiologist had commented that the MRI was … unremarkable.
In spite of my positive review of the SCCA and the strong response to the SCT, I must confess that we’ve arrived at this juncture operating by the seat of our pants. It worked out, but it was somewhat due to the luck of the innocent. I would not go so far as to suggest others should undertake a transplant ASAP, as I did. Now, in late 2009, there are other choices that have been added to the menu.
In just two short years, treatments for MM have progressed rapidly. Data from numerous clinical trials, of both manufactured drugs and natural supplements, bode well for the futures of those newly diagnosed. Options expand, as well, for patients with relapsed disease. The grim prognosis long associated with MM tips closer to manageable as opposed to incurable. Now that is remarkable.
8 thoughts on “Unremarkable”
Hello, I’m the newly diagnosed MM posting on funnybonemarrow.wordpress.com. Thanks for your comment on my first post. I must say that I am thoroughly impressed with your blog.
Would you be willing to share with me more details about your stem cell transplant? Things are moving very fast a Dana Farber. My four drug clinical trial is working very effectively and they are excited to have me on the transplant track early. It would be good to be in touch with to one who has first hand experience.
I am so happy for you, John! Wonderful news. I hope that you will continue to be…unremarkable for a very very VERY long time! 😀
How old were you when you were diagnosed with MM?
John, I am so happy to hear that you’re doing well. I follow your blog even tho I’ve been out of touch. Best to you and your family.
I’m so happy for the ‘unremarkable.’ Oh how I can relate and laughed at your worrying over your left arm. Isn’t it humorous sometimes how we worry? I enjoy your writings and also your notes of encouragement. Take care
This is wonderful news! A CR is the of every MMpatients wishlist. Congratulations!!
Great to hear you are doing so well!
Keep being unremarkable! It’s what all MM patients hope for 🙂