Hope for the Future - My Journey with Amyloidosis by Tony Iraci
My journey began in June 2002 when my dentist of 30 years noted significant tissue changes in and around my mouth. Both the dentist and hygienist noticed an increased thickening of tissue and an enlarged tongue since my last check-up. In fact, they had difficulty checking and cleaning my teeth during the oral exam. I was advised to see my primary care physician whom I subsequently did within days of the discovery. My doctor examined me and commented that all appeared well to him and would check it again on my next visit the following year.
At my next dental exam, the dentist again commented about the additional changes of tissue and advised this needed to be thoroughly checked out, as it could be a tumor or other medical issue. By this time two years had passed with still nothing found to be wrong. However, in October 2004, with letter in hand from the dentist, I went back to my doctor where an exhaustive series of tests would begin to determine what might be causing the tissue problems.
My Ear, Nose & Throat (ENT) doctor was then called into the case for his examination and he too noted changes since the last time he examined me. From there, X-rays, brain MRIs and other related tests were taken, all which showed inconclusive results, until a tissue biopsy was taken from the inside of my mouth.
The pathology report was clear; it was Primary Systemic Amyloidosis (AL). My ENT commented during the follow-up visit that "this is very serious", words which alarmed and shocked me. On my return home, I looked up Amyloidosis on the internet and from that point on, I knew this would be the greatest medical challenge of my life.
As more doctors were called into the case, my cardiologist of many years expressed concern about possible heart involvement since I also experienced increased fatigue and shortness of breath over the past few months. He then referred me to a specialist at Stanford Medical Center Cardiology Clinic as my best option.
In December 2004, I had the first of many clinic appointments at Stanford Medical Center. At the first appointment with the cardiologist, my wife Sharen and I were advised the disease was too advanced, I was not a candidate for an "experimental" stem cell transplant and that nothing could be done. This came as another shock to us. However, after further discussion, the doctor suggested I see a Stanford hematologist right away before any final conclusions were made.
Hope prevailed, and in the ensuing days and weeks ahead a series of tests were performed, including a heart biopsy. The results were clear, there was a "good" chance I could endure a stem cell transplant. Without it, I was given six months to live, another shock to be dealt with. For me, it was the best option to be able to buy some time.
Thus, in April 2005, during a beautiful spring day with flowers and buds blooming just outside my Stanford Hospital window, my treatment began with the extraction of blood cells in my bone marrow (apheresis) followed by high dose melphalan chemotherapy, then a stem cell transplant. Three weeks in the hospital was admittedly physically and emotionally challenging as one might expect, but as the days slowly moved forward the flowers and trees outside my window developed new spring colors. My prayer was that my life would be given more time, as my view of life and appreciation for each day took on a whole new meaning.
Now it is 2012, and 7 years has passed since the stem cell transplant. I would like to say that the disease is gone but for now there is stability, and for that I am most grateful. Physical challenges are still a reality but life continues with renewed hope for greater medical advancements in fighting this rare disease.
I am also forever grateful for the faith, hope, and prayers of countless friends and family, and of course, the greatest team of doctors, nurses, and medical staff at Stanford Hospital. Because of their sincere concern and determination in treating me, my life continues to this day. My list of outstanding doctors are too numerous to mention, but in particular, the Stanford Heart Center, Hematology, and Dermatology clinics have been phenomenal in the care and treatment of my disease. Without their genuine concern, my journey with Amyloidosis would be much more difficult. I have great hope and confidence in the Stanford Amyloid Center with research underway for new treatment options and perhaps some day a cure to alleviate this disease.
As I continue to be followed by various doctors at Stanford, I thought it might be helpful to list some of my symptoms:
- Facial tissue thickening
- Enlarged tongue
- Skin changes around eyes and face
- Bruising and skin rashes
- Neuropathy, numbness, tingling in arms and legs
- Fatigue, tiredness, shortness of breath
- Difficulty swallowing
2012 UPDATE: I'm currently on a monthly cycle of Dexamethason and Velcade to reduce the elevated protein light chains and lab results show a good response to the therapy. At the beginning of the second cycle my FREE LIGHT CHAIN (FLC'S) lab results have shown a change in the desired direction.
In conclusion, I would like to thank Stanford Amyloid Center for their tireless efforts and dedication in helping to find a cure. You are so appreciated! Because of your persistence and ongoing research, the future is bright for us and I am confident hope will prevail. It has been said that when life takes a turn it can make you bitter or better. During this season of my life, I've chosen to make it better.