========================== Updated July 2009 ===================
3107 Stevens Cr. N. 303-665-5617
Erie, Co. 80516 firstname.lastname@example.org
I was diagnosed with amyloidosis Dec 2003. My story is very positive and I hope it will be encouraging to others. However, keep in mind that how one responds to treatment varies greatly with individuals.
I was born
Mary and I raised our family in
MUTLIPLE MYELOMA CANCER
During a routine annual physical in Dec, 2001 my primary care
physician observed that I had a high protein blood count and referred me to an
oncologist, Dr. Fleagle, of the Rocky Mountain Cancer
Center, (RMCC). His diagnosis was Multiple Myeloma, Phase 1. I was 63. Within
the next few months I decided to get second opinions since this was obviously a life changing event. My two were done at the Dana
Farber Cancer Institute in
I started Aredia, a biophosphonate, to strengthen my bones. I continued until Dec 2003. That was the only treatment I received. I continued to work full time and continued all outdoor activities. My mental outlook changed a lot. My wife and I joined a Leukemia and Lymphoma Society support group and started to live with the uncertainty of cancer. The bottom line is that my physical activity did not change much except I knew that I had an incurable cancer with no way of knowing when it might become more active and perhaps fatal.
In Aug, 2003, I had extreme fatigue after hiking up one of
the harder 14,000 foot peaks in
After returning to
After some research, I determined that Dr. Morie Gertz, at the Mayo Clinic in
Arrival At Mayo Clinic
My physical health was continuing to decline rapidly. My weight
dropped from 183 lbs. to 150 lbs. in two months . We
were delayed several weeks by IBM Blue Cross / Blue Shield who would not
initially approve a Stem Cell Transplant (SCT). Mary,
and I decided to go to Mayo without insurance approval and arrived in
My condition continued to deteriorate. I got much weaker on
the week end and, thanks
to my wife’s observations, she rushed me to St. Mary’s Hospital where I was in
heart failure and had severe kidney complications. The situation was obviously
very serious and, at the recommendation of Dr. Gertz, our two sons came to
My wife was told by a cardiologist, who was not familiar
with Amyloidosis, that I might have four to five months to live. We decided to
I gained about 20 pounds of edema shortly after being released from the hospital. For the next few months my wife wrapped my legs and ankles at night with compression bandages. In addition, I wore support hose during the day. Another condition worth mentioning, since it may save someone a real trauma and scare, is that my scrotum grew to about the size of a grapefruit for the first week or so. The good news is that I have not had dialysis since being in the hospital in 2004 and my edema is now under control. Due to my weakened health, Dr. Gertz recommended that I not consider a SCT. I will always think this turned out to be a very good decision.
During our visit to Mayo we stayed in the Gift-Of-Life-Transplant
I started chemotherapy February, 2004, for one day every three weeks. I stopped in September 2004. Dr. Gertz and Dr. Fleagle both felt that I needed a chemo vacation. I was beginning to need a blood transfusion with each chemo treatment. The chemo was medium Melphalan and Dexamethazone (Dex). The chemo slowed the progression of Amyloidosis but it did not put it into regression. My Kappa Free Light Chain (FLC) was still over 28.0.
I started on a Revlimid trail at Mayo Rochester in Feb,
2005. I go to Mayo every 12 weeks for a check up as part of the
trial. Between trips to Mayo I see Dr. Fleagle
and do my laboratory tests at the
Revlimid Trial General Information:
Trial: Revlimid CC-5013 Phase 2 Clinical Trial For Amyloidosis
Administered by: Mayo
Start: Feb, 2005
Completed: Still in progress Cycle 55
Research Coordinator: Ann Birgin
Research doctor: Dr. Angelia Dispensiere
Mayo primary doctor: Dr. Morie Gertz
RMCC doctor Dr. John Fleagle Rocky Mountain Cancer Center
Testing For Mayo Cycle (every 12 weeks)
The following test are done if specified by Dr. Gertz
Testing At RMCC - every four weeks between Mayo Clinic visits
· Chemical Panel (CMP)
The trial start was so shaky that it is worth repeating for others. The cycle protocol is 28 days and consists of 21 days of Revlimid, Dex four days every other week (referred to as weeks 1 and 3), and week four have neither Revlimid or Dex..
Cycle 1 protocol was 25 mg of revlimid and 40 mg of Dex. In a few days I erupted with a bad a rash that covered over 50% of my body and the cycle was stopped. Cycle 2 reduced the revlimid to 15 mg. The same rash happened again. Cycle 3 reduced the revlimid to 10 mg and the same rash happened again plus hives. (Note: As part of the trial the revlimid can only be reduced 3 times). Cycle 4 reduced the revlimid to 5 mg. No rash or hives occurred. Thankfully, I've been on 5 mg ever since that time.
The effects of Dex are worth repeating. During the last year my Dex has been decreased several times. As stated above, I started at 40mg each day for four days in week 1 and week 3. It is now 10 mg for 4 days in week 1 and none in week 3. Needless to say, I feel much better and do not have the crashes I had previously. I have talked to many others with similar, if not worse, experiences.
The most positive part is that I have been in remission for both Multiple Myeloma and Amyloidosis for over two years. My liver is normal. My heart has greatly improved but I still have restrictive cardiomyopathy and congestive heart failure. My Creatine varies from 1.4 to 1.7 (range is 0.8 to 1.3 mg/dl).
I receive a 90 mg Aredia IV quarterly for bone loss due to Multiple Myeloma. In addition to the Dex and Revlimid I take the following medications daily:
· Bumex 2 mg Kidneys
· Nexium 40 mg GI Track
· TeThryonize .075 mg Thyroid
· Gabapentin 600 mg Neuropathy
· Ambian CR 6.3 mg Sleep
· Fish Oil 100mg (300 mg Omega 3)
Bradycardia and the Accident
During May, 2007 I passed out several times and the doctor’s suspected a heart electrical problem associated with Amyloidosis. I had an electrocardiogram, an echocardiogram and wore a Holter heart monitor for 48 hours to help determine if there was as an electrical problem. None of the tests revealed a problem.
We travel a lot and I have no travel or drinking
restrictions except self imposed. My edema is under control which, according to
the doctors, is a sign that my heart has improved. I started working out with
weights again in January, 2006. I have a little fatigue, but overall, I feel
good and I try to walk during the week. In addition, I do a lot of yard work
and gardening. Memorial Day, 2009, I participated in the Bolder
Boulder 10K (6.2 mile) walk and averaged 3.6 miles per hour. We also have
a small home in
AMYLOIDOSIS SUPPORT GROUP
Fortunately there is an Amyloidosis Support Group (ASG) in
A FEW WORDS OF ADVICE
There are many things beyond a patients control, such as their caretaker, family support and good friends. All of these are very critical to one’s recovery. But there are some things that are within our control.
· Be positive
· Be proactive about one’s health
· If health allows, get involved with volunteer organizations
· Network with friends, fellow cancer patients, etc. “Don’t drop out.”
· If possible, plan at least one trip each year that breaks the routine