========================== Updated July 2009 ===================

3107 Stevens Cr. N. 303-665-5617

Erie, Co. 80516 maryandbart@comcast.net

Bart Howe

PREFACE

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.

PERSONAL BACKGROUND

I was born May 10, 1938 in a small town in Oklahoma (Healdton). Mary and I married in 1965 and have two sons, who are married, and a grandson. I graduated in 1966 from the University of Texas with a PhD in Electrical Engineering. I worked for IBM for 27 years and a rival company, Storage Technology, for 10 years. I retired in Dec 2003.

Mary and I raised our family in Boulder, Colorado and have lived here for over 40 years. I like to think that my family has been, and is, the primary focus of my life. Prior to amyloidosis, my personal hobbies included gardening, scuba diving, bicycling, down hill skiing, cross country skiing, hiking and climbing the 14, 000 foot peaks of Colorado. I climbed 27 of the 54 before my health failed.

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 Boston by Dr. Ken Anderson and at the Cedar Sinai Hospital in LA by Dr. Brian Durry. Both are regarded as world class multiple myeloma specialist. They confirmed the initial diagnosis. I would greatly encourage anyone to get a second opinion.

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.

AMYLOIDOSIS

Initial Analysis

In Aug, 2003, I had extreme fatigue after hiking up one of the harder 14,000 foot peaks in Colorado. I passed it off to getting a late start and being caught in a very bad storm. In Oct, 2003, I went to Nepal for a long planned trek. During this trip I began to have extreme fatigue. The doctor at Katmandu diagnosed it as anemia. To my amazement and disappointment I could not continue the second week of the trek even though we were on peaks no higher than 11,000 feet.

After returning to Colorado I continued to feel worse and immediately visited my oncologist, Dr Fleagle at the Rocky Mountain Cancer Center (RMCC). The initial analysis was that I had picked up a “bug” in Nepal. My wife felt otherwise because she had noticed that I was becoming weaker before leaving for Nepal. Amyloidosis was even mentioned but it was felt that I was too early in Multiple Myeloma, Stage 1, for this to be the case. As we found out, those with Multiple Myeloma have a much higher rate of having Primary Amyloidosis (AL) than most. After much testing, a GI track biopsy diagnosed AL in Dec, 2003.

After some research, I determined that Dr. Morie Gertz, at the Mayo Clinic in Rochester, Minnesota, was (and is) a top Amyloidosis and Multiple Myeloma research specialist that saw patients. I went to the Mayo Clinic in Jan, 2004 for a second opinion. Dr. Gertz confirmed the initial diagnosis. I had amyloidosis in the following organs: the GI track, kidneys, liver, heart and spleen. It is worth noting that Dr. Gertz and Dr. Fleagle have worked together as a team since I first started going to the Mayo Clinic.

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 Rochester, MN on Feb 14, 2003 to prepare for a Stem Cell Transplant (STC). With help from Dr. Gertz the SCT was approved within a few days after our arrival. I did several days of testing to preparer for the SCT.

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 Rochester. The situation slowly improved and with dialysis, my kidneys restarted after three days.

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 stay in Rochester and be treated by Dr. Gertz.

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 House in Rochester. We though we might be there a month but it turned out we were there four months before I recovered enough to return home. I can’t say enough good things about this place. There were people there for all kinds of transplants, some multiple. They were there from all backgrounds, religions, countries and economic levels. We were all in this together and the common bond was heartwarming. The Franciscan sisters from the Catholic church ran The House. I am not religious but we were treated with great care and respect. We try to visit The House when I go back for our 12 week check-ups.

Chemotherapy

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.

Revlimid Trail

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 Rocky Mountain Cancer Center in Boulder, Colorado. The results are sent to Mayo.

Revlimid Trial General Information:

Trial: Revlimid CC-5013 Phase 2 Clinical Trial For Amyloidosis

Administered by: Mayo Clinic at Rochester

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)

• Chemical Panel (CMP)
• Complete Blood Count (CBC)
• Free Light Chain Assay (FLC)
• 24 Hour Urine Test

• Electrocardiogram
• Echocardiogram
• Liver Scan – every other Mayo cycle starting July 2009 (previously done every cycle)

The following test are done if specified by Dr. Gertz

• Bone marrow biopsy to analyze multiple myeloma and amyloidosis
• Skeletal survey to analyze bone loss

Testing At RMCC - every four weeks between Mayo Clinic visits

· Chemical Panel (CMP)

• Complete Blood Count (CBC)
• Free Light Chain Assay (FLC) - for amyloidosis
• 24 Hour Urine test

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)

· Multi-vitamin

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.

On June 3, 2007 I was on a ladder (very dumb) and fell and hit the garage floor. I initially went to an urgent care facility and was transferred to Boulder Community Hospital (BCH) urgent care. My “big” mistake was not call calling 911 (the male thing). I suffered three compression fractures (tibia and fibula) in my left ankle and a break in the right calcareous (heel bone). During the examination they discovered that my heart beat was going to the low 30s and staying there. This condition is call Bradycardia. I had surgery on both feet and had a pace maker installed. I had to have the lead installed three times in my left ventricle. A record for BCH. Could it be heart damage from the amyloidosis? No conclusion. I was in the hospital for 23 days, spent about 6 weeks in a wheel chair, and several weeks with a scooter. It was the “The Summer From Hell”. Moral of the story, stay off ladders.

CURRENT SITUATION

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 Breckenridge, Colorado at altitude 9600 feet. I am able to continue fairly intense physical activity there. I am very fortunate and humbled and know that I am more fortunate than most.

AMYLOIDOSIS SUPPORT GROUP

Fortunately there is an Amyloidosis Support Group (ASG) in Denver. We meet about twice a year to hear speakers, discuss our experiences and exchange ideas. The speakers are experts in amyloidosis. ASG information is located at www.amyloidosissupport.com. The best contact for support group information is Muriel Finkel at muriel@finkelsupply.com.

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