========================== Updated Oct  2007 ===================

3107 Stevens Cr. N.                                        303-665-5617                        

Erie, Co. 80516                                               maryandbart@comcast.net

Bart Howe

 

SUMMARY

 

Dec 2001        Multiple Myeloma Cancer History:

My multiple myeloma was diagnosed in Dec 2001 from a routine check up that revealed high protein in my blood count. I was 63 at the time. I was diagnosed as being in Phase 1. Within the next few months I decided to get second opinions since this was obviously a life changing event. My two opinions 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 Durie. Both are regarded as world class multiple myeloma specialist. They confirmed the initial diagnosis.

 

I started Aredia monthly and continued until Dec 2003. That was the only treatment I received. I continued to work full time and continued outdoor activities that were my main pastime. They included: gardening, scuba diving, bicycling, down hill skiing, cross country skiing and hiking. During the next two years I climbed several 14,000 peaks in preparation for a trip to Nepal planned for Oct 2003.

 

The bottom line is that my physical life did not change much except to know that I had an incurable cancer with no way to know when it might become more active and perhaps fatal. My mental outlook changed a lot. My wife, Mary, and I joined a Leukemia and Lymphoma support group and started to live with the uncertainty of cancer.

 

Dec 2003        Amyloidosis History

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 the worst storm I had ever experienced. In Oct 2003 I went to Nepal as planned. 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 hike even though we were no higher than 11,000 feet.

 

After returning to Colorado I continued to feel worse and immediately visited my oncologist. The initial thought was that I had picked up a “bug” in Nepal. My wife felt strongly otherwise. 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 higher rate of having amyloidosis than most. After much testing, a GI track biopsy diagnosed amyloidosis 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 took patients. I went to the Mayo Clinic in Jan 2004 for a second opinion.  Dr. Gertz confirmed the initial diagnosis and I had amyloidosis in the following organs: GI track, kidneys, liver, heart and spleen.

 

I began chemotherapy, medium melphalan and dexamethazone (Dex), in February 2004 and ended in September 2004. I had chemotherapy and Dex on day every three weeks.

 

 I am now in a cycle 34 of a Revlimid trail at the Mayo Clinic. I take Revlimid in conjunction with Dex. Most of my markers have greatly improved and life, in general, is good. My heart has slowly improved but I have restrictive cardiomyopathy and congestive heart failure as a result of the amyloidosis.

 

The Revlimid cost is covered by the trial. Other expenses for myself and my caregiver

(travel, meals, room, etc.) are tax deductible for me now with a lower income. In addition, Medicare and secondary insurance help defray some expenses.

 

Oct 2007         Key Measurements

Included are the measurements at the start of the Revlimid trial and the measurements from cycle 33 that I just completed. The ranges are from the Mayo Clinic.

 

Feb 2005         Sept 2007        Range

Hemoglobin                                          11.1*               11*                  13.5 to 17.5

Hematocrit                                           32.9*               32.9*               38.8 to 50.0

Creatinine                     Kidney             1.4*                 1.5*                 0.8 to 1.3

Predicted 24hr Prot.     Kidney             192*                236*                75 to 144

 BUN                           Kidney             29*                  31*                  8  to 24

Alkaline Phosphates      Liver                686*                92                    45 to 115

AST (GOT)                 Liver                83*                  92*                  8   to 48

Cong. Heart Failure      Heart                4*                    2*                    New York (rating 4 worst)

Troponin T,S                Heart                0.06*               <0.01               <0.03

NT-Pro BNP               Heart                3751*              1110*              <97

FLC Kappa                 Amy General    27.5*               .771                 0.33 to 1.94

FLC Lambda               Amy General    2.38                 0.878               0.57 to 2.63

FLC Ratio                    Amy General    11.6*               0.88                 0.26 to 1.65

Weight                         Gen Health       145                  160

* Out of range

 

 

Patient Outlook

I am very encouraged by the various treatments, especially the Revlimid.  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 weight again in January 2006. I have a little fatigue, but overall I feel good and I try to use either

a treadmill or walk during the week. The accident, see detail, has interfered with this but that is temporary.

 

The Revlimid appears to make me a little less cognizant. Dex adds to this. Dex also interrupts my sleep. After 4 days of Dex it appears to take about 2 days for the effects to leave my body. During this time I am more irritable and don’t feel as well.

 

As I’ve stated before, even though Revilimid is working well for me, on both multiple myeloma (MM) and amyloidosis (Amy), each person’s body reacts differently.

 

Gift-Of-Life Transplant House

During our visit to Mayo we stayed in the Gift-Of-Life-Transplant House in Rochester although I never received a SCT transplant. 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 Catholic, as many were not, but we were treated with great care and love. We try to visit The House when we go back for our every 12 week Revlimid trial review trail at the Mayo Clinic. I continue to see my oncologist in Boulder, Colorado at the Rocky Mountain Cancer Center (RMCC) on four week intervals between the Mayo Clinic visits for routine four week checkups and general concerns.

 

Amyloidosis Support Group

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

 

DETAIL

 

Jan 2004         Trip To Mayo Clinic at Rochester
My wife, Mary, and I decided to go to Mayo as quickly as possible. My physical health was starting to decline rapidly. My weight dropped from 183 lbs. to 150 lbs. in about two months. We were delayed several weeks by IBM Blue Cross / Blue Shield who would not initially approve a Stem Cell Transplant (SCT). We finally went to Mayo without their approval. With help from Mayo, the SCT was approved within a few days after our arrival.

 

My condition continued to decline very rapidly after arrival at the Mayo Clinic. 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. With dialysis, my kidneys restarted after three days and they have slowly improved. I gained about 40 pounds of edema shortly after being released from the hospital. 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...

 

Feb 2004         Start of Chemo                      

In Feb 2004 I started chemotherapy with medium Melplan IVs and Dex. I continued this until Sept 2003. At that time they determined that my body needed a rest so I discontinued the chemo. The Melphalan / Dex helped stabilize the amyloidsis. We initially went to the Mayo Clinic for a SCT but, due to my congestive heart failure, Dr. Gertz recommended that I not have a SCT. This turned out to be a very good decision for me.

Amyloidosis is often treated with organ transplants but since I had multiple myeloma I was not eligible for this.

 

Feb 2005         Revlimid Trial (Recommended by Dr. Morie Gertz)

Revlimid Trial Specifics

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

Administered by:                       Mayo Clinic at Rochester

Start:                                        Feb 2005

Completed:                               Still in progress

Research Coordinator:  Ann Birgin

Research doctor:                      Dr. Angelia Dispenzieri

Mayo primary doctor:               Dr. Morie Gertz

RMCC doctor                          Dr. John Fleagle

 

Revlimid Trial Results

All cycles are 28 days long with 21 days on and 7 days off. .

Cycle 1:            25mg Rev daily + 40 mg Dex for 2 sub-cycles of 4 days each

Stopped after 6 days due to rash covering over 50% of body

Cycle 2:            15 mg Rev daily + 40 mg Dex for 2 sub-cycles of 4 days each                                     Stopped after 8 days due to rash covering over 50% of body.

Cycle 3:            10 mg Rev daily + 40 mg Dex for 2 sub-cycles of 4 days each

                        Stopped after 10 days due to rash and hives covering over 50% of body.

Cycle 4:            5  mg Rev daily + 40 mg Dex for 2 sub-cycles of 4 days each

                        Completed full cycle with only minor rash and very little edema. Success!!

Cycles 5-32     Same as Cycle 4

Cycle 33 – Present       Dex amount was changed to 20 mg.

 

Medicines taken during trial

Nexium                        40mg                Daily; for upset stomach

Ambian                        5 mg                 Daily; to help sleep

Magnesium Ox 400mg              2 per day if cramps persist at night

Bumex                          2 mg                 1 per day

Lemothyroxine              .05mg               1 per day – started 6/3/05 for thyroid

Aredia                          90 mg               Every 3 months; for bone loss from Myeloma

Aranesp                       200 mcg           For energy. Medicare approves if hemoglobin <12 or hematocrit < 32

 

Required Testing For RMCC Cycle (every four weeks between Mayo Clinic visits)

Results from the following are sent to the Mayo Clinic:

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

 

Required Testing For Mayo Cycle (every 12 weeks)

Results from the following are sent to the RMCC:

  • Chemical Panel (CMP)
  • Complete Blood Count (CBC)
  • Free Light Chain Assay  (FLC) – for amyloidosis
  • 24 Hour Urine Test – for kidneys  
  • Electrocardiogram - for heart evaluation
  • Echocardiogram for heart evaluation – for heart evaluation
  • Liver Scan for liver evaluation – for liver

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

 

June 2007       Bradycardia And The Accident

 

During May 2007 I passed out several times and the doctor’s suspected a heart problem since amyloidosis can often lead to heart electrical problems. I had an electrocardiogram, an echocardiogram and wore a Holter heart monitor for 48 hours to help determine if there was such as a problem.  None of the test revealed the problem.

 

On June 3, 2007 I was on a ladder and fell (very dumb) and hit the garage floor. I suffered three compression fractures (tibia and fibula) in my left ankle and a break in the right calcaneus (heel bone). During the examination they discovered my heart rate was falling to the mid-thirties. This condition, called Bardycardia, is when the heart rate falls below 60.  Following is the detail:

 

6/03/07            I initially went to Boulder Community Hospital (BCH) urgent care. My big mistake was not to call 911 (the male thing). After some analysis and release, I passed out again as they tried to load me into our car. A decision was made to transport me, via ambulance, to the BCH ICU.

6/05/07            Surgery on both feet

6/06/07            Pacemaker installed

6/08/08            Pacemaker re-installed. The lead in the left atrium fell out. It was perhaps due to amyloidosis in the heart tissue.

6/11/07            Moved to telemetry floor

6/14/07            Moved to therapy floor

6/21/07            Dismissed from hospital

8/06/07            Pace maker re-installed. The lead fell out again. The surgeon used a screw tip technology instead of hook. The technology is older but more secure. I was in a wheel chair for six weeks and on a walking scooter for about a month.

8/15/07            I started walking again with assistance of a boot. I discarded the boot after two weeks.

9/18/07            I went to the Mayo Clinic as a routine part of the Revlimid. Referring to the summary, all of the markers are improved or without significant change.

9/24/07            I was released by the surgeon with no restrictions. Both ankles are healing at better than normal rate for a person my age. This was especially good news since I have multiple myeloma. The right foot has a significant problem with planter faciatias but is improving due to therapy. It’s been what we call, “The Summer From Hell”.