My Timeline
A brief log of my diagnosis and treatment for

Chronic Myeloid Leukemia and GVHD post BMT

Robert F. Farmer
DOB 9/15/1940
DX'ed with CML 2/17/1993 (WBC 130k)
BMT at the Hutch 9/9/1993

Personal web site
http://oc.itgo.com/

Last updated 02/26/12

February 1993: diagnosed with CML PH+.
Enlarged spleen and WBC of +150K.

My four siblings were tested as possible donors.

May 1993: test results came in with my brother John as a perfect HLA match…very good luck.

September 1, 1993: entered the Hutch for BMT. 9/9/93 was day zero (age 53 minus 6 days). My inpatient treatment was nearly uneventful except for a bad reaction to my 1st GM-CSF injection on day "0" that was subsequently discontinued. I grafted easily and did very well...even flew fighter kites most every day of my last week as an inpatient from the nearby parking lot roofs. I suffered the normal mouth sores and stomach problems. This was not fun stuff but bearable taken one day at a time.

October 1, 1993: released to outpatient status. Patients normally live in apartments very near the Hutch until day 100 post BMT.

October 9, 1993: Acute GVHD (#2 on scale of 4) diagnosed at about 30 days from day zero. Treatment cyclosporine (200 to 475 ml 2 x day… became toxic several times) on alternating days with Prednisone (40 mg a day)

I received several blood infusions through Dec 93.

November 1993: transferred to the care of my GHC oncologist by the Hutch.

December 1993: during Christmas holidays (at end of my first prednisone taper), I started to have severe stomach problems. It was a difficult time to get medical care from my HMO because my oncologist was on vacation. Suspecting relapsing GVHD, I decided to go back on prednisone on my own and call my doctor after the New Year. This was big mistake. I should have called the Hutch Long-term-follow-up immediately when my problems started. In addition, my HMO had a 1-800 number that I could have called. ADVISE - ALWAYS CONTACT YOUR LONG-TERM-FOLLOW-UP TEAM (in my case the Hutch) IF YOU DON'T FEEL HELP IS AVAILABLE FROM YOUR PRIMARY HEALTH CARE SYSTEM.

January 1994: at my first office visit to my oncologist after the New Year, I explained my symptoms and why I put myself back on 20 mg/day of prednisone instead of chasing down medical care just before New Years weekend.  He ordered an endoscope of my gut. I was sick and confused during this time and didn't know the results until weeks later. During the rest of the January, I continued to have problems and made several office visits. This period of time was the most difficult of my post BMT therapy.  Click here to read my doctor's medical report of January 24, 1994. I was eventually diagnosed with chronic GVHD. Treatment lasted until April 1996. 

February 1994: hospitalized for one week for tests and IV morphine. I was very sick with gut pains. For the first time, I felt like I was going to die. After many tests and talk about surgery to check out my gut it was determined that, I had GVHD from the pathologist report of the GI endoscopy done 4 weeks earlier. My cyclosporine and prednisone dose was increased. In addition, I was put on monthly IV IgG. 

April 1994: Retired on a disability from Navy Yard 4/7/94… too weak and sick to work.

December 1994: at the end of my second prednisone taper, I had another GVHD attack but not as serious as in February. GVHD was detected via liver function tests. At the recommendation of the Hutch, I was put on another cyclosporine and prednisone treatment program to last for another year. That was tough to repeat. I was told by the Hutch long-term-follow-up staff that it was their experience that shorter less intense programs were not as successful for patients that had relapsed twice already.

May 1995: caught pneumonia, very sick for a week but not hospitalized. I spent the whole week as an outpatient getting IV’s. I was very glad not to be hospitalized.

September 1995: off IgG IV’s

April 1996: end of immune suppressant drug taper, finally beat the GVHD. My oncologist tapered me off prednisone and then cyclosporine very slowly. I had many body and bone pains during this period. It was a difficult time.

Summer 1996: I finally got rid of major body and bone pains from the prednisone withdrawal or BMT treatment. Still have some light tingling in feet and hands. Also my shakiness (hands) became less disabling.

August 1996: climbed a 14,265-ft mountain in Colorado. Not too big of a deal since I started at 11,000 ft. but I was one of only seven people of a group of 50 healthy people that made it to the summit.

September 1996: went hang gliding for first time since diagnoses. 90 minute soaring flight to 2000 ft AGL with hawks, eagles and a flock of geese as I landed at the lake into the sunset…a flight I will always remember. I was greeted by many old and young hang gliding friends in the landing area…wonderful thrill.

October 1996: bone marrow biopsy PCR negative.

December 1996: developed a bad case of frozen shoulder. Unfrozen after about two months of physical therapy.

February 1997: first normal blood work in every way since diagnoses. No about out of spec hematology/chemistry tests or nasty notes like slight polychromasia and macrocltosis, what ever they mean.

March 1997: skied for first time in since diagnoses.

September 1997: Tested PCR+ in blood

November 1997: BMB test results were PCR- in marrow and + in blood. Marrow was clean for all tests. The Hutch does not think I have relapsed.

January 1998: skied 2 days in a row. I was very please to be strong enough to put so many hours on the slopes and not be exhausted.

February - March 1998: more skiing

May - June 1998: more hang gliding and good times

July 1998: travel to California to a family wedding…wonderful time and second honeymoon after 35 years of marriage.

August 1998: Returned to work as a part time computer technician at Olympic College. The last time I worked was in August of 1993, just before my transplant. I retired on a disability annuity from my job of over 33 yrs as an electronics and engineering technician from Puget Sound Naval Shipyard in April 1994.

September 1998: At my 5 yr checkup I tested PCR+ in both marrow and blood for first time. Also lost 3 out of 20 y chromosomes.

The Hutch still does not think I have relapsed.

May 1999: Sinus surgery. My left sinus has been a problem most of my life.

September 1999: At my 6 yr checkup I tested PCR+ in both marrow and blood for the second time. Also lost 3 more male chromosomes to 6 out of 20 y chromosomes.

June 2000: Laid off from my job at as a computer technician at Olympic College. I will take the summer off and reconsider looking for work in the Fall.

August 2000: Dug my old sail boards out of the shed and went sailing with my family for the 1st time in 7 years.

Sept 2000: 7 yr checkup same as 6 yr except I lost more y-chromosomes.  18 out of 50 tested.

Fall 2000: After not working since June, I decided work was an unhealthy activity and to practice sleeping in and doing more useful things like surviving each day without cancer. J

Spring 2001: I continue to have chronic sinus problems. I found I was not using my nasal spray often enough to control nasal/sinus  inflammation. Even a little bit of inflammation can cause severe sinus pains. When I used Flonase or Nasacort 2 sprays in each nostril twice a day I did much better. I also take Allegra day time and chlorpheniramine night time during the allergy season.

August 2001: Number 1 and 2 sons, Dan and David, are both getting married this year. Dave and Lynn on Aug 4th and Dan and Michele on Dec 29th. All our children are arriving for the wedding of Dave and Lynn. Dan from Ecuador with fiancÚ Michele , Belinda from Poulsbo, Cathy lives with us. Life is still good. Not sure about sons Dan and David. J

October 2001: At my 8 year checkup I tested PCR negative in blood for the first time since September 1997.

December 2001: Attended wedding of Number one son, Dan, in Quito Ecuador. Glamorous wedding and great trip...lots of fun.

January - May 2002: Major dental work.  2 root canals, 3 crowns and $5000 poorer.  These teeth were possibly related to my chronic sinus problems. I highly recommend Dr. John West of the Center for Endodontics in Tacoma, WA.

February 2002: Slightly bad news. My BCR-ABL RT-PCR test of October 2001 blood sample was redone. 2 out of 5 assays test positive for  minimal blood involvement of CML.  Click here to read the report.  A new test from a new blood sample is in process. 

June 2002: Per phone call from Dr. Radich, the qPCR test was positive on the very last copy. I have very minimal residual disease (MRD).

November 2002:  BCR-ABL RT-PCR  positive. 

May 2003: Carol and I celebrated our 40th anniversary on an Alaska cruise out of Seattle.

November 2003: BCR-ABL RT-PCR  positive. 

February 2004: BCR-ABL RT-PCR  positive. 

July 2004: Carol and I traveled to Ecuador to visit our son and his family.

November 2004: BCR-ABL RT-PCR  positive. 

December 2005: Traveled to Ecuador. Visited my son and his family. I am also working on a my portfolio for future publication and books.

October 2006: BCR-ABL RT-PCR  negative. Hooray!!!

At 71, I feel lucky to do as well as I do. 

September 15, 2020: I celebrate my 80th birthday with 200+ descendents.

With only 4 grandkids,  I am not doing well with the descendant count.  Carol and I had 4 kids before we were 29. Come on kids, get going or it will soon be 2020 without 200 descendants. (Big grin) 


I welcome your comments and suggestions.
Bob Farmer - robert.farmer@comcast.net
Home Page:  http://oc.itgo.com 

Last Updated on 02/26/12