Larry Gard's Background

[larry gard]

The following recaps my experience to date realizing that each MDS case is different. Any misstatements or misrepresentations of the information, is due to my error and no others.

I am a male, age 77, retired in March 2003, married with 4 adult children, in general good health. An annual physical in Jan 2004 revealed that my WBC was low (3.5) so I was referred to a hematologist (Slobodan M. Stanisic, M.D.). On June 17, 2004 a bmb indicated tests were normal. He referred me to a rheumatologist in August 2004. All tests were normal so I resumed periodic follow up with my hematologist.

The WBC continued to drop, so a second bmb was performed in Dec 2005 revealing a diagnosis of low risk MDS and leukopenia (WBC of 1.4). It was suggested that Neupogen injections (a GCSF) be used as supportive treatment to boost WBC to ward off any serious infection that could be fatal (e.g., cough to pneumonia). Based on the bmb results, he advised that my blasts were less than 5 percent; the cytogenectics were normal; an IPSS scoring of 0.5; and under the WHO classification the specimern borders on refractory anemia with excess blasts (RAEB-1). The possibility of an early accelerated phase of this MDS cannot be ruled out.

As a conservative individual, I held off any treatment and obtained a second opinion on March 1, 2006 at the Cleveland Clinic by Mikkael A. Sekeres, M.D. His review and findings were based on the bmb specimens of Dec 2005 that I took with me from Cincinnati. His findings confirmed that I had MDS and his suggested treatment concurred with those of my hematologist. He determined that my disease falls into the WHO subtype of refractory anemia with multilineage dysplasia (RA-MD), under the older FAB classification, it would have been diagnosed as refractory anemia (RA) only. The bmb results demonstrated less than 5 percent of marrow cells as blasts. The IPSS score is 0.5 which puts me at an Intermediate-1 risk category. Given my lack of symptoms but significant leukopenia, Dr. Sekeres recommended the use of a GCSF as treatment at this time until the point when I may need further treatment based on the progression of the disease which may improve my blood counts.

Since I was interested in exploring alternative treatments that Dr. Azra Raza might suggest at the MDS Center at UMass Memorial Health Care, I arranged for an appointment with her for a 3rd opinion on June 19, 2006. A bmb conducted there revealed that my disease had progressed more rapidly than anticipated. Dr Raza found that the bone marrow results were consistent with the diagnosis of MDS with a FAB classification of refractory anemia with excess blasts (23 percent) in transformation and an IPSS score of High. According to the WHO classification she found that I had now transformed to AML. At this juncture, she would rather approach my disease as a high risk MDS rather than a frank AML.

Dr. Raza suggested a combination therapy with Vidaza and Thalidomide. My hematologist was receptive to Dr. Raza's recommended treatment (i.e., combination therapy of Vidaza and Thanlidomide - 28 day cycle with 5 days of low dose Vidaza injections (75mg/kg) and Thalidomide tablets starting at 50mg/day and increasing to 100mg. I asked that it be followed. The treatment is conveniently given in Cincinnati, my home town, and data is forwarded to Dr. Raza for her review. [The Vidaza injections are givren in my arms.]

My first 28 day cycle began on July 17, 2006 with counts listed below under "Periodic Counts." To date, I have not had any significant adverse effects of the medication other that nausea the first day I started treatment on July 17th. I think that was due to eating too much later in the day after skipping lunch! Some swelling in my legs is controlled with elastic stockings.

My 6th treatment cycle began on Dec 4, 2006 with counts listed below under "Periodic Counts." It is my understanding that counts can fluctuate on an ascendiong plane during treatment and that 6 to 8 treatment cycles may be required before any concrete results appear. I remain optimistic with this treatment plan and overall MDS considerations!

My favorite websites for MDS are:
www.umassmed.edu MDS Center at UMass and Dr. Raza
www.aamds.org Aplastic Anemia and MDS International Foundation
www.mds-foundation.org The MDS Foundation

Periodic Counts:
1/31/05 WBC 1.7 RBC 3.75 Hgb 13.8 Plt 193 ANC 0.8
12/14/05 WBC 1.4 RBC 3.42 Hgb 12.5 Plt 144 ANC 0.6
3/1/06 WBC 1.0 RBC 3.53 Hgb 12.2 Plt 105 ANC 0.37
6/19/06 WBC 1.2 RBC - Hgb 11.7 Plt 127 ANC 0.4
7/17/06 WBC 0.9 RBC 3.16 Hgb 10.6 Plt 117 ANC (too low to register)
12/4/06 WBC 1.1 RBC 2.93 Hgb 9.6 Plt 138 ANC 0.4

larry gard

[knstone]

To MDS colleagues,
Larry Gard, age 79, Cincinnati, OH, succumbed to MDS on Nov 19, 2008. He had transformed to AML and decided on Hospice at home with his family.
He was in good spirits to the end.

[Ruth Cuadra]

Kirby,

Thank you for letting us know about Larry's passing. If you are in touch with his family, please forward our collective condolences. His detailed posts to Marrowforums were a great source of information about current treatment options that I'm sure our members will refer to gratefully in the future.

Sincerely,
Ruth Cuadra
Marrowforums Administrator