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Old Mon Aug 14, 2006, 12:10 PM
Loretta Loretta is offline
Join Date: Aug 2006
Location: Hurst, TX
Posts: 69
Loretta Vandergriff's MDS story

Hi! I’m Loretta from Dallas-Ft. Worth area of Texas, age 58, mother of 3, blessed with 7 grandchildren, and wife to Jim for 39 years. I taught elementary school for 27 yrs., before I took medical retirement after a June2005 dx. of Myelodysplastic Syndrome RAEB-2. I had felt very fatigued, sometimes faint, but thought I was just doing too much (teaching full time, caring for my 86 yr. olf father, and 80 yo step-mother in my home, serving as Pres. of our district's teacher assoc., babysitting grandchildren on wknds.) My daughter, an oncology nurse at local children's hospital thought something was wrong because of my extreme paleness, which I attributed to "not enough beach time in the past few years." My bone marrow biopsy of June 2005, showed 10-15% blasts,with Auer rods. From June, through November, I was transfusion dependent, receiving red blood cells, every 3 weeks when my hemoglobin dropped below 8 or 7.

In August, of 2005, I began a series of Vidaza shots. (14 shots, 2 daily, for 7 days, Mon.through Fri.of the first week, and then, Mon. and Tues. of the following week.) Every 28 days I would begin another session of Vidaza shots. My counts fluctuated during the first four sessions, but after Nov. I became transfusion independent. In Dec. 2005, I had my fifth session of Vidaza, then stopped to be admitted to Dallas Baylor Medical for a peripheral stem cell transplant.

On my Dec. appointment with Dr. Joeseph Fay at the Bone Marrow Transplant Center of Dallas Baylor Medical, I was told they had found a donor for me who was just one antigen off; the A2. We were told that the success of a one antigen unrelated donor mismatch (MUD) transplant was as successful as perfect match donors. I was scheduled for a peripheral stem cell transplant in Jan. 2006, but it was stopped after 3 days of induction chemotherapy, because my antibodies attacked the donor cells (leaving me with only a 16% chance of engraftment.) I was told by Dr. Fay, that the transplant would have most likely been fatal. I was released to go home after my ANC began to recover. Dr. Fay mentioned that it was unlikely I would find a perfect match donor and I would probably not be a transplant candidate, but they would continue the donor search. When asked about cord blood transplants he didn’t think that was an option for me.
I was confined to my home, for about 2 months, until my counts recovered.

I am continuing treatment of Vidaza (7 days of shots every 28 days) and Aranesp shots every 2 to 4 wks. as needed. I have been transfusion independent since Nov. 2004. My blood counts have remained close to normal since that time, except during the transplant interruption of treatment.

My MDS has only affected my red blood cells, or my hemoglobin counts. Normal hemoglobin range is 11-14, and my counts ranged from a low of 6.3 (in June 2005) to 11- 13 in the last few months.

(During Jan. and Feb. I did not have any Vidaza, but had a 26 hr. infusion of Etoposide as induction therapy for a PSCT at Baylor Hospital in Dallas.)

Vidaza: I have had good results from Vidaza. In April at a yearly check-up my cbc came back abnormal. Hemoglobin 6.9, dropping to 6.3 by end of May. I needed red blood transfusions (2 units) every 3 wks. since the end of May. In August I began first Vidaza treatment. Nausea controlled with Kytril. Only discomfort was bruising, blistering, skin peeling, and inflamation and tenderness at shot sites (also sometimes constipation and/or diarrhea.) I continued Vidaza every 28 days and Aranesp every 2 wks. By Nov. (4th Vidaza session) my counts were in normal range and I no longer needed transfusions. (I stopped Vidaza during Jan. and Feb. when I was hospitalized for a peripheral stem cell transplant, which was stopped on 3rd day of hospitalization.) After my counts recovered from Etoposide chemotherapy infusion, at the end of February, I resumed Vidaza shots. May 1, I began my 8th session. My 9th session wa 7/24 through 8/1.

On June 1, I went to M.D. Anderson for a 3rd BMB. I was reviewed by Dr. DeLima, who said I was a transplant candidate and my donor search was transferred to M.D. Anderson. Since my BMB results, showed “3% blasts” and “No morphological evidence of Myelodysplastic Syndrome” De Lima said with my positive response to Vidaza we would not move to transplant at this time.

We are continuing my donor search, monitoring my CBCs, continuing Vidaza, and my next BMB is scheduled for Nov. 2006. My counts continue to be in the normal range as of 7/24/06.

Loretta, dx 5-2005 MDS, RAEB-2, treated with Vidaza and Aranesp
Loretta 58
MDS-RAEB dx 6/05
positive response to Vidaza 8/05 to 11/06
progressed to AML 11/28/06
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Old Tue Aug 15, 2006, 02:00 AM
Ruth Cuadra Ruth Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 612

Thanks so much for sharing your story. We've read about patients' good and bad experiences with Vidaza, but to read that you are actually in remission with no evidence of MDS gives a lot of hope to other patients.

Ruth Cuadra
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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Old Wed Aug 23, 2006, 09:55 PM
JennyC JennyC is offline
Join Date: Aug 2006
Posts: 3
Dear Loretta,
Thank you for sharing your Vidaza success story. How wonderful for you that you are in remission! So happy for you. I'm a caregiver for my father who has MDS and we are just starting the journey into the medications. It is great to know that there is a ray of hope out there.
Caregiver for Father MDS dx 11-04, tx dependent, Exjade 8-06, cyclosporin 8-06
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