Personal Perspective: MDS Survivor Shares Journey To Wellness
Published: Oct 28, 2010 9:27 am
Aldeane Sööt was diagnosed with intermediate-2 risk myelodysplastic syndromes in September 2002 at the age of 52. She had abnormalities in chromosomes 3, 5, 14, 16, and 17 and five percent blasts (abnormal immature blood cells).
“I was shocked – I felt that I was in the best shape of my adult life,” recalled Sööt. “The one thing I could not handle was that this was cancer. I made a big point of telling everyone it was not cancer, but pre-cancer.”
Sööt lives in Lake Oswego, Oregon, about a three-hour drive from the Fred Hutchinson Cancer Research Center in Seattle, where she received a stem cell transplant.
“When I was given the 18 months to live prognosis, I was only thinking of survival. I was going full speed into a stem cell transplant,” said Sööt.
Stem cell transplantation is the only known potential cure for MDS. Sööt received her transplant in November 2002 without any prior MDS treatment. Her sister was the stem cell donor.
“Little did we know how intense the transplant and recovery would be for me and how little time there would be for any other activity for my husband Peet besides being my caregiver,” recalled Sööt. “A stem cell transplant is not a quick fix.”
A week later, Sööt was back in the hospital, where she spent two weeks recovering from a respiratory infection before she was released for local recovery. She and her husband stayed in an apartment in Seattle to be near the hospital.
Although the donated stem cells started producing healthy blood cells and her MDS was gone, Sööt continued treatment for graft-versus-host disease. Graft-versus-host disease is a complication of stem cell transplantation and occurs when white blood cells from the donor attack cells in the recipient as if they were foreign.
Sööt was also treated for a virus from her donor. The donor’s healthy immune system was able to handle it, but Sööt’s immune system, weakened from her own bone marrow being destroyed, needed prescription drugs to fight the infection.
“It takes an emotional toll when you know you are free from your cancer but you are not yet well,” described Sööt. “You are not just recovering, but you have new problems arising weekly. It took years for me to be free of all illnesses and finally feel well.”
Sööt was able to return to Oregon about three months after her transplant. The next 16 months were spent recovering at home. She experienced infections ranging from ingrown toenails to a fungal infection of the lungs. Sööt’s lethargy did not consistently improve until late 2004.
“The biggest setback I had during my recovery was four years out from my stem cell transplant,” recalled Sööt.
In 2006, after six months of misdiagnoses, she was told that her graft-versus-host disease had flared up. What started off as hives on her skin turned into scleroderma, a hardening of the skin. Sööt was treated for nine months with prednisone (Deltasone) to suppress her immune system. Afterward, she received Rituxan (rituximab) chemotherapy for six months.
The chemotherapy treatment depleted many of Sööt’s B cells, one of the cell types involved in fighting infection. She developed pneumonia five times in 2009 and has needed three sinus surgeries as of August 2010 to keep her drainage passages clear. Sööt now has to irrigate her nasal passages regularly to avoid another case of pneumonia.
During her treatment, Sööt also underwent four months of physical therapy to keep her joints flexible and her skin pliable. Her therapy included cupping, a type of folk remedy practiced in some Asian countries in which a suction cup was moved along her body to break apart the scleroderma.
Over the years, Sööt’s husband stayed by her side through every doctor’s appointment. “It is best if you have two sets of ears to be sure you are both hearing the same thing. Sometimes you hear what you want to hear,” she advised.
“The fight to get back to normal is one I am glad to do. I enjoy every day of my life,” said Sööt. “There were times in my recovery that I felt I would never have my strength and vigor back, but I kept on track – one day at a time. I am a survivor!”
Today, Sööt is healthy and enjoys a normal life with Peet, her seven children, and her 12 grandchildren.
“I feel in some ways my life is better now after the stem cell transplant. I enjoy being alive every day,” said Sööt.
“Knowing survival is a viable option makes the journey a little bit easier,” she added.
Sööt encourages those with questions about stem cell transplants to visit her website.
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