One patient with glioblastoma still alive nine years later
by Aurora626 on Wed Oct 08, 2008 12:00 AM
Hello, my fiance's 12 year old daughter was recently diagnosed with PH+ AML. I would like to find as much information as I can on it. Unfortunately, my research hasn't been able to come up with alot of information.
To give a little bit of background. She was first diagnosed with AML-M5 in June '08. Her doctors immediately started her on induction therapy. The first treatment did nothing, the second however, showed some improvement. Since then, she has had a multitude of problems including renal failure. Her doctor then stopped treatment because of her kidneys. A week later, she was in the hospital for a seizure. They then found out that the leukemia had spread to her lungs. They restarted the chemo.
Her father had decided to seek a different opinion and contacted St. Jude's and from there, she was diagnosed as of today 9/8/08 with having PH+ AML. He said it was a very rare and aggressive form of leukemia. It has also spread to her lungs, liver and spinal cord.
Is there anyone else that has experience with this form of leukemia that can give me some information about it please? Such as what exactly does it do? How does it effect her overall rate of survivability? What kind of chance does she have...etc.
by dbeem on Sat Jan 29, 2011 06:00 AM
Hi Aurora. My name is Danny. I am 32 years old. After having recurring mouth sores for several months, I was diagnosed with AML in September 2009. I started induction chemotherapy immediately. During the week of chemo, it was discovered that I was PH+. I was sent home on Gleevec to get my levels acceptable for a stem cell transplant. I was switched to Sprycel after the Gleevec stopped showing progress. By February 2010, I was ready for transplant. It is now almost one year after the transplant, and although I am still working through the side effects of the transplant, I have been leukemia-free for around nine months.
I pray that your fiance's daughter is doing okay. Please write back if there are specifics you would like to discuss.
by ebliss25 on Thu Apr 14, 2011 02:27 AM
Your post gives me hope! My 59-yr-old mom was diagnosed with AML in 4/2009 and immediately started induction chemo. The chemo almost killed her... pooled in her system and destroyed her colon... she had to have a foot long section removed in 7/09. Then they did a course of Vidaza. When that didn't work she went through more in patient chemo and then started on Gleevec when they discovered that she was Ph+ (her original doctors weren't the brightest and told her to go home and die when the induction chemo didn't work. then we got her referred to Oregon Health Sciences University where Gleevec was developed). She had a stem-cell transplant in 6/2010, which wiped out the blasts but did not get rid of the Ph+, so she eventually developed blasts again and has been on Gleevec since. She had another round of inpatient chemo back in November. The Gleevec has been taking a toll on her... fluid buildup in the heart, blood clots, etc. They still can't seem to get the blasts under control. They have been talking about putting her on Nilotanib, but are hesitant due to the heart problems on the Gleevec. I suggested Dasatinib, which her doctors just agreed to today. They want to do a second stem-cell transplant, but her blasts are currently at 30%, so hopefully the Dasatinib will do the trick!
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