Sikcell: People living with Sickle Cell
We still Hope
Stem Cell Cure?
The airways are popping. The media blitz is in full affect. Massive editorial posts have been sent all over the internet. The word is out. There MAY be a cure for Sickle Cell Disease.
According to a New England Journal of Medicine report dated December 10, 2009, researchers say that a new method of bone marrow transplantation cured nine out of 10 adult patients with sickle cell disease.
Researchers gave 10 patients ages 16 to 45 bone marrow stem cells. They gave them low levels of radiation, chemotherapy and high levels of immune suppressant drugs. After 30 months of this study they are crying "CURE".
Wait, not so quick!
Researchers said, “Though most patients in the study are still taking immune-suppressant drugs, researchers hope to eventually wean them off the medications.”
People with SCD normally have spleen problems; this makes them more prone to infection. Think about the infection possibilities when you give a person, who’s already catching everything that blows by, an immune suppressant drug. You may have received a cure for sickle cell, but now you may get cancer to replace it.
Check out the side effects of Alemtuzumab, a drug given to suppress immune system T-cells, and Sirolimus, an immune suppressant to fight rejection.
Let’s not run to the hills crying 'CURE' until you can give a person a better quality of life, not replace their problem with another one
Check out my blog www.sicklecell-ourvoice.blogspot.com for links and more information on this report.
According to a New England Journal of Medicine report dated December 10, 2009, researchers say that a new method of bone marrow transplantation cured nine out of 10 adult patients with sickle cell disease.
Researchers gave 10 patients ages 16 to 45 bone marrow stem cells. They gave them low levels of radiation, chemotherapy and high levels of immune suppressant drugs. After 30 months of this study they are crying "CURE".
Wait, not so quick!
Researchers said, “Though most patients in the study are still taking immune-suppressant drugs, researchers hope to eventually wean them off the medications.”
People with SCD normally have spleen problems; this makes them more prone to infection. Think about the infection possibilities when you give a person, who’s already catching everything that blows by, an immune suppressant drug. You may have received a cure for sickle cell, but now you may get cancer to replace it.
Check out the side effects of Alemtuzumab, a drug given to suppress immune system T-cells, and Sirolimus, an immune suppressant to fight rejection.
Let’s not run to the hills crying 'CURE' until you can give a person a better quality of life, not replace their problem with another one
Check out my blog www.sicklecell-ourvoice.blogspot.com for links and more information on this report.
Comment
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Comment by P.Allen Jones on February 16, 2010 at 12:31pm
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Please research the effects of bone marrow transplants. Your daughter's age and health condition will be a factor. The internet has a wealth of information (good & bad) on this subject. Inform yourself, talk, talk & talk some more to her doctors, and then do what you (and she) thinks is best. God bless you on your journey.
And, please tell us your (her) story. This could be helpful for someone else whose considering bone marrow transplant.
Also, see my blog at www.sicklecell.ourvoice.blogspot.com and I'll tell her story there too.
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Comment by Angela Davis-Beckford on February 13, 2010 at 11:35pm
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Thanks for sharing this information, the doctors has been speaking to my daughter regarding bone marrow; I shared with her that this would be her choice and that whatever she decides I am here to back her. My daughter is 17 turning 18 in June.
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Great thanks. It's important for the patients to tell the "real story" behind these doctor's "cure" stories. The doctor gets the public attention and the patient gets the side effects! That's why this kind of blog is SOOOO IMPORTANT!
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Comment by Sickle Cell Warrior on January 24, 2010 at 6:00am
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hi Pat, I talked to her, and she's not ready to come out of the closet yet. The treatment took a whole year of her life (she was practically living in the hospital), and she's enjoying spending time with her friends and family again. I will shoot her another email, for her to share her story when she is ready to.
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I would love to speak to one of the study participants. Could you have them post their thoughts/experiences on this Ning network. I'm sure everyone would love to hear what doctors are doing to (for) us in regards to "cures".
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Hey Pat...I was almost on the bandwagon of celebration as well, until I got more info from one of the 10 people that was in the study. The more she told me about it, the more I realized that all is not rosy the way the news reports claim. However, I'm just glad that it's another step in the right direction.
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