Andy, ....have you got any idea???

Andy, when i visited the hematologist the last time. We talked about the retrodifferentiation once more and she confuses me a lot. One time she says ''why not, there are no side effects, its his own stem cells'' other times she says'' but you have to know that these are still trails''. When i told her as you are Ahmad's doctor tell me, shall i do it or not?? She answered me saying email doctor Elham and see what she is going to say.
That is what i will be doing the coming days ( though i know Dr. Elham won't say anything bad about what she is doing)

My question is : if the patient didn't react to F HB inducers like hydrea for example, does this mean that he won't too in retrodiff as well. If the Hydrea was able to increase the HB one or one and half gram only, should retrodiff be the same. Should we start hydrea, to reach its maxium benefits then continue the retrodiff , or it is only one increase. Are there people you can have there HB F increased and others don't ??
I know Andy that i shouldn't be asking you, but i just want to know your opinion and i will send her( Dr. Elham) too the same question, but i kind of trust your opinin sooo much

Thank you
Manal

By the way, my hematologist told me that they opened a center for retrodiff in Saudi Arabia

Hi Manal,
I understand your dilemma.  It is so difficult to know what course of action to take.  I know that you will make a very informed decision for your son - as you always have.  You may want to look at the risks and advantages for your son - relative to the treatment you are giving him now - also you may wish the likelihood of effectiveness of the 2 treatment methods.  I am sure Andy will give you more complete information and advice.  I wish your family all the best. 

Sharmin

Manal,

I do think this question is best asked of Dr Elham. Judging from the results that have occurred during trials, I would say that this is a much more successful procedure than fetal Hb inducers. Because this process is not fully understood in how it works I don't think a conclusion can be drawn comparing its effects to those of Hb inducing drugs.

The most recent study can be seen at

http://cgi.thescientificworld.co.uk/cgi-bin/processHtml.pl?Id=2006.01.229.html&format=Dreamweaver

The results of these trials are extremely encouraging and definitely is worthy of investigating. It does seem that all patients in the trial benefited from this procedure.

In conclusion, the single-dose infusion of the autologous RSC into patients with beta-thalassemia major has resulted in a reduction in blood transfusion requirement and improved red blood cell morphology, hemoglobin content, and concentration. Furthermore, the biomarker of iron overload, serum ferritin, fell to a statistically significant level at 6 months postinfusion when compared to baseline. This novel regenerative approach towards ameliorating a genetic disorder, though most probably transitory, is profound and may enhance compliance of young thalassemic patients.

Thanks Sharmin for sharing .

Thanks Andy for your opinion. From your reply i can understand that retrodiff and Hb Inducers drugs works differently in the body or i can say they both target the gamma genes but with different techniques, right?

Anyway i wil email her and let you know
Manal

Manal,

I don't think there is any full understanding of what takes place with retrodifferentiation. It does seem that the reverted cells "prime the pump" and get the bone marrow producing fetal Hb again for at least 6 months. The success rate in the trials is far greater than anything seen with hydroxyurea so however it does work, it does seem to have a better success rate. Long term trials will certainly tell us more about how long it does help. it will be very interesting to see if repeated treatments can prolong the period that the body produces good blood on its own.