about my cute girl

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Offline van

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about my cute girl
« on: October 25, 2011, 09:21:30 PM »
Hi Friends,

Thanks to Andy, who allow me to join this group.

We are very happy seeing this forum while doing some on line research on URTH Trial (A Pilot Trial of Unrelated Donar Hematopoietic Cell Transplantation).
We would like to join in this family group and want to be as a family member.

I am a father of 18 months old cute baby girl. My baby girl is Thalassemia patient and was diagnosed at the age of older 5. We are doing regular blood transfusions every 4 weeks and Desferal infusions 3 times in a week and it is going to be 4 times from this week onwards.

Me and my wife all together from different families but we both are Thal carriers and we live in US.

We have a plan to do BMT treatment closer in 2012 but we are in dynamo to choose option of the treatment whether it is standard which is in use from many years say like more than 15 - 20 years and other one is in study (URTH) which is still in research. I know both have cons and pros, one with old medicine known success rate and other new medicine with less toxicity may save useful cells with unknown success rate.

Advanced wished to all your valuable suggestions.

Thanks,
Van

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Offline Andy Battaglia

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Re: about my cute girl
« Reply #1 on: October 25, 2011, 11:14:39 PM »
Hi Van and welcome to thalpal,

Do you have a matching donor? What part of the US are you in and have you consulted with any bone marrow transplant centers as of yet?
Andy

All we are saying is give thals a chance.

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Offline van

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Re: about my cute girl
« Reply #2 on: October 26, 2011, 01:03:12 AM »
As per hospital  team, we do have good potential donors in marrow registry but still waiting to make decision on method of transplant. We may have to decide in 1 - 2 weeks of time period.
We belongs to OH state.
Yes, we consulted BMT specialist (who is in Thal clinical research) in the same hospital where we are doing regular blood transfusions.

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Offline Andy Battaglia

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Re: about my cute girl
« Reply #3 on: October 27, 2011, 02:27:53 PM »
Hi Van,

If it's a BMT I am assuming Cincinnati, which has a very good reputation. We have had a couple members here whose children have undergone transplants from unrelated donors and it has gone quite well. I believe the process has advanced enough where it is truly a viable option.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: about my cute girl
« Reply #4 on: October 28, 2011, 12:05:26 AM »
Wishing you best of luck Van,  I pray that your cute girl is cured of thalassemia and that the BMT goes smoothly.

Sharmin
Sharmin

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Offline van

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Re: about my cute girl
« Reply #5 on: October 28, 2011, 08:39:24 PM »
Hi Andy,
Unfortunately its not Cincinnati hosp. We belongs to Columbus and it is Nationwide Childrens hosp, columbus.

We got one potential adult Donar 10 of 10 typing but still thinking method of transplant. Dr @NCH recommendation is URTH (clinical trial) with adult marrow. When I talked with him in Feb,11 it was Cord blood but now its changed.

Our initial thinking was standard (with card blood) which is in use for long but the problem is may chance loss of fertility.

With new method we don't know the results because it started an year ago and even unknown success rate on long term problems like gvhd or rejection.

As per Dr @NCH new method will resolve long term problems and infertility. I hope it will do best but still thinking thinking thinking thinking...

Thanks Sharmin!!

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Offline Andy Battaglia

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Re: about my cute girl
« Reply #6 on: October 29, 2011, 07:04:04 PM »
I would suggest contacting Dr Lakshmanan Krishnamurti, MD at Pittsburgh Children's Hospital. He is the well known pioneer of low intensity chemo for BMT.
Director, Comprehensive Hemoglobinopathy Program
Division of Pediatric Hematology/Oncology and Blood and Marrow Transplantation   
4401 Penn Avenue, Floor 9
Pittsburgh, PA 15224
412-692-7192
412-692-7693 Fax
lakshmanan.krishnamurti@chp.edu
http://www.chp.edu/CHP/Krishnamurti,+Lakshmanan,+MD+

I would suggest that you ask his opinion on related vs unrelated BMT and also about his BMT preparation as compared to what other hospitals offer. I would also ask him if he thinks the hospital in Columbus is a good choice for BMT for thals. It's about a 3 1/2 hour drive from Columbus if you want to meet him in person. I would recommend a consultation with him.
Andy

All we are saying is give thals a chance.

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Offline van

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Re: about my cute girl
« Reply #7 on: October 31, 2011, 02:24:20 PM »
Thanks for the info Andy.

A month ago I met with Dr Krishnamurti at UPMC. As he said, he is doing reduced intencity for many years and it looks like he started new method. Some medicines he using are the same but I didnt check the method is same or not and I missed to ask that. I give him a call and will check it.
I am in IT and had a plan to move Pittsburgh if my employer has any projects over there but unfortunately not.

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Offline Sharmin

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Re: about my cute girl
« Reply #8 on: October 31, 2011, 05:15:51 PM »
Van,

In the past Dr. Krishnamurti worked with mixed chimerism - which involved far less intense preparation - and far less toxicity - you may wish to ask him about that.  Sending you loads of prayers. 

Sharmin
Sharmin

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Offline van

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Re: about my cute girl
« Reply #9 on: October 31, 2011, 08:24:19 PM »
Thanks Sharmin, it looks good to me. I will do that.

 

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