Duration of Chemo for Bone Marrow or Cord Blood Transplant

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Offline JV

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Duration of Chemo for Bone Marrow or Cord Blood Transplant
« on: January 31, 2012, 09:07:03 PM »
Hello to all....my Wife and I are currently looking into the possibility of a Bone marrow or a cord blood transplant, depending on the match, on our 18 month old daughter with thal major. I have spoken with many of the Doctors in the World that specialize in this and was concerned about the chemo stage of it. Mainly the duration and kinds of chemo. All have been different and the duration has been different as well. For example...Duke University was a 2 month process of chemo...however Sloan in New York, Johns Hopkins in Baltimore, Maryland, and various hospitals in Europe and Asia were around 9 weeks on the average. I am interested in anybody also looking in to this process that has encountered similar answers. I have spoken with a number of you already and your feedback so far has been a God sent to my family and I.

Thank you

Re: Duration of Chemo for Bone Marrow or Cord Blood Transplant
« Reply #1 on: February 01, 2012, 01:48:30 AM »
Do you live in the U.S.? Do you have a family member w/o thal who is a match?
I strongly recommend contacting Eileen Scott (Patient Relations) at Cooley's Anemia Foundation.
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

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Offline joyce

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Re: Duration of Chemo for Bone Marrow or Cord Blood Transplant
« Reply #2 on: February 01, 2012, 06:28:44 AM »
Hi JV..

We are planning to do the unrelated cord blood transplant to my kids.
This March will be our first meeting with the DR at Chang Gung Memorial Hospital Taiwan and hopely all will work out fine there.

I'm also concern with the chemo but from what i learn from friends, it only takes few days. maybe a week?
You may want to ask Aabha for more details as she know the procedure. her son cured from Thal by doing the Unrelated cord blood transplant too.

Great news isn't it? :wink

Joyce!

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Offline JV

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Re: Duration of Chemo for Bone Marrow or Cord Blood Transplant
« Reply #3 on: February 01, 2012, 02:05:31 PM »
Nicole...we are in the process of doing HLA matching on our family members, while also trying invitro for a sibling match. I will call Ms. Scott, thank you

Joyce...aabha has been great...we have spoken a lot have felt better since talking to her. I spoke with Dr. Jaing in Taiwan...he said the chemo was around 9 days which was good compared to 2 months at Duke.

We live in the U.S...20 minutes from New York City

Re: Duration of Chemo for Bone Marrow or Cord Blood Transplant
« Reply #4 on: February 03, 2012, 03:34:18 AM »
From my experience its 10 days.

 From memory, first 5 days of oral chemo (10 pills/day!!) and another 5 days of intravenous chemo (worst period of the whole transplant e.g. nausea, vomitting).  Howevery the day after the chemo is done, you will feel normal again.

After, thats when the long wait begins for the new marrow to take over.

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Offline aabha

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Re: Duration of Chemo for Bone Marrow or Cord Blood Transplant
« Reply #5 on: February 03, 2012, 04:12:49 AM »
My son underwent 9 days of chemo.....as he was only 1yr 7mnths old no oral drug for chemo was given...his appetite fluctuated but he vomitted only once when a drug called ATG was given for the first time on day 7 of chemo
i was very apprehensive of the whole process but it was easier than i had anticipated....the doctor and staff gave excellent care and support
aabha

Re: Duration of Chemo for Bone Marrow or Cord Blood Transplant
« Reply #6 on: February 05, 2012, 04:52:05 AM »
Nicole...we are in the process of doing HLA matching on our family members, while also trying invitro for a sibling match. I will call Ms. Scott, thank you

Joyce...aabha has been great...we have spoken a lot have felt better since talking to her. I spoke with Dr. Jaing in Taiwan...he said the chemo was around 9 days which was good compared to 2 months at Duke.

We live in the U.S...20 minutes from New York City
What thalassemia treatment facility do you use?
Cooley's Anemia Foundation is located in NYC, as you probably already know. That's where Eileen Scott is. Her daughter has beta thal major - is in her 20s, married, has a job, is transfused every 2 weeks, chelates with desferal. This was quite an inspiration to me, talking to someone whose daughter is living a typical life with thal major, while waiting to travel to adopt our son who has beta thal major (home two years now). Eileen is an excellent resource!
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

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Offline JV

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Re: Duration of Chemo for Bone Marrow or Cord Blood Transplant
« Reply #7 on: February 05, 2012, 04:27:09 PM »
Hi nwalsh528...we take our daughter every 3 weeks to the Childrens Hospital of Philly (CHOP). I didnt know that about Ms. Scott. Our daughter is full of energy and kindness. It is like nothing is wrong. I believe that we are lucky compared to others. Our children will live happy and healthy lives.

We are looking at all options right now.. keep in touch and all the best

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Offline joyce

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Re: Duration of Chemo for Bone Marrow or Cord Blood Transplant
« Reply #8 on: February 06, 2012, 10:31:13 PM »
Have you considered doing the unrelated cord blood transplant?

 

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