23 weeks pregnant

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Offline avasmom

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23 weeks pregnant
« on: February 23, 2010, 12:27:58 AM »
hey everyone, i know alot of u strongly disagree with having more children if u have one with thal. but i am pregnant and i had a few questions about stem cell transplant. at the facility that my daughter is treated at a handful of the kids have undergone the transplant and have been cured of thal.i know that my new baby boy would have to not be a major to cure ava , but what if hes a minor?im waiting for the 'kit" in the mail for the cord blood banking. so...if my new baby isnt thal major and he is an exact match for ava....i heard that ava would have to go through chimotheropy and be quarantine for a month because they would basically have to remove her immune system so they she wont reject the stem cells, and that if she gets sick or incounters any bacteria while in quarenine that it could e fatal.if anyone has any information or experience with stem cells or the procedure please help , i would love to hear your opinions and insight too
                                      AVASMOM

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Offline Andy Battaglia

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Re: 23 weeks pregnant
« Reply #1 on: February 23, 2010, 03:22:27 AM »
We have several members whose children have undergone bone marrow transplants (BMT) during the past few years. Recently Madhavi has chronicled the story of Mohanish and his BMT at http://www.thalassemiapatientsandfriends.com/index.php?topic=3125.msg31246#msg31246

I do want to clarify that what you are talking about would use the stem cells from the cord blood if there is a match, and this does modify the procedures some and can also result in an outcome where there is a mixed chimerism, in which both the donor stem cells and the recipient's bone marrow co-exist without reaction. If the new child does turn out to be a match and you do want to pursue this, I would suggest talking to both Chicago and also Dr Krishnamurti in Pittsburgh. Dr Krishnamurti has been a pioneer in developing a chemotherapy treatment to prepare for the BMT that is not as harsh on the patient. The success rate in the US for cord blood derived stem cell transplants in thalassemics is very high and the results have been quite good in recent years. 

http://www.chp.edu/CHP/Krishnamurti,+Lakshmanan,+MD+

Quote
Lakshmanan  Krishnamurti,  MD 

Job Title Director, Comprehensive Hemoglobinopathy Program
Division of Pediatric Hematology/Oncology   
4401 Penn Avenue, Suite Floor 9
Pittsburgh, PA 15224
412-692-7192 Phone
412-692-7693 Fax
Email lakshmanan.krishnamurti@chp.edu
Andy

All we are saying is give thals a chance.

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Offline avasmom

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Re: 23 weeks pregnant
« Reply #2 on: February 23, 2010, 04:41:32 AM »
so is there a difference between a marrow transplant and stem cell transplant?

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Offline Andy Battaglia

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Re: 23 weeks pregnant
« Reply #3 on: February 23, 2010, 05:20:34 AM »
Although bone marrow and stem cell transplants are basically the same, the difference is the source of the cells that are transplanted. In a BMT, the stem cells are harvested directly from the bone marrow in a procedure that does cause some pain to the donor. When stem cells are harvested from the blood, it is much easier on the donor since it's like giving blood. With cord blood, it is the stem cells from the cord blood that are used. In all cases, stem cells are transplanted to the recipient. Of the three, the stem cells from cord blood pose the lowest risk for graft versus host disease after the transplant.

I believe any parent considering a bone marrow or stem cell transplant should educate themselves extensively about what is involved and what to expect in both the short and long term. Being informed can help to make the whole process much less intimidating as it progresses, as the parents know what they can expect at each step. Madhavi's posts are a great asset to this site in helping to guide others through the process and I hope you thoroughly review them.
Andy

All we are saying is give thals a chance.

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Offline avasmom

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Re: 23 weeks pregnant
« Reply #4 on: March 03, 2010, 11:13:35 PM »
thank you very much andy!!i appreciate it. this is not something that im planning on jumping into. like ive said on previosly posts , her transfusions go smoothly and no reactions to blood or anything.and plus i know its a bit risky, nothing i would take into my own hands. but if things got complicated with her transfusions or it was something she felt strongly about as an adult then i would support her of course . thank u very much again
         avasmom

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Offline Zaini

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Re: 23 weeks pregnant
« Reply #5 on: March 05, 2010, 04:19:47 AM »
Hi Avasmom,

Congratulations on your pregnancy, :hugfriend i wish you all the luck in the world and i'll pray that your new baby would be free of thalassemia and a perfect match for sweet little Ava, :angel2 lots of hugs and kisses for sweetie pie :kissy .

Zaini.
^*^Xaini^*^

Re: 23 weeks pregnant
« Reply #6 on: March 07, 2010, 03:32:47 AM »
Hi Avasmom,

I'm kinda going through the same as you.  "KIND OF".  =)

I'm planning that when I deliver the baby, I can use the cord blood for cord blood transplant for my little son.

From MY experience, if you're considering BMT, you need to speak to bone marrow specialists, and if you're considering cord blood transplant, you need to speak to cord blood specialists, both are not the same.  Anyone dealing w/ stem cell transplant can tell you about it,..but things change somewhat depending on which route you go..bone marrow or cord blood.

If you deliver the baby and have the cord blood collected.. try to do it at the hospital that participates in it.. because it is veryyy important that they collect it properly.  I heard a few days back (I had called up cord blood centers, their number is on marrow.org) that approx. out of 8000 cord blood collected, 3000 make it to the transplant list.. but I'm sure they'll take special care if they knowit's being collected for a family patient..
but still.. it's our job to take care of these details.

There are a lot of factors involved w/ bone marrow.. for some races, finding a bone marrow match isn't hard.. for minorities it's almost rare.   that kinda ruins the bone marrow transplant plans.

cord blood transplant is fairly new.. compared to bmt.. not too many people are comfortable w/ it. 

However for either one.. iron overload can complicate the procedure.. so lots of transfusions and waiting too long for transplant is also something to look into.

There's  a lot of research to do before one starts feeling comfortable with the treatment plan.

also..u can ask ur dr about when you can find out if this baby has thal mutation gene, etc. 



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Offline aysam

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Re: 23 weeks pregnant
« Reply #7 on: March 07, 2010, 09:17:44 PM »
hi all hows everyone miss u guys heaps aysam he is doing fine i finally did it i come to lebaonon but only to find ot im three mionths pregenet with twins
i testsed the babies botha had thalaasemia majour so i had a abortion and the realy bit that hurts is they were identical
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline Andy Battaglia

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Re: 23 weeks pregnant
« Reply #8 on: March 07, 2010, 10:34:11 PM »
Mariam,

I'm sorry to hear about that.

How is Aysam doing with chelation now? What is he using?
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: 23 weeks pregnant
« Reply #9 on: March 08, 2010, 04:36:46 PM »
Mariam,

I am really sorry to hear that,but its good hearing from you,keep in touch,love for Aysam  :hugfriend .

Zaini.
^*^Xaini^*^

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Offline aysam

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Re: 23 weeks pregnant
« Reply #10 on: March 08, 2010, 06:54:33 PM »
hi aysams iron has gone down to 2500 wich is very good here in lebaonon his liver tests and all others were very good
i think i know hwy he gets trassfused every 3 weeks blood is fresh wich meens next day and they put more than they do in australia he has gone back to australia today we will find out how low his hem is and also he never got sick at all in 5 months knock on wood
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline Manal

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Re: 23 weeks pregnant
« Reply #11 on: March 08, 2010, 11:53:15 PM »
Sorry Mariam to hear those news  :(, but thank God you are fine now.

It is great to know that Aysam is doing well and that ferritin has dropped. What were their recommendation for him in Lebonan???

Are you still on exjade??

Manal

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Offline aysam

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Re: 23 weeks pregnant
« Reply #12 on: March 09, 2010, 04:13:46 PM »
hi manal no recomandation except the fresh blood and the time they are giiveing them like every three weeks and yes he is on exjade still
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

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Offline Sharmin

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Re: 23 weeks pregnant
« Reply #13 on: March 09, 2010, 07:13:02 PM »
Dear Mariam,

I am very sorry to hear about the loss of your twins.  That must have been very difficult for you. 

I am very glad to hear that Aysam seems to be doing well.  My love to him, wishing him good health always.

Love,

Sharmin
Sharmin

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Offline aysam

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Re: 23 weeks pregnant
« Reply #14 on: March 10, 2010, 12:29:49 AM »
well the bad news is his hemaglobion is 9.7 and his ferriton is 3200 o not to good
, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )

 

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