Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: minimo156 on October 24, 2007, 11:32:55 PM
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Hi there
Hope you are all happy and well. I am Mo (aka mini mo) and had thal major and had a bmt when I was nearly 7 (6.6.97). Thankfully I'm much better and am currently in 2nd year college (UK).
This site is full of brave people and I salute you all and hope you are in good health. Hopefully I will be able to contribute to answering some questions although with Andy, Danielle and everyone else around there doesnt seem much point! :dunno
But seriously any questions and I will be happy to answer them
Many Thanks
Mo :smiley
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Hi Mo :wink
you welcome to our and of course your site am also made for my son BMT and aftr that i made for him PBSC and thank you for your salute .. but can you please tell me where did you done your BMT ?
khalifa
state of kuwait
one for all and all for one
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Hi Mo,
:welcome to the site. It's really good to know that you are here. Please tell us about your success story.
Your opinions will always be welcomed and feel free to post your suggestions and replies to the questions.
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Hi Mo,
Welcome aboard :),please do share with us your story about BMT,and problems before and after BMT.
Take Care,
ZAINI.
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Hey again
Thanks Zaini and Sajid for ur welcomes. I had my bmt in Royal Manchester childrens hospital (in the UK) and well ... the bmt was successful but it was also very hard. I remember getting a hickman line near my chest and shoulder(also known as a catheter) and I remember the nasty tablets I had to have including a pink one (I had to have them crused because I couldnt swallow and they made me sick).
There were many problems before my bmt - I was nearly always ill, fell really behind in school and mosque, I had very low confidence and this has stuck with me unfortunatly. :(
I dont remember a great deal but after the bmt I also had a few problems. But I need to go now (sorry) so I will be on later and tell u my problems and benfits after bmt.
Thanks again
Mo
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and thanks khalifa for ur welcome ...
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Hi Mo
:urwelcome to this wonderfull site, I have just join few days back but this site and everybody in this site are just Great.
We are realy keen to hear you story.
So pls. do write SOON.
Harminder.
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Thanks Harminder, ur right this is a great site.
Now for the problems after my bmt:
After my sister donated her bone marrow to me (which was very kind) i was doing well despite the persistent illness until the last week where I fell very ill and the doctors feared it was a rejection. All praise to Allah(God) it wasnt and I went home and was in semi isolation for about 6 months, basically I was advised not to go out too much only wen neccessery. Another big problem happened a few years after my bmt (I was nealy seven when I had bmt) I suddenly came ill my eyes went very red and I was coughing a lot. The doctors didnt know what was going on so they took a bit of my left lung to see what the problem was ... it was my sisters cells fighting my cells (or so I was told) but they gave me some medication and I was much better. When I woke up from that surgey I found a tube in my rib and everytime I breathed in it hurt so bad I screamed the place down and so i was sedated and given painkillers (why they couldnt do that before I willl never know!!)
Anyway I recovered and a few months later I got shingles next to my hip which tickled for a few days and absolutly wrecked the next few days, fortunatly it went away but left its mark :whyme
After that I was pretty much ok, and I left primary school, 5 years later left high school and Im in my 2nd year in college studying business, economics, accounts and chemistry (all A level)
Thanks for taking an interest and hope to hear from you soon
Mo
Ps ur right about the people as well ... makes ppl feel very welcome
(This is me wen on youtube) :laughspit LOL
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Welcome to the group!
So Mo, are you 100% cured now without any recurring problems from the BMT?
The BMT was a very courageous thing to go through. I am glad that you are well.
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Hi Mo and welcome to the site. Your input is greatly appreciated
Take care
Manal
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:hithere Mo
Welcome to this wonderful site . I am new and My daugter younger daugter is 8 months old and tommorrow we are going for HLA mapping test for her .I am praying to go that her hla get matched with us or my elder daughter .Can you please tell me what is the rate of success BMT in smaill infants and also whether doctor do BMT in Smaill infants who are less than 1 year ?
Its nice to hear your story that enlighten a ray of hope in all of us (every one will agree with me :agree) .
with regards
Rupali
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I am new and My daugter younger daugter is 8 months old and tommorrow we are going for HLA mapping test for her .I am praying to go that her hla get matched with us or my elder daughter .Can you please tell me what is the rate of success BMT in smaill infants and also whether doctor do BMT in Smaill infants who are less than 1 year ?
with regards
Rupali
Hello Rupali,
The chances of HLA matching is 25% with the sibling. The success rate depends on a lot of factor's including liver enlargement, liver fibrosis and Iron chelation. I do NOT think BMT is done on child less than 2 years of age.
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BEST OF LUCK RUPALI
Hopes your daughter get a proper match.
Its true as Narendra said that BMT is not done on the children less then 2 yrs. of age.
Love
Dimple
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Hi
This information is new to me, but i know a patient here in Egypt that has made a BMT when she was 11 months and now she is 3.5 years
Manal
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Hi
Bmt is most successful (success rate 85%) if it is done prior to 15 transfusions, that is before problems connected with iron overload starts.Here too my hema suggested the best age as between 2-3 years.
Regards
MAHA
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Hi
This information is new to me, but i know a patient here in Egypt that has made a BMT when she was 11 months and now she is 3.5 years
Manal
Manal.. May be I should have been a little more specific... As far as I know, BMT is not done for a child under the age of 2 years in India. This is what the guru of BMT in India (Dr. Mammen Chandy) told me
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The age at which a center will do a BMT for a child varies around the world, but the avoidance of host vs graft disease (HVGD) is best in children who have received the fewest (or no) transfusions. The fewer transfusions, the fewer foreign antigens that have been introduced into the patient's body, and the less likely that the child wil get HVGD. Also, the child will also have less iron caused damage to the organs, specifically the liver.
BMT has been used for some conditions on infants less than one year old, but this is controversial and mainly reserved for conditions where the patient has little chance to survive without intervention. Since thalassemia can be well controlled with treatment, it normally would not fall into this category.
From http://www.seattlecca.org/patientsandfamilies/pediatricCare/pediatricBoneMarrowTransplant/Innovations/
We have had great success performing transplants for infants with acute lymphoblastic leukemia (ALL) diagnosed before the age of one year. In these children, use of transplantation is controversial. The Children’s Oncology Group (COG), a national consortium of pediatric cancer care centers, recommends against transplantation for these children, says Sanders. However, their overall rate of disease-free survival is only 20 percent with conventional chemotherapy, she explains — while it’s 76 percent among those who receive a transplant through SCCA and the Hutchinson Center.
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Hi all
Thanks for your wishes Yesterday I have gone for HLA mapping for both of my daughters aand now waiting for the reports . As I was going through Puneet Posts reagrding wheat grass I think wheat grass really benefit I have also started giving this juice to ambika but had to stop because her cold is not getting cured due to this juice . now Iam thinking to start it again.
I just want to know that after BMT does the reciepient Physical appeareance get distorted.I really don't know what to do?
Rupali
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I just want to know that after BMT does the reciepient Physical appeareance get distorted.I really don't know what to do?
Rupali
For transplanting the bone marrow, chemotherapy is used - which is used to kill the white blood cells, which protect our body against any foreign bodies (But, in case of BMT, we do it for the White Blood Cells to NOT attack and let the foreign body(Donor's Bone Marrow) settle in the receipients body
Chemotherapy has it's side effects, as far as I know, the physical change seen would be hair loos and wieght loss, but that is temporary.
From: http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Undrstnd_Treat_Opt/Lrn_Other_Treatment/Chemotherapy/index.html
Side effects Of Chemotherapy
Some common side effects include:
Hair loss
Loss of hunger and loss of weight
Sores in the mouth and throat
Nausea and vomiting
Constipation
Diarrhea
Tiredness (fatigue)
Numbness of fingertips or toes caused by damage to the nervous system
Damage to the heart, liver or kidneys
Delays in growth and the ability to learn for some children
Infertility
I have seen some patients go through Chemotherapy and after loosing weight have gained the weight as well as got more weight after chemo. And obviosuly, the hair which is lost is going to come back
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Hi there
Yes as Narendra said all that happened to who take Chemotherapy and as what happened to my son Abdulwahab he lost his waight from 28 kilos to 18 kilos also not only from Chemotherapy he got some virale infiction and CMV who destroy his abdominale like his stomach and some PpL they have very light problems ... Now my son Abdulwahab stopping Medrole since 20th of september he start to go to the normale shape and he lost just one kilo (he was 29 now he is 28) ....
khalifa
state of kuwait
one for all and all for one