Thalassemia Patients and Friends

Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: omega on May 11, 2006, 05:31:04 AM

Title: Unrelated Bone Marrow Transplant.
Post by: omega on May 11, 2006, 05:31:04 AM: My 7 years old daughter is a thalassemia intermidiate. She is transfusion dependent since 2004. She is undergoing a unrelated bone marrow transplant now and it's day 30 tomorrow. She is lucky to have mild GVH and reacting well to the drugs used in the transplant process. We are expected to be discharged on 15th May 2006.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: §ãJ¡Ð ساجد on May 11, 2006, 12:35:46 PM: Hi Omega!,

Wishing your daughter a fast recovery.
:getwell
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Andy Battaglia on May 17, 2006, 11:44:03 AM: Hi,
Where was the transplant done?
Title: Re: Unrelated Bone Marrow Transplant.
Post by: faibe10 on May 17, 2006, 01:47:46 PM: get well soon
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on May 24, 2006, 09:02:59 AM: Dear All

Thank you.

The transplant is done in Subang Jaya Medical Centre in Malaysia. My daughter's Hb is maintained at 11.8 - 12.9 since her last blood transfusion on 28th April 2006. GVH is under control and we hope this would continue...
Title: Re: Unrelated Bone Marrow Transplant.
Post by: §ãJ¡Ð ساجد on May 25, 2006, 04:27:31 AM: Great news!

Best Wishes and get well soon
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Smurfette on May 25, 2006, 05:18:05 AM: :flowers

Hi, Hope that all goes well for you and your daughter...

Best wishes and the best of luck..

Take care
Smurfette

:getwell
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Narendra on June 06, 2006, 09:38:39 PM: Hello Omega,

Nice to hear that your daughter is recovering well. It gives us immense joy to hear about success.

Would you mind sharing how did you get the unrelated donor match the HLA with your daughter?

-Narendra
Title: Re: Unrelated Bone Marrow Transplant.
Post by: mam on June 13, 2006, 01:46:12 PM: Wish your daugther get well soon.....
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on July 30, 2006, 06:10:33 AM: Hi All

Sorry to reply late. I did not have a internet access for quite some time!

Thank you for all the kind wishes

We got the unrelated bone marrow match from Tzu Chi General Hospital in Taiwan. It took us 9 months to find the match. The first matched donar changed his mind not to donate his marrow and we were lucky to find a second donar who evetually donated her marrow in April this year.

My daughter has encountered the GVHD and were treated with ATGAM and sirolamas. She is all right now but her blood count still fluactuating. We are keeping a close watch on the GVHD.

The drug sirolamas has caused many problems, diarrhea, dropping white blood count and platelet, lost of calsium and magnesium. The diarrhea was bad, 2 months long. we have stopped sirolamas a week ago, and the diarrhea is gone now and we are hoping her blood count would stabalised.

She is currently taking cellcept, prednisolone, bactrim,potassium cloride solution, epiin and fluconozole. Drugs we have cut include Valtrex, enalapril, and dilantin. Mt daughter is allegic to cyclosphorine

Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Andy Battaglia on August 01, 2006, 05:42:40 AM: Thank you for the update. Hopefully she will soon be past the side effects of the transplant and the medications. Please continue to keep us posted on the progress of your daughter.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Narendra on August 01, 2006, 05:43:29 PM: Quote
We got the unrelated bone marrow match from Tzu Chi General Hospital in Taiwan. It took us 9 months to find the match.

As far as I know Unrelated Bone Marrow Transplant is NOT done in India. Does anyone know, how to go about to get it done outside of India for my niece?? I have got her HLA matchup done. I would like to see what are our options and would greatly appreciate if someone could point me in the right direction. I think there is some registry we need to register with after sending the HLA typing.

We got my niece's HLA match up done with her brother and parents, but there was no match. So, we are exploring the unrelated Bone Marrow Transplant

Omege, How is your daughter reacting now with the GVHD? I hope she is doing fine now.

-Narendra
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Danielle on August 02, 2006, 02:42:42 AM: Hi Omega!
I wish your daughter a speedy recovery, and I hope the BMT is ultimately successful! :flowers
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Poirot on August 02, 2006, 10:37:39 AM: Narendra,

You may want to contact these organisations, the first one seems to be a Dutch outfit, the latter two are in singapore:

http://www.bmdw.org/
http://www.hlaregistry.org/
http://www.bmdp.org/

Poirot
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on November 03, 2006, 01:57:27 AM: Hi All,

It has been more than 6 months from day 0 of the Bone Marrow Transplant. My daughter still taking steriod and other anti-GVHD drugs. The doctor is cutting the drug at a very slow pace in order to control the GVHD. GVHD can caused a lot of problems in Unrelated BMT cases and the drugs used to control GVHD are extremely expensive.

My daughter's blood count is stabalized but not back to the normal level at this stage and it takes time to go back to the normal level. The good news is her HB level is around the region of 13 - 15 and she is not transfused for the past 6 months. Platelet is around 60000 - 80000 at this stage. White blood count is the only one which give us problem and it's around 2100-3000 currently. We are not sure if the drugs my daughter is taking can suppress the white count.

The Bone Marrow has engrafted successfully in this case but the doctor is keeping a close eye on GVHD and other side effects of the drugs. Blood test has to be done weekly to monitor the blood count. Hope will get all this over in 1 or 2 months time. We have been very very stressful from day 0 till today.

Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Manal on November 03, 2006, 02:18:49 AM: Dear Omega

My heart goes with you. I hope that she will recover soon and there will be no more side effects. I will pray for your daughter . Believe me you will forget all your stress when she jumps from her bed and you see her playing healthy and safly again

Take care of her and yourself

Manal
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Andy Battaglia on November 03, 2006, 06:18:10 AM: Omega,

Your daughter has made good progress and continues to improve. That's great news! :biggrin

The immune system is suppressed for a BMT and it is slowly restored. Right now, it is very important to protect against exposure to any infections, as her immune system is very weak.

Khalifa will agree with you about the stress involved. Deciding on a BMT for your child and then watching the slow recovery process provide more stress than any parents needs. Our hearts go out to you. :heartred
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on November 29, 2006, 06:47:52 AM: Hi All

Greeting from Malaysia!

My daughter's blood count has stabalized for the past few weeks. White blood count 4000, Hb 14.1 and Platelet is around 76000. We are going to the hospital tomorrow for a blood count. Hope we'll get a good result.

The doctor is reducing the drugs gradually to ensure that the GVHD is under proper control. We schedule to go to Subang Medical Centre to meet up with our transplant doctor on 18th December for a follow up consultation.

Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: sahil on November 29, 2006, 10:48:31 AM: Great News! Hope that the Counts tomorrow are normal!

Take Care!
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Manal on November 29, 2006, 12:01:52 PM: Dear omega

Hope everything will be fine. Please keep us updated.

Take care

Manal
Title: Re: Unrelated Bone Marrow Transplant.
Post by: §ãJ¡Ð ساجد on November 29, 2006, 01:33:44 PM: Hi Omega!

Wishing you best of luck for the upcoming blood count. :thumbsup

Take care, Peace!
Title: Re: Unrelated Bone Marrow Transplant.
Post by: STEVEN on January 06, 2007, 10:35:39 AM: HIHIHIHI OMEGA congratulation ....gald to hear that ur kid is well
Im a newbie here .........n my daughter is 5 yrs old thala major too

My wife n i just got back from SJMC ( OH we are malaysian too) and we are thinking of doin the bone marrow transplant aswell.....wud really love to hear more details from u as things are not very clear for now or maybe can give me a thinker on my message

Hope to hear from u soon ....be goin back to see the doc in SJMC on the 18 Jan 2007 .
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 07, 2007, 06:38:06 AM: Hi Steven,
I presume you're seeing Dr Lin. My daughter is fine now and we're reducing the drugs and pray hard that the GVHD would not come back. Her blood count is ok but we're hoping the white blood count would reach the normal level soon. In an Unrelated transplant case, the GVHD is a major problem indeed.
Do you plan for 2 transplant for your daughter? If yes, gate you found a matched bone marrow or cord blood?
Our next appointment is on 15 March 07 to see Dr Lin. We hope everything would be fine by then.
Should you need more info, please let me know.
Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: KHALIFA on January 07, 2007, 01:38:37 PM: Dear omega i know it's too late to say good luck but i thanks my god you get good result regard the GVHD it's need time even me am suffering from it but with medrole and some drugs you will solve it so don't be hurru and keep your doughter from heumidity and the coold weather don't give her shower and take her out emediatly it's too dengrouse keep her clean good and fresh food NO SALT NO OIL just a small a mount of naturale OLIVE OIL ..
all the best for you and for your daughter
khalifa
state of kuwait
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 07, 2007, 09:06:48 PM: Dear Khalifa
Thank you for your kind advice and we highly appreciate it.
Since your son is a sibling transplant, the GVHD should be of the milder one, unlike the unrelated case. Is your son still taking any anti GVHD drugs now?
Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: KHALIFA on January 07, 2007, 09:59:49 PM: Dear omega
my son still the imunety supress drug like MEDROLE and just one month we stoped the CELSEPT ..and also some antibiotic like bactrim two day a week also some medecine for protection a gainst the bacteria ..
khalifa
state of kuwait
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 08, 2007, 12:26:02 AM: Hi Khalifa
My daughter is still on Cellcept, Sirolamas and Prednisolone, as the main anti GVHD drugs in addition to the protection drugs. We're reducing the doses gradually. She is back to school already.
How's your son's blood count? My daughter's latest count, white blood count 3800, hb 14 and platelet 108000.
Thanks.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: KHALIFA on January 08, 2007, 12:40:59 AM: am just want to know from where you got the bone marrow and who give the BM is thalass. minore or normal ?
regard my son his HB a round 10 and 12 and everything within normal don't forget my son have the BMT on 30-06-2005 and also have real bad GVHD
khalifa
state of kuwait
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Sharmin on January 08, 2007, 02:06:22 AM: So happy to hear that your child is doing well. wishing continued good health to your daughter!
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 08, 2007, 02:18:18 AM: Hi Khalifa
My daughter's transplant was on 12 Apr 2006. Her bone marrow donar was from Taiwan. Her blood count is ok except the white count is fluctuating. Do you gate the same experience?
Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: KHALIFA on January 08, 2007, 02:39:21 AM: Hi omega
yes i have same problem with my son regard the WBC and also the PLT, RBC you will find out all these numbers one day up second day down so don't be upset because the new bone marrow is warking verey haqrd to improve it's self in the new body and try to destroy all the old bone marrow and all the old cells which the old bone marrow did it ,,for this reason you doughter have th GVHD and as i understand from Dr javed and Dr paola the old lemphosite cells try to fight with the new cells because the new cells need place to stay and the old cells try to protect it's place ...so for this reason your doughter have GVHD and there is three kind low risk of GVHD and medium risk of GVHD and bad one of GVHD who my son got it
i don't know how bad is your doughtr with the GVHD but as you explain to me she go to school that mean she is ok and what she have is verey mild GVHD ..so don't warry the old lempho.will desapear slowly ...
khalifa
state of kuwait
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 08, 2007, 05:39:01 AM: Hi Khalifa
My daughter's has a class 3 GVHD, class 4 being the worst case, so she had quite a serious one. That was back to jul 06. The drugs seems to control it, but we're now reducing the drugs gradually and worry if GVHD would come back. The blood count seems to be ok now and we really hope this would continue.
Most of the sibling transplant cases here seems to encounter milder form of GVHD compared to the unrelated cases.
Is your child back to school? My daughter is wearing a mask and initially she felt a bit uneasy, but she get use to it now!
I hope your child would get the GVHD problem away soon. God bless you.
Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: KHALIFA on January 08, 2007, 05:58:57 AM: no my son he can't go to school because as i told you he was in very bad GVHD and he have some deficulty movment related medrole.. so we have to wait until the medrole finish and imunity build up well..
khalifa
state of kuwait
Title: Re: Unrelated Bone Marrow Transplant.
Post by: STEVEN on January 08, 2007, 06:37:28 AM: HIHIHIH OMEGA .....GUD DAY TO U

JUST TO LET U KNOW YES WE ARE LOOKING FORWRD TO DO BMT FOR MY GAL BUT I NEED MORE INFO PLS.......YES IM SEEING DOC LIN IN SJMC

CUD U PLS CON TACT US AS WE R IN KL IF POSSIBLE

WILL BE DOIN A HLA TYPIN ON THE 18 OF THIS MONTH ... SO IF POSSIBLE CUD U PLS GIVE ME A CALL ........ OREDI SEND U MY NUMBER ON UR PRIVATE MESSAGE .

AT THE SAME TIME THERES A FEW QUESTION WHICH WE ARE VERY EAGER TO FIND OUT
HOPEFULLY U CAN HELP US OUT ...

a)   Where was the HLA typing being done? Dr Lin told us that the HLA typing can be done either in Singapore or US. Singapore is 3 times cheaper than US but the result at times not as good as if it is done in US.
b)   How long have you been waited for the bond marrow search

c)   How compatible is the donor to you child ? How many matched antigen out of the 10 ?

TKS
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Manal on January 08, 2007, 12:32:15 PM: hello Omega

In all the BMT that i read about, usually the patient stays in the hospital from 6 months to one year and even thet are kept in isolation rooms for not less than 3 months . How was your daughter able to her transplant in April 2006 and discharged in May 15 th 2006. Also need to know is it okay to go to school after this short time? Is wearning a mask enough for her especially he is a child and she may not know the importance of keeping it all the time at school.

Anyway, hope your daughter will be totally recoverd and enjoys all the happiness and health

Thanks
Manal
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 08, 2007, 10:02:56 PM: Dear Manal
Bone Marrow Transplant here usually would be in the hospital for 1 to 3 months from day 0 it's all depends on the engraftment of the marrow and blood count. If anti're at a satisfactory level, the patient can be discharged from the hospital. Weekly blood test must be done after the discharge and if the doctor would keep a close watch on the GVHD. My daughter was re admitted 2 times due to the GVHD.
Her blood stabblised and she is back to school now with the mask. She knows what's going on and keep the mask at all time. The mask might not be 100% effective but at least there's some thing. In addition, the protection drugs help as well. Life has to go on!
Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Manal on January 09, 2007, 01:47:20 AM: Thanks Omega for the information. Send my greetings to your daughter and i wish her all the best.

Manal
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 11, 2007, 10:17:55 AM: Dear All
Just got back from the weekly blood test for my daughter. I'm very please with the latest result, White Blood Count 5500, Platelet 100000 and Hb 13.2.The white count has finally gone up! Anti GVHD drugs has reduce to Cellcept and a small dose.
We are now seeing the doctor once every 2 weeks.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Manal on January 11, 2007, 10:02:24 PM: Congratulations Omega, so happy to know this wonderful news.

Keep it up

Manal
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 11, 2007, 10:53:37 PM: Thank you very much Manal.
It was a big relieve and my heart was beating while sending the blood sample to the lab for blood test.
We're reducing the drugs, we're hoping for the best.:)
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on September 04, 2007, 02:52:14 AM: Hi Everyone,

It has been a long time since my last update on my daughter's Unrelated BMT progress. Her blood count is all right now, HB has been 13.5-14.5, WBC 5000-8500 and platelet was ranging from 130000 to 145000 for the past 6 months. LFT test was ok but ALT is still fluctuating. She is on Cellcept only at this stage.

She encountered the skin GVHD in Feb this year and the doctor has to put her on prednisolone again and she finally stopped the drug on 30th July 2007. The doctor has given her an oral prednisolone for her to rinse her month because he suspected there was some evidence of oral GVHD in her month during our last check up in the hospital in mid August. She has improved since then.

She has been going to school since the beginning of the year and things has been ok except she is coughing at this stage. We have done an X-Ray on her lung and put her on pneumonia antibiotic and some cough syrup. She has improved and hope she will recover soon. She has to be admitted if she is fever for IV antibiotic (fear of bacteria in the blood) and we hope that will not happen.

Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Zaini on September 04, 2007, 11:26:51 AM: Hi Omega,

I am very happy to know that your daughter is doing well,wishing her health and joy in future.

LOVE ALWAYS, :hugfriend

ZAINI.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Manal on September 04, 2007, 11:54:48 AM: I am so happy for you and your daughter Omega, you are such a caring good parent. Wish you all the luck in the coming months

Take care
Manal
Title: Re: Unrelated Bone Marrow Transplant.
Post by: §ãJ¡Ð ساجد on September 04, 2007, 02:53:18 PM: Hi,

Wishing you all the best.

Lots of love to your daughter.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on September 05, 2007, 04:48:13 AM: Thank you very much.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on December 12, 2007, 07:07:30 AM: Dear All

It's almost 2 years( to be exact 12 Apr 2008) since my daughter's Unrelated Bone Marrow Transplant. Latest Hb is 14, WBC 8000 and Platelet 130000. GVHD is minimal now and by March 2008, she should off with the last anti GVHD drug, Cellcept. Her ferritin is >2000 now, the doctor recommended us to use desferal 5 times weekly together with L1. We have opt for the non subsidized Exjade in place of desferal and L1. We hope her ferritin will drop within the next few months. Blood letting of 200ml every 2 weeks is planned by the doctor from 12 April 2008 onwards. She will be re-vaccinate as well.

Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: §ãJ¡Ð ساجد on December 12, 2007, 07:23:16 AM: Hi Omega!

Thanks for the update!

I'm so happy for you :happydance It's good to see that she is doing so well. These are pretty good figures! Don't worry about the S.F as it will go down with proper chelation and Phlebotomy.

Wishing you all the best for the future! :goodluck
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Manal on December 12, 2007, 03:22:47 PM: i am really soooooooooo happy for you and your family, i know how hard it had been those two years. Now it is time to enjoy

Take care

Manal
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Canadian_Family on December 12, 2007, 03:56:18 PM: Thanks for the update. Nice Going.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Zaini on December 12, 2007, 06:08:05 PM: Congrats :thumbsup

ZAINI.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: priya on December 12, 2007, 09:35:18 PM: Congrats.

Lots of Love for your daughter.

Dimple.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: KHALIFA on December 12, 2007, 09:45:07 PM: CONGRATOLATION DEAR :hugfriend

KHALIFA
STATE OF KUWAIT
ONE FOR ALL AND ALL FOR ONE
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 04, 2008, 04:35:59 AM: Dear

My daughter has been using Exjade since 27 Nov 2007 to reduce the ferritin level of around 2480 ug/L at that time. Today we just received the latest ferritin test result from the lab, it's 1696. Exjade has reduce her ferritin level from 2480 to 1696 ug/L in 6 weels' time. I am very impressed with Exjade. Her ALT has also dropped to 185 from the earlier 262.

Thank you.

Best Regards

Omega.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Andy Battaglia on January 04, 2008, 04:38:22 AM: Omega,

As always it is good news to hear that your daughter continues to improve. :biggrin What is her daily dose of Exjade?
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 04, 2008, 04:59:49 AM: Thank you Andy.

Her weight is around 26.5kg. She is taking one 500mg tablet once a day. We are following the 20mg/kg as recommended by the Doctor.

Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: §ãJ¡Ð ساجد on January 04, 2008, 05:36:31 AM: Hi Omega,

Good to hear that your daughter is doing nice!

Best wishes for the future!

:goodluck
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 04, 2008, 09:25:19 AM: Thank you Sajid. :biggrin
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Canadian_Family on January 04, 2008, 06:43:56 PM: Nice Going Omega,

My daughter is hopeful to start the Exjade in January 2008, she is 15KG and her last known ferritin was 2400.

I am working things out with the insurance company and hopeful to win the case. Meanwhile, if you can tell any side effects your daughter had or any advise would be great.

Thanks
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 04, 2008, 11:41:09 PM: Dear Canadian Family

We did not encounter any side effect from Exjade but her ALT increased initially and went down after that. The doctor was not sure whether the increase in her ALT was caused by Exjade or other Anti GVHD drug.

Thank you.

Best Regards,

Omega
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on February 12, 2008, 01:05:12 AM: Hi Everyone,

My daughter's latest ferritin result was 1724 ug/L on 12-2-2008 , compared to 1696 ug/L on 3-1-2008. It did not go down as per our expectation. What could be the possible reasons? Initiually we are hoping Exjade would bring her ferritin down in 2 - 3 months but it seems that it would take a longer time now.

Her full blood count yerterday was ok, hb 13.3 (14.2 about a month ago), WBC 8300 (8100) and Platelet 131000 (142000). She is now taking Cellcept, the anti GVHD drug at the minimal level.

Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Andy Battaglia on February 12, 2008, 01:10:15 AM: Hi Omega,

What dose of exjade is your daughter taking and what is her body weight?
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on February 12, 2008, 01:23:38 AM: Hello Andy

My daughter is taking 500mg tablet per day. Her weight is around 25 kg and hence is 20mg / kg. Exjade has reduce her ferritin initially from 2480 to 1696 in 6 weeks' time but the ferritin level stays at around the same level the following 5 weeks. we are just wondering what could be the possible causes. We are reluctant to increase the doses because the drug is very costly here and we are going the perform blood-letting in april this year.

Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Andy Battaglia on February 12, 2008, 01:32:06 AM: The exjade dose would probably have to be 30 mg/kg to cause a faster change. I don't think you should be concerned at all, since she will be starting blood-letting. What I have been told by a woman who had a BMT over 10 years ago is that you shouldn't take a lot of blood at one time, as it will cause too much bone marrow activity if the Hb drops low, which will cause excess iron absorption from food.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on February 12, 2008, 02:06:28 AM: Thank you Andy.

The doctor recommended 20 mg/kg because my daughter is the only one who is taking Exjade in our area. What puzzled me is why the ferritin dropped so fast during the first 6 weeks and then stayed at the same level the following 5 weeks. I know someone who has undergone a BMT 10 years ago still having a ferritin of about 1000 now.

The doctor recommended 200ml of blood would be taken once every 2 weeks. We are thinking to do it once a month. the first session would start on 14-4-2008 together with the re-vaccination.

Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: §ãJ¡Ð ساجد on February 12, 2008, 07:05:49 AM: Hi Omega!

Like Andy said that S.F is not an accurate measure of Iron in body compared to an MRI or Ferriscan etc. So it is possible that initial drop of S.F made room for more S.F to be mobilised from the organs to the Blood stream and that could have resulted in higher S.F reading than expected. This is something like I've been experiencing with Desferal. My S.F has actually gone UP ever since I started taking more desferal than I had been taking previously.

So, I'd recommend you compare her MRI rather than S.F to see if Exjade is actually unloading Iron from the organs.

Best of luck for her future :goodluck
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on February 12, 2008, 09:32:46 AM: Thank you Sajid.

I am confident her ferritin level will drop since she is not transfusion dependant anymore. But I hope the level will come down soon. We might try L1 in the next new months, but it's all depends on what will outcome we will be getting.

Thank you.

Best Regards

Omega.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Hope on February 12, 2008, 04:57:38 PM: Omega,

I am so glad to see that your daughter is recovered well from the BMT. her ferritin will surely and steadily lower with Exjade and blood letting. For Ferritin, you should never look at onr or two readings to determine if it is lower. You need to look at a long time trend to see that overall it is trending downwards. After reading the entire post, I salute you and your family for the perseverance and determination to make your daughter free of transfusion, free of Thalassemia. Hats off to you ! :clap
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on March 22, 2008, 09:57:30 AM: Hello Everyone

Greetings from Malaysia.

My daughter's latest blood test result:

Hb 12.2
WBC 9300
Platelet 143000
ALT 41
Ferritin 1398 (Initial level 2480 in Nov 2007).

She is taking the 5th box of 500mg Exjade for the moment and her dose is 20mg/kg, hence 1 500mg tablet daily.

She has stopped Cellcept, the last anti GVHD drug on 17 March 2008. She is only on IVIG and Bactrim now.

She will be seeing the doctor on 14 Apr 2008. I will keep all of you updated.

Best Regards

Omega.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Zaini on March 22, 2008, 07:03:56 PM: Hi Omega,

Best of luck, i am happy that your daughter is doing so well.

ZAINI.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Manal on March 23, 2008, 12:29:33 AM: You can not imagine, how happy i am for you and your daughter, best of luck always.Please Omega, always update us

Manal
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on April 06, 2008, 07:58:11 AM: Dear All

My daughter went for the IVIG infusion yesterday and also and full blood count. Her hb was 13, WBC 6200 and platelet of 156,000. Everything else were within the normal range. Her ferritin was 971, down from 2480 about 5 months ago with Exjade. We have another box of Exjade to go, and we might stop Exjade and go for monthly blood letting to bring the ferritin down to the normal range. It's quite a heavy financial burden to consume Exjade here. We will be seeing the doctor in a weeks' time and hope we can go as per plan.

Thank you.

Regards
omega.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: §ãJ¡Ð ساجد on April 07, 2008, 05:35:06 AM: Quote from: omega on April 06, 2008, 07:58:11 AM
Her ferritin was 971, down from 2480 about 5 months ago with Exjade.

Wow, that's quite an achievement! :clap

Best wishes for the future.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on April 07, 2008, 05:46:03 AM: Thank you Sajid.

We started Exjade on 28-11-2007, to be exact, it's about 4 months. It's dropping because there is not more transfusion. By mid May, she should complete the sixth box and we will see what's the ferritin level by then.

Thank you.

Best Regards

omega
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on April 17, 2008, 06:09:57 AM: Hi Everyone,

We are back from SJMC for the routine check up My daughter will be starting her first Blood-Letting tomorrow. The doctor recommended once every 2 weeks, 200ml will be taken out each time and glucose will be IV over a period of 4 hour during each session. We are still considering whether to have the Blood Letting once every 2 weeks or once a month. Any advice?

We have also stopped Exjade because, according to the doctor, Exjade should not be taken for ferritin level below 1000(my daughter's ferritin level was is 971, 2 weeks ago) because of possible side effects. Any comment?

Vaccination will also be started tomorrow but at the moment live vaccines such as polio and MMR can not be given to her yet.

Thank you.

Best Regards

omega
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Maako on April 21, 2008, 02:10:23 AM: hi omega,

im from maldives, but i have been living in malaysia for the past 3 years for studies... i havent been arnd much in this site and i just saw ure post.. i am so glad that ure daughter is doing fine after bonemarrow:)

i too go to SJMC for transfusion.. i just wish i saw this earlier, so i cud have visited you when i went there.. am glad that everything is turning out great..

i would like to knw, why is blood-letting is done after bmt?
Title: Re: Unrelated Bone Marrow Transplant.
Post by: §ãJ¡Ð ساجد on April 21, 2008, 05:16:17 AM: Omega,

Best wishes for your daughter's future! :flowers

@ Maako

Blood letting is done to lower the Serum Feritin.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on April 21, 2008, 05:42:37 AM: Thank you All.

200ml of blood was disposed off on 18.4.2008. The Hb dropped from 12.5 to 11.5. The next one schedule on 2.5.2008 but we are still undecided whether to go or not. Perhaps 2-week gap is too close?

Best Regards

omega.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Zaini on April 21, 2008, 11:24:09 AM: Hi Omega,

Ofcourse you'll have to decide about blood letting,but what i think that as your daughter's ferritin is not that high,You can wait for a month,still i am not a doc,So you'll have to decide yourself,why didn't you check the ferritin after blood letting.

ZAINI.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on April 21, 2008, 11:47:10 AM: Hi Zaini
Thank you for your reply.
The doctor recommended once every 2 weeks but we feel that it might be to close. The advantage of doing it every 2 weeks is we will get her ferritin to 300 in a shorter time. We might give it a try and see how it goes.
Thank you.
Best Regards
omega
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Andy Battaglia on April 21, 2008, 03:19:38 PM: Omega,

The only precaution is to make sure the Hb does not drop to the point where the bone marrow activity becomes overactive, as this will increase iron intake from the gut. I would suggest keeping the Hb above 11 at all times.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on April 22, 2008, 02:14:24 AM: Thank you Andy.

Just got my daughter's latest ferritin result, 747 before the blood-letting, drop from 971, 2 weeks ago. I think I will do the blood-letting once a month because I expect the ferritin to drop to the targeted 300 level after another 3-4 sessions. I must say I am surprise with the ferritin level dropping at such speed.

Thank you.

Best Regards

omega.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Andy Battaglia on April 22, 2008, 03:49:20 AM: Omega,

I think that's a good idea. The ferritin dropped enough and there is no sign of excess bone marrow activity. More frequent blood-letting might chance the Hb dropping low enough to cause excess iron absorption. I think you have a good handle on how to manage this. I'm continuously happy to hear these reports.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: rhea on April 22, 2008, 12:09:33 PM: Hi Omega,

My daughter has just been diagnosed with Thalassemia Major. We are from Malaysia. Can we please know the cost of the transplant in SJMC.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on April 22, 2008, 08:32:26 PM: Hi Rhea

I am sorry to hear this.

The transpalnt costs of my daughter in 2006 was around RM 300,000. I presume it should be higher now because the cost of drugs have definately increases over the years. Unrelated transplant usually would cost more because of the costs of treating the GVHD.

Thank you.

Best Regards

omega
Title: Re: Unrelated Bone Marrow Transplant.
Post by: surayya on May 28, 2008, 04:19:45 AM: Hi Omiga,

My nephew is just one year old and he has been diagonised thalassemia major. I want to know , from where you have taken treatment of bone marrow transplatation of your daughter and what outcomes are?

Best wishes for your daughter.:rotfl

Surayya
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Sharmin on May 28, 2008, 04:46:13 AM: Sounds like your daughter is doing well Omega - the ferritin seems to be decreasing. I am very happy for you - I wish your daughter a very bright future!
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on May 28, 2008, 06:34:56 AM: Hi Surrayya

We are in Malaysia. The transplant was done in Subang Jaya Medical Centre. Please let me know if you need more information.

Hi Sharmin

Thank you.

My daughter's current ferritin is around 750 - 800. We expect to her to have a few more phlebotomy before her ferritin drop to the targeted 300. Her hb would dropped by 1 each time post phlebotomy (200ml was taken out). Her last blood count on 16.5.08 was ok, hb 12.5, WBC 6700 and platelet 215000. LTF result was good as well. We were particularly happy to learn that for the very first time in 2 years, her platelet was 215000. We have to said it's not easy to reach this stage because many things happened! We have learned a lot during this 2-year post transplant period!

Thank you.

Best Regards

omega.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: kabir_love on May 29, 2008, 07:59:58 AM: hi omega.
im happy for you that you had passed all this time and future for you is full of happiness. as now we are planning for my son bmt.. as my 2nd child is coming and his hla i hope matches with my son kabir so that he will be a suitalbe donor aswell. but meanwhile im looking for a better place hospital to do the bmt .. and as reading your post your hospital in malaysia give me a lot of confidence so i might consider that also in future. as in inida is not good and i dont want any chances. so lets see.

regs
micky
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on May 29, 2008, 09:56:52 PM: Dear Kabir_love

Wishing you all the best.

Best Regards

omega
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on August 26, 2008, 01:53:47 AM: Hi All

We have done six phlebotomy todate, and the latest ferritin of my daughter is around 450. On average, ferritin has reduced by around 60-70 for each phlebotomy where 200ml of blood was taken out each time. It's not an easy task! We expect 2-3 more sessions to go before reaching the targeted 300.

Thank you.

Best Regards

omega
Title: Re: Unrelated Bone Marrow Transplant.
Post by: §ãJ¡Ð ساجد on August 26, 2008, 11:17:54 AM: Almost there!

Patience and persistence will eventually pay off.

:goodluck
Title: Re: Unrelated Bone Marrow Transplant.
Post by: nanuaru on August 28, 2008, 09:35:26 AM: Hi Omega,
best of luck how is your daughter now hope she has recovereed well. in near future i also wish to get my nanu bmt done .I'll ask for your wishes and blessing then
bye
guilty father of cutiepie
Quote from: omega on November 03, 2006, 01:57:27 AM
Hi All,

It has been more than 6 months from day 0 of the Bone Marrow Transplant. My daughter still taking steriod and other anti-GVHD drugs. The doctor is cutting the drug at a very slow pace in order to control the GVHD. GVHD can caused a lot of problems in Unrelated BMT cases and the drugs used to control GVHD are extremely expensive.

My daughter's blood count is stabalized but not back to the normal level at this stage and it takes time to go back to the normal level. The good news is her HB level is around the region of 13 - 15 and she is not transfused for the past 6 months. Platelet is around 60000 - 80000 at this stage. White blood count is the only one which give us problem and it's around 2100-3000 currently. We are not sure if the drugs my daughter is taking can suppress the white count.

The Bone Marrow has engrafted successfully in this case but the doctor is keeping a close eye on GVHD and other side effects of the drugs. Blood test has to be done weekly to monitor the blood count. Hope will get all this over in 1 or 2 months time. We have been very very stressful from day 0 till today.

Thank you.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on September 23, 2008, 05:40:52 AM: Hi Everyone

My daughter is recovering well and I expect a few more blood letting session to go before her ferritin reach the targeted 300.

I was informed by the hospital that the storage of my daughter's back up bone marrow about 2.5 years ago is expiring soon. I am working whether should I continue to store the back up bone marrow or not. The storage costs is not cheap and therefore I am seeking some advices on this matter.

Thank you very much.

Best Regards,

omega
Title: Re: Unrelated Bone Marrow Transplant.
Post by: nice friend on September 23, 2008, 09:56:43 AM: Hi Omega ,
BEST OF LUCK ... i hope you and your daughter will have better than the best result take care wish you all the best .....
Title: Re: Unrelated Bone Marrow Transplant.
Post by: omega on January 08, 2009, 02:46:28 AM: Happy New Year to Everyone.

I received a good news this morning, my daughter's ferritin result is 185 after the 10th Blood Letting. I have been looking forward to this day for a long long time! No more blood letting!!!

Her blood count is all right. The only problem she has now is her hair grows very slow (she did not shave her hair when the transplant was done) and there are some discolouration on her face (the doctor said it would be permanent).

She will be going to the eye specialist tomorrow and hope she will be fine.

Thank you.

omega.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Sharmin on January 08, 2009, 03:08:29 AM: Omega,

I am very happy to hear that your daughter is doing well and that her ferritin levels have come down. I hope that it is smooth sailing from here for you and your family.

I hope that her eye test goes well :goodluck

Please continue to keep us posted,

Sharmin
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Canadian_Family on January 08, 2009, 02:48:51 PM: Omega,

Nothing happier than this news indeed. I hope your child will continue to do better and it stands for the rest of us as well.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Dori on January 08, 2009, 03:51:51 PM: Hi Omega,

I am happy to hear that your daughter is doing well. Unfortunately, your daughter won't be the first one with discolouration. Though I really hope it will go away (a bit). I hope her eyetest went well!!! :flowers

Dore
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Zaini on January 08, 2009, 06:09:31 PM: Congratulations Omega :hugfriend

Zaini.
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Manal on January 09, 2009, 12:12:18 AM: Omega, congratulations i am really so happy hearing the wonderful news, please keep posting, you are an inspiration, good luck and keep in touch

manal
Title: Re: Unrelated Bone Marrow Transplant.
Post by: nice friend on January 11, 2009, 09:09:40 AM: Hi Omega ,
:congrats for your daughter's results , may she will improve much more in next few weeks ...
best of luck for your daughter ..

Best Regards
Take Care
Umair
Title: Re: Unrelated Bone Marrow Transplant.
Post by: Madhavi on July 09, 2010, 04:08:45 PM: Hi Omega!
Sorry for such a delay in writing in here....
I can imagine what all you have been through....hope all is well now.....and you all are relaxed....
Lots of love to your family,
Madhavi