Bmt

My 10 year old daughter, Lauren, was diagnosed with CML this past September. I was told that she would need a BMT, I have no other children therefore she will need an URD. I was told of two methods to prepare the body prior to transplant, full body radiation or a new method, photoferesis. Has anyone heard of this method or anyone that has went through it? I just don't know what to do. They both sound scarey. Help.

Hi Cindy
a BMT is the only cure for CML. Drugs and chemo may be used but generally the CML comes back. Great results have been obtained with BMT in CML. The types of BMT include autologous (your own cells), allogenic ( a sibling) or a unrelated donor. The problem with UD is a complication called Graft vs Host disease where the bone marrow that was used attacks the body because it wasnt a perfect match. GvHD disease can be a major problem, even fatal. The preparation the body needs is to get rid of all existing cancer cells. This could be chemo or radiation. Once that is done, then the BMT can take place.
Talk with the docs and explore all the options. Lauren should do well.
God bless.

Hi,
My name is Mary and I am 45. I was diagnosed with cml in August of 2005. I started Gleevec, 400 mg immediately. I have had many side effects. Swelling ankles and eyes, rashes, nausea, and such aching bones and exhaustion. The doctors feel that I am responding to Gleevec very well. They have told me that the longer I am on Gleevec that the riskier the BMT is. I have one sibling and she has not been tested yet. I wonder if anyone has heard the same thing about staying on Gleevec and what the long term ramifications of Gleevec are? Right now it seems like Gleevec is the easiest and best thing. I sure am thinking and praying for you and your daughter. It is all so shocking and I think it is easier for me to have the leukemia and accept it than to have had my children or husband have had it. I will have you in my prayers daily and be watching for new information and passing any new information along.

Mary,
Thank you so much for your response and prayers, you shall be added to ours. I haven't heard much about the long term effects of Gleevec, but our docs did tell us that it is best to have the BMT in the 1st year of diagnosis.I also know that the longer you are on Gleevec, the higher the dosage. My daughter, Lauren, has had problems with swelling ankles but not so much lately. She continues to have aching bones and exhaustion. I wish I could take her pain away, I would give anything to trade places with her. She is a trooper for the most part, she is probably handling it better than I would. She continues to go to school and stay in her extra activities the best she can. I hope all goes well for the both of you.

Hello, Cindy. So sorry that your dear Lauren is ill. My husband was diagnosed april 04 and stayed in Gleevec 400 for 18 months. Now they increased to 600, but at long last he decided to undergo Bmt in short. I can imagine how hard it must be for you, children hurt a lot but probably and fortunately they don't suffer as much as we do. Mine are 10 and 12, two boys.
I read in many places that BMT is more succesful the younger you are and the sooner you do it. I suppose you don't have a perfect match donor for her(a sibling is the best, but if there isn't, stop thinking about this possibility). Then I suppose docs should be looking for an unrelated donor. This will most probably work beacause she's a child 0nly 19 years). It will be hard but it will pass and you'll forget the nightmare. If there's a cure BMT is the only way.
I teach maths, I have a pupil 15 years old with CML for long, she had a BMT from an unrelated donor several years ago. Then, at some stage, illness reappeared. She's now on Gleevec 400 and doing well. Her bad cells have dissapeared and the donor's good cells have come again. Doesn't sound like a miracle!
Try BMT, if it doesn't work, you'll always have Gleevec. But do thint it will work. You and your Lauren will win. This is my opinion.
I'll keep you in my prayers and love to your dear Lauren, strength and faith for yourself. Alicia.

Hello, Mary. I wrote a long message and lost it. Here Itry again. My 39 year old husband was diagnosed april 04 and stayed in Gleevec 400 for 18 months. Then he became resistent and CML reappeared. He's now on 600. Until when will it work? If it fails, 800 and then perhaps trying another drug.(AMN107 still not in market). Only 15% people become resistent to Gleevec. You can find Jeff's story at the message board CML Gleevec. The story of this medicine is too short, perhaps 4 years. Not enough to know what will happen, only we it just can keep illness under control but not cure. Side effects are varied and similar (swallen ankles, puffy eyes, bone pain, stomach aches and disorders, tiredness, ...)
Fortunately for us, my husband has a perfect match sibling (one of his brothers). From the beggining I clearly saw that BMT was the best and as soon as possible, but the doctor was not so keen and scared my poor husband with the hardness of the process. One of docs' main duty is to tell people they will most probably have the worst complications, dangers, pain and even death. They need no complaints afterwards.
It's very easy to take the pills and give them to my husband, no hospital, all the family thiks he's OK, and he looks so, but I hate this uncertainty. Thank God some light came into his mind and although Gleevec 600 is working OK, he deciced at last to undergo BMT in short.
About you, I can't beleive your sister hasn't done the test yet to see if she's a donor. They will only take a blood sample from her. Don't wait, you're 45. If she's a perfect match donor I would do the BMT right now. If not I'd stay on Gleevec and pray that you are on the 85% for whose Gleevec does not work after a few years.
Of course this is my own opinion. You now better, discuss with your docs and family, decide soon, and don't look back. I'llkeep you in my prayers. Alicia.

Hi. Thank you so much for your prayers, your husband will be in ours. Lauren, whose 10 years old, is still awaiting a donor. I will find out more on the 3rd. She's doing ok with side effects here and there, of course some days are better than others. It is a scarey procedure to think of the BMT because of all the complications, especially since she has to go through it with an unrelated donor. There are many complications and docs tell you them all. They seem positive because my daughter is only 10, but I am still frantic. I know that this is the only cure, but fear all my daughter will have to go through at such a young age. She is so smart and knows all about her CML, and for the most part takes it very well. There are breakdowns and sometimes I feel I can't handle them. I don't know what to say to her. CML is so rare in children and she doesn't understand why she is the one in a million. Her spirits are up for the most part, but I don't know how she will be preparing for the BMT. I wish your husband the absolute best in fighting this horrible disease. It saddens me that so many people have to go through what I have to.

Alispain,
I was just wondering how your husband was doing. Did he ever have the BMT? My now 11 year old, Lauren, just had a bone marrow bio and we are awaiting the results. Her docs may not do the BMT, and have her stay on Gleevec. I just would like to know how things are going for you and your family.
Cindy
cyndship

Dear Cindy, my dear husband is recovering from his BMT. He went to hospital on March 13th and stayed alone during all the process. I could have been with him but he decided I should stay wih our children. He came out on April12th (Holy wednesday). He was weak and sad, he had suffeered. I could see him every day and talk to him through a glass but could not approach him. it was a hard month. Then he had two minor complications (one of them drove him to hospital again for a week) but on the whole he's now beggining to feel stronger and very happy, full of life. As far as now his BMT has been a success. For us it was the best decission.
For your dear Lauren I don't know. She's the same age as my younger boy. I can feel your sorrow. I wonder if Cindy's dad is with you (excuse me, I just think that you need support for yourself).
Did you get an unrelated donor? I hope you do. Although BMT is hard and dangerous, it's the only cure. It's painful and sad or whatever (time goes by) but then, she'll be free from illness.
Feel free to ask whatever you may need. I pray for you and your dear Lauren. Love from Alicia.

Alicia,
I am glad that your husband is doing well. I hope my daughter is as lucky. She does have an unrelated donor available, but chances of survival are not as good as a related donor. We are still waiting for her bone marrow biopsy which will determine if she will have her transplant this summer. I am not sure what to do. I am terrified. I am at the point where I am willing to take my chances and have another child in hope it will be a match for Lauren. Your husband had a sibling match, right? Which method of transplant did your husband have? I am sure your children are grateful that you were there for them and your husband understands how important and hard that decision must have been on you. I am happy for you and your family and I hope he continues to do well.
Cindy