Hi, my daughter was diagnosed as she just turned 12years old. Its now been 6 months. Just wondering if anyone elses child has been diagnosed around this or close to this age and how it affects them? Shes just been put on disatinib after failing to respond effectivly to imatinib. Everything seems to be going ok at the moment. Theres been a talk of a possible stem cell transplant due to a possibility of bone marrow fibrosis. We are awaiting her bone marrow op in august and then we will be awaiting the results. Has anyone else had this? Or a stem cell transplant? How did it go? Any help advise or thoughts are welcome as we seem to be alone with this condition.
You are here
Help, advice, thoughts.
Categories:
Jenny, sorry to hear about your daughter's diagnosis. There are a few correspondents on here who have had youngsters with CML, but not many as it is principally a condition of the middle aged +. Certainly worth a look at the Teenage Cancer Trust (I am assuming you are in UK - is that right?).
Let us know where she is being seen currently; at that age I would suggest her consultant should at least be in touch with one of the specialist centres listed under Patient Info above. Also any test results, either FISH or BCR/ABL to assess her progress. Did she have any mutation test when she was changed from imatinib to dasatinib?
That's probably enough for now. I hope you will come to feel that there is an experienced community here to help as much as it can.
Alastair
Hi jenny,
I got diagnosed CML at the age of 17. Right now I am 31. It has been almost 14 years I have been under medication and now I am living a normal life and happy married life. I have a son he is now four years old. But, still I have to take medicine.
I also was suggest by my doctor for bone marrow transplant. But he also informed that, even after the transplant it is not sure that it will cure 100% and still I have to continue on medication. So my point of view is to go for medication. Even though doctor look case by case depending upon the test result they make decision.
Going via medication will be tough in the beginning. As, she may have muscles cramp, fatigue and have some digestion problem, may be vomit too.
The most important thing is the will power to overcome it. I was I shock once I came through it and my family had lost hope, because during 2004 it was very difficult and people had not idea regarding CML. Now, the case is different and there are a lot of new research on it.
The first couple of years should be closely under under doctor supervision, once the body is used to the medication. I know she will be able to live a normal life ahead.
Best Wishes,
Shekhar
Yes we are in the uk. We are under birmingham childrens hospital. I have no idea what the numbers are to be honest i wouldnt know how to use them. i just know that shes got a detectable bcr-abl. As i understand her consultant is keen to allow the disatinib to work which is why her next op is in august when she will have been on disatinib for around 6 weeks. They will then compare to her op results from while she was on imatinib. The last results (june) were a detactable bcr-abl at 99% which is why she needed the switch as imatinib only worked to lower the blood counts. From ultrasounds the spleen is now back to normal through the disatinib which i am now hopeful will lower the percentage of the bcr-abl in august. Im glad your getting on with your life Shekhar, and its not defining you. Thankyou for replying! Its a relief to know shes not alone.
No, we chose to stay on medication. It takes time, I think the best option(Medication) to go with rather than going for transplant. It’s good news that the spleen is back to normal. So let’s hope we can find some positive result in Bcr-Abl in coming days. The result will not change dramatically, but gradually. We have already seen positive changes, ultrasound report. She will definitely will be able to overcome all this. Have patient. Best wishes. Thank You!