My son was dx'd with T cell Lymphoblastic Lymphoma in 2005. He received a SCT in November of 2006 at your facility. By the grace of God he's doing well today. Since we live 1800 miles away we have been doing our follow-up care locally. No one has ever given us any set guidelines on what type of care my son will need in the future being a post transplant patient. Like what types of testing should he receive?, and what should be monitored? I think that when we were released from MD Anderson it would of been helpful to have gotten some type of guidelines. For example; immunizations, were very hard to figure out and get our primary care doctor to do them as he wasn't sure which ones and which dose and such. We still aren't sure if he's had the proper ones. So, a list of immunizations would of been helpful. Also, we were told that the first year after transplant was the most crucial with my son's type of disease and he has been in remission for 2 1/2 years now. What do you expect is a probable prognosis from this point? I just want to say that we had some great cancer facilities closer to home but opted to go to MDA even though it was very far. I will never regret our decision, my son today is a full time student again, works full time and has a wonderful girlfriend. I am and always be thankful to MDA for this.
I am glad to hear your son is doing so well.He should have regular follow-up with a comprehensive survivorship clinic to avoid some of the issues you have faced.WE have a Survivorship Clinic in Pediatrics that sees patients of all ages.MD Anderson is in the process of developing a Survivorship Program for all of our patients because we have recognized many others face the same hurdles you have.Most pediatric oncology programs have comprehensive survivor clinics so you should be able to find one closer to you if you do not want to travel back to MD Anderson
The Children's Oncology Group has published guidelines (http://www.survivorshipguidelines.org) on the care of cancer survivors based on the type of therapy they received.A survivorship clinic will go through these guidelines and establish a plan of care for your son, which will include the tests and monitoring he will need, as well as how frequently they should be performed.Sometimes patients will go to a survivorship clinic a few times to get the care plan establish and then transfer their care back to the primary care physician.It is particularly important for transplant patients to have a care plan developed as they are at risk of developing several complications later in life.Your transplant doctor or nurse should be able to give you a list of the immunizations your son needs.
Another resource for your son is www.livestrong.org where he can find survivorship worksheets and a guidebook under the cancer support tab.They are publishing a new improved version of the guidebooks which will be available later this summer.
I can't say much about your son's prognosis based on the information you gave me, but in general the longer he remains in remission the more likely he is to be cured.I am so glad to hear he is doing so well in so many aspects of his life.