TPLL - Just Diagnosed
Hi, My first post on here I have just been diagnosed with TPLL and had a bone marrow biopsy today. I am told I will need a bone marrow transplant and it scares me to death but I have spoken to people who have been through a transplant and there is light at the end of the tunnel! I am seeing my consultant On tuesday to agree next steps! Is there anyone that can give me some positive news and anyone who has specifically had my cancer? Would really appreciate the support!
I had a stem cell transplant 3 years ago now when I was 63 years old. I was working and doing a job I really enjoyed, self employed and just working 3 days a week. I was reasonably fit, with a wife and grown up family. We enjoyed a full social life.
A routine blood test picked up low platelet levels, these were checked over a couple of months and at the beginning of 2012 like you had my first bone marrow biopsy. The result of that showed I had bone marrow failure and I was referred from my local hospital to the local cancer centre, The Christie, Manchester.
The diagnosis wasn't the same as yours, but it was a rare blood disorder called hypoplastic myelodyplasia. I'm sure I felt like you are feeling at the moment. I remember vividly my first meeting with my consultant. After introductions and an explanation of the disorder he said to me " Peter there is only one cure and that is a bone marrow transplant". My wife and I were in a sort of a daze, it was so much to take in. By this time my platelet levels were in the low teens and I had to start having platelet transfusion.
We were told at that first meeting a search would get underway for a stem cell donor, test were carried out on my twin sister but we were not a match. Very quickly a donor was found on the Anthony Nolan register and we were so pleased to be told it was a perfect match. A date for transplant was set for May 2012. I took the decision to retire, my wife and I went away for a few days just before transplant. I have three grown up children with their own families and busy lives, but we had their full support.
I'm pleased to say that the transplant has been a success. I can tell you more later about the process if you keep in touch.
You probably have enough to take in at the moment, I am more than happy to share my experiences with you and I think other members will too.
Keep in touch, I have had so many positive outcomes since transplant.
The prospect of a transplant is very daunting and I wish there'd be a resource like this when I had mine almost three years ago. I'm sure you'll find it useful and you are more than welcome to pick the brains of those of us who have gone through the process and come out the other side or those who are currently going through it.
Many of us here have had successful transplants (some even multiple transplants) which I hope will be of some comfort to you and help reduce any anxiety you may have. The treatments these days are excellent and the care you will recieve from your medical team will be second to none. I think the care to people in our situation attracts the absolute best medical and nursing staff you could wish for.
I haven't come across your particular Leukaemia before so had to google it! I had T-Cell Acute Lymphoblastic Leukaemia T-ALL which I guess may have some similarities as it also affects the T-Cells but perhaps in a slightly different way.
As Peter says, do keep in touch and ask questions as you find out more about the course of treatment that is planned for you. We are here to support you through the process as patients who have been there and know how it feels.
There are so many positive stories here and most of us would say that life post transplant is almost as good as it was before becoming ill with minimal long term after effects, certainly from my perspective. You should look forward to a good quality of life afterwards and going into the process with a positive outlook for the future helps to contibute to a positive outcome in my mind.
Please keep us updated and best wishes.