TPLL

[Littlenanna]

Hi

I'm from Australia and have been diagnosed with Tcell prolymphacytic leukaemia and wondering if anyone here has it. I'm on watch and wait ATM. Diagnosed a month ago due to inconsistent white blood cell counts.

[liggo]

I have this same strain, I was diagnosed two years ago almost to the day, mine must have been so advanced that I was having untold number of Blood and Platelet transfusions from the first day. Eventually when they had diagnosed it I went straight onto an intensive course of Chemo with the drug Campath, three times a week for eighteen weeks. I have been in remission now since the end of January 2016, and now in the watch and wait situation. If there is anything that you want to know about my situation please ask.

[Littlenanna in reply to liggo]

I guess I'm just scared and unsure of my future. I appreciate your reply to my post. Were you started on treatment straight away. My CT scan was all good with no enlarged lymph nodes or internal organs. I go back on 19th September for a monthly review. My first of many

[liggo in reply to Littlenanna]

i would imagine that we are all the same about our future, but just live for today and remain positive. I was a tremendous shock to me. I had an enlarged Lymph node in my neck, which was removed to assist in the diagnosis and several small ones in various places. As I said mine was further advanced so I went straight onto Chemo. The problem was that I was in the dark unknown with no one telling me what to expect etc. Thankfully the chemo worked for the time being and I have been in remission for the last eighteen months. I am on watch and wait.Try not to worry about it and remain positive at all cost, I am back on the 26th and hope for a good result. My biggest problem is with Platelets which were in single figures and have never been higher than 85, but I am enjoying life, I wish you all the very best and will always reply to you so if I can help please ask.

[Littlenanna]

Do you have the night sweats?

[liggo in reply to Littlenanna]

I have always sweated very easily but don't remember any particular night sweats to cause concern. One of the first things I noticed were small red spots on my ancles and shin, I think it is called Petechia, but was not too concerned for several months. Other than that I didn't notice any symptoms, until I got short of breath on excersize.

[Littlenanna in reply to liggo]

Thank you.

[Littlenanna]

How long after diagnosis did you start treatment. I go back to see haemotologist tomorrow for follow up

[liggo]

I was admitted to our local Hospital after feeling unwell, in the middle of August, after numerous blood and Platelet transfusions I was released the following week whilst tests were concluded, I continued as an out patient until the end of September, when the tests and diagnosis were complete, I went straight into treatment, once they knew which type of Chemo presumably. That went on for eighteen weeks , three times each week, all as an outpatient.

Sorry I haven't replied earlier but I don't seem to get notifications when you have replied. Hope all is going well for you.

[Littlenanna]

Was that August this year? I go back in 3 months

[liggo in reply to Littlenanna]

August 2015, I still don't get notifications when you reply, but have the right settings.