Hi everyone, diagnosed yesterday with Chronic TPLL and I’m going between being terrified and being in denial. My doc has said he’s 95% sure and has taken more bloods. I’ll have the results in 2 weeks. I also got a skin biopsy as he’s convinced it’s been presenting in my skin for about 5 years and only recently in the blood. Enlarged lymphoma glands in various places too. I’ve not yet told my family as I’m clinging on to this 5% but he’s talking Campath and then a bone marrow transplant.
EEEEK!
But I feel well?
Hi a and welcome to our little corner of the Community but so sorry to see you finding us.
I see you are in Glasgow, although I am in Inverness I was treated in The Beatson for both my Stem Cell Transplants - the last one was over 41/2 years back and I am doing great so be encouraged.
T-Cell Prolymphocytic Leukaemia, T-PLL like other types of T-Cell Blood Cancers can be rare and aggressive but are treatable. We have had a few over the years so lets see if anyone is looking in.
I had CTCL a skin Lymphoma - its a very long story so hit my community name to see it - the main thing to remember is that my journey was rather unusual.
Campath (Alemtuzumab) is indeed often used as a precursor for going into Stem Cell Transplant but as you say, its not yet a forgone conclusion so every detail needs to be put in place before this can be moved forward.
Tell us more about what you have been told.
Hi again Louise, blood cancers, especially rare types can be very hard to get the truth.
You will see in my profile that my Dermatologist was 99% sure about what I had...... but it did take a year, a few CTs, lots of bloods (important to note that in all my 20 years nothing highlighting cancer ever showed) and 6 biopsies were needed to find the truth.
Have you had a CT scan? as this along with a biopsy is the only way to get a clear diagnosis.
Where are you being seen? QE, Beatson....?
Hi Louise - we all do what we need to do to get through this.
Your diagnosis journey is unfortunately normal for skin blood cancers and I have talked with many people who have experienced the same challenges in getting a clear answer.
One of the Beatson Stem Cell Transplant team had some background in treating skin blood cancers so it was good to have a Heamatology view along with my very good Dermatologist. This was a good foundation for helping get a plan put together.
My case was also put out for review across the country to other experts to help make sure we had the best plan available at the time and indeed I did go see a skin specialist in Newcastle to make sure we were covering all the bases.
Have you had a Bone Marrow Biopsy?
There is another person in Inverness with the same type of rare NHL that I have and has been following the same treatment journey and he is doing great.
Make sure you get clear information that you understand and with this you can move forward with a clear understanding of why the plan is being proposed.
Just to add, we have had a number of folks having Campath as part of their preparations for going into Stem Cell Transplant (SCT).
We actually have a dedicated Stem Cell Transplant group so you may want to join the group and put up a post and introduce yourself to the group as this will open you up to more people and yes you will see me in this groups as well.
This LINK will give you some basic information about SCT - this falls into two types. I had an Allo (Allogenic) SCT with donor Stem Cells from my brother as my team could not get me in remission to be able to go through an Auto (Autologous) SCT using stem cells that are collected from the patient's blood and then reintroduced after treatment to get rid of the cancerous cells.
Lots of questions but we will do our best to give you some answers.
