A very warm welcome to everyone who joined us over the past month. We are so sorry that you had to find us but you have found a supportive place where we all understand what this cancer journey is like.
We are a rather exclusive group of people and with that brings a lack of knowledge and information so this forum could be invaluable to everyone on their T-Cell journey. So recording your first hand life experience living with a T-Cell condition is so important regardless of how small that information is.
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We are always around to help as best as we can.
Hello,
i am waiting on blood tests (she done as many as poss) and an mri scan of my head /mouth area. I’ve not been right for afew months starting with a black/purple legion I got removed from my leg 3 weeks ago which just appeared overnight, and still waiting for results. Since then I’ve had a lot of bruising come up on my legs and been referred to a Hematologist. Who actually wasn’t too concerned about my bruising it was the roof of my mouth being blue in colour with quite afew white lesions there so is a suspicion of lymphoma, and is why I’m getting the mri scan. Also I’ve read that with T cell lymphoma you can lose some of your eyebrow out of the blue which I did about ten or so years ago but I thought was strange at the time but didn’t think too much of it. But I wonder if it started all that time again ago has caused the lesion on my leg, maybe the bruises on my body which didn’t hurt like normal bruises, and now spread to my mouth?
any ideas would be grateful as I’m really worried 
Thank you
claz
Hi Claz, sorry to see you are on the diagnosis merry go round.
Not knowing what is going on is so stressful and I can truly understand why you are worried and I also see you also posted in our Melanoma Group as well..... a sign that you want answers.
Some types of T-Cell Lymphomas are rather rare skin conditions and nothing like skin cancers as you can't cut these out. With this comes the difficulty of getting to the truth.
The only clear way a T-Cell Lymphoma can be diagnosed is through a biopsy where the pathology results will say yes or no. Scans can also be used to see if there is any activity in the body including in the Lymphatic system.
Even although my Dermatologist had a hunch what I had it did take a further 12 months, a few CT scans and 6 biopsies to get to the truth......... so I just can't make any comment other then you need to keep working with your medical professionals to get the answers.
But be encouraged, the fact that you have been referred to a Haematologist is a big positive as this is a step in the right direction.
Blood cancers like T-Cell will not show up in any blood test - sound bizarre, but it just does not as the bad cells living and develop in the skin. Lymphoma Action is a good place for information.
You will see from my profile that it took 14 year before I needed to have any full on treatment, yes those first 14 years had hard times but it was ok.
You need to keep your pointy elbows into the doors of your professionals to keep them looking for answers......... but keep away from Dr Google - it is not a healthy place to get information.
Always around to listen..... ((hugs))
Hello,
thank you soo much for responding. I’ve had a head mri scan (for white lesions in my mouth / blue hard palate) and a CT body scan (for the bruising and itching) and more bloodtests as polycythaemia came up in the first round of bloodtests. I’m hoping the scans show something up as I’ve not got a sore area just below my ribs that feel bumpy, but will wait until I see the Hematologist on Wednesday
thank you very much for responding as I feel soo alone and scared
ive read your story and why a journey you have been on and have battled it, well done to you I wish I was that strong 
claz
Hi again Claz,
Good to hear that you are making progress and make sure you have ALL your medical issues/challenges on paper and ALL the questions you need answers for put together before you go to your Heamatology Appointment.
I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear. I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.
Come back once you have more info.
Good morning Claz, first very good news that both your CT and MRI scan came back all clear..... the contrast is rather weird!!
You are correct that MF will not show up on any scans unless it has went into Lymph-nodes etc...... and it will not show up in blood tests. The only way to diagnose MF is a biopsy and the resulting pathology.
But remember, MF for some can be seen as a long term chronic illness and people do live all their lives with it.
Its good that you are now being tested for other blood disorders, there are a lot and the high percentage are not cancer but again a long term chronic illness.
Did your consultant mention Polycythaemia or have you been talking to Dr Google?........ PV Is a rare condition affecting the bone marrow where our blood cells are made. In PV there are too many red blood cells, making the blood thick.
People with PV often have no symptoms. Sometimes your spleen may grow in size due to trying to break down too many red blood cells.
PV is diagnosed using different blood tests, an ultrasound scan or a bone marrow sample. This is when a sample of bone marrow cells is taken from your back or hip bone. It will then be looked at under a microscope by a doctor.
If you have no symptoms, you may not need treatment straight away. If you do have symptoms, the main treatment for PV is venesection (drawing some blood) as this reduces the number of red blood cells.
We are always around to help out.
((hugs))
Just to reassure you it took 14 years before I had to have any full on treatments.
The phrase ‘take each day as it comes’ is rather important mindset to have in this.
Lets see what the results say then a plan can be put together.
((hugs))
