I had a stem cell transplant in November 2021 after being diagnosed with Angioimmunoblastic T-Cell Lymphoma. Recently I suffered severe bruising after moving house - not just the odd bruise to be expected. My lymphocytes, nucleophiles and red blood count are all low and have decreased since a blood test at Christmas. I have increasing pain in my joints (an early symptom of AITL) weight loss and bouts of headaches & nausea. I had a PET scan last week which was clear. I am pretty sure however this is the onset of a relapse. The same happened before I was first diagnosed. The consultant relied entirely on a clear punch biopsy to say I didn’t have lymphoma. I insisted on a full biopsy which resulted in a diagnosis. I may of course be wrong but feel there are a an over reliance on individual results of tests/scans and a ‘computer says no’ attitude, rather than listening to the patient and taking a holistic view. I guess all I can do now is wait and watch to see if my lymph nodes swell which followed the same symptoms last time.
Dear @Paul
Thank you for posting and I am very sorry to hear you are going through such a worrying time. It is understandable that you are mindful of your symptoms particularly after your previous experience and significant treatment pathway.
May I ask whether you have a Clinical Nurse Specialist you can call to discuss your worries with? I only suggest this as they would be working closely with your Consultant so can relay your concerns and apply the holistic approach that you mention?
Do you have any other symptoms to speak of, for instance signs of infection? It is important to rule out other causes whilst still having your previous diagnosis in mind.
If you would like to talk this through with us please do give us a call: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Hi @Paul I jus wanted to say that @GemmaBloodCancerUK has given you a good response.
I think it is natural to be anxious especially after you are experiencing similar symptoms that you have experienced before.
I think it is reasonable to contact your medical team with your concerns again.
Please do keep posting how you are.
Take care of yourself
Thanks Gemma. It’s difficult as the consultant is objective whereas I have the fear attached to relapse which may affect my judgement. I think I will wait a couple of weeks and if the joint pains etc don’t improve I will ask to speak to my usual consultant who wasn’t available this week.
Hi Erica, yes Gemma was very helpful. I forgot to hit reply until just now. I feel a bit like I’m being gaslit for being neurotic. The consultant told me to go to my GP?! AITL is rare and has very specific onset symptoms. Last time this aching and pain in my joints came first then my lymph nodes all swelled. It feels exactly the same. I’ve lost about two kilos since Christmas. I’m conscious that by waiting, as it is an aggressive cancer and will advance quickly, it will become less treatable. I think I will email my usual consultant when she’s back from leave next week and will let you know how I get on. Much thanks, Paul
That sounds like a good plan @Paul.
I have to write all my fears and questions down and all my symptoms that are worrying me with how long I have had them, their severity etc.
Perhaps the consultant referred you to your GP as they did not think they were AITL related and that your GP can test you for other conditions with your symptoms to rule them in or out. I do not know I am not a medical person.
We are very complex beings
The main thing is you do update us as and when.
Look after yourself is the main thing