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
Hi @Paul
How did you get on with your worries. I have just found this forum. Diagnosed 2.5 months ago with AITL and have had 4 CHOP. Having CT scan this week to find out if it chemo sensitive.
Hard to find others with AITL.
Liz
Hi @stunned I am so glad that you have found us and I am glad that you have found someone else with AITL, but luckily you have joined our forum family as the question you ask actually many of us can share their experiences on.
I often say that my thoughts and emotions have been on high alert since I was diagnosed, with another blood cancer, 20 yrs ago.
However the shock has subsided, but it did take time.
When I was diagnosed I came home and wrote my will and funeral music.
The Blood Cancer UK support line is there for you on 0808 2080 888
I actually benefitted from some talking therapy through my GP
I would say just be very kind to yourself and give yourself time, you have had a great shock, you have reached out for help by having the courage to post on here.
Please do keep posting as I look forward to hearing more about you.
Hi Liz, I’m good thanks. I’ve not relapsed and have got past the year 3 since the Stem Cell Transplant. I still worry at times but I think that’s pretty normal. It’s tough doing Chop and a Stem cell transplant but I’m really glad I did. Just remember that everyday after treatment you will feel better. The body’s ability to repair itself is amazing. I was back working full time 6 weeks after the Stem cell transplant. I hope your treatment goes smoothly and please do ask me anything you want. Happy to help if I can. Paul
Hi @Paul great to hear from you again with your update.
I am sure it will help others,
Really be kind to yourself and take lots of care.
Thanks Paul. For your update. This ended up in my junk folder so I hadn’t noticed it. Your words are very encouraging. How long did you wait between CHOP and your Stem Cell transplant?
You are the AITL long term survivor I have been in contact with. Very encouraging.
How long were you in hospital for stem cell, and isolation after that?
I hope I can go back to work.
Thanks
Liz
No worries re being junked! I think I had month or two before the Stem cell transplant as my hair was growing back. I went into remission quite early during CHOP.
I was really unsure about having the Stem cell transplant but spoke to a friend of a friend who’d had it and they reassured me. The Stem cell transplant wasn’t as scary as I was expecting. I was treated in ambulatory care in a nearby hotel for about 10 days then was admitted for about 2 weeks. The first few days of that was tough but bearable. The care at UCH was great but the food is virtually inedible (even for someone in good health), so make sure someone brings you whatever you can manage. Homemade cake, ice cream and those nutrient shakes were all I had really. Try out some shakes before you go and find a couple you like. I had the Stem cell transplant in November and went back to work full time remotely in January. Just see how you feel. The body’s ability to recover is astounding. My ‘friend of a friend’ is about 7 years post Stem cell transplant and another is about the same. I don’t have any permanent side effects and don’t take any medication. Best of luck, Paul
I should have posted this a couple of weeks ago. Has been a busy time with Xmas and NY’s.
My CT scan after 4 rounds of R-CHOP showed a complete response - so treatment is continuing. Drs wanted to determine that it is chemo sensitive. I have had #5, and will have #6 in a couple of weeks.
We were so happy with this news.
It doesn’t mean cure, remission or anything - but it means we keep going cause it seems to be working.
Oh @stunned thanks so much for the update, yes, it sounds a step in the right direction to me.
Please do keep updating us and really look after and be kind to yourself
Hi there … special Hi to @Paul
I am scheduled for autologous stem cell transplant on 12th with Day 0 on the 17th. Will be having BEAM conditioning. I am trying not to think about it all and focus on how good it will be on the other side with my life back.
Am in remission from AITL lymphoma thanks to R CHOP but they have told me it will come back and this is a sweet spot time to get ahead of it regrouping.
Would love to hear from any other AITL survivors…
Liz
Hi @stunned just to let you know that I will be thinking of you.
It would be really hard for me not to think about it all, perhaps try and take one day at a time and really be very kind to yourself and please let us know how you are getting on
I hope it goes well and remember when you feel at your must rubbish that with every day that passes, you’re going to feel better. Paul
I have another T Cell Lymphoma called Mycosis Fungoides and I think that alongside AITL and Large Cell Anaplastic they are the 3 most common of the T Cell Lymphomas although all 3 are very uncommon as Lymphoma goes .I had a Stem Cell Transplant in December 2024 otherwise they thought that I would be unlikely to survive more than 5 years and so far so good although some small lesions have developed and I get bad headaches about 2 days a week which might be due to the medications? Although i have recently had a CT Scan for the brain to check the Mycosis Fungoides hasn’t infiltrated it and awaiting results.
Hi @Kevan7 I believe in notifying my specialist nurse or medical team about any symptom that appears.
Please do let us know how you get on.
Really look after and be very kind to yourself
I was meant to go to hospital today but they made a mistake with the appointment and now I am going on Monday however I asked them about the brain CT Scan results and they said it is clear of any lesions.I was sort of expecting that as I’m guessing that with brain cancer you’d probably have fits and confusion as well as headaches and I only had headaches.I have read about people with Glioblastoma and usually fits and the like are mentioned so I speculate that other ones which metastasized there produce similar unpleasant things.