Sarah H
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Angio Immunoblastic T cell Non Hodgkins Lymphoma

Sarah H
Posted by
27 Sep 2014

Three weeks ago I was diagnosed with AITL , a rare type of Non Hodgkins Lymphoma. I remember saying " OK" a lot, when it really wasn't OK! Since then I've had my first lot of CHOP Chemotherapy and know that I will hopefully have a stem cell transplant.

So this is the beginning of my journey and on it with me I take my friends and family, especially my lovely husband, two children and two stepdaughters. That, for me, is the worst bit, I can handle whatever it takes to beat this disease, but seeing their pain and sadness is really hard. I am 41 years young and was first poorly 2 and a half years ago..but at that time no cause was found for my symptoms which put me in hospital for 6 weeks, including several stints in Intensive Care. Having similar symptoms this summer, but much less severe, led to 8 days in hospital and a lymph node biopsy that showed lymphoma..I don't know yet whether I am stage 3 or Stage 4. This week I was in again for 2 days for antibiotics when it looked like I had an infection..fortuanately I didn't, but hey....better safe than sorry. I will beat this!

Comments

06.10.2014

Hi Sarah, 

Thanks so much for being brave enough to share your diagnosis experience so soon after being diagnosed. I had blood cancer (CML) and I remember diagnosis being one of the most difficult times as there is so much to get your head around. You get inundated with information and have so much to absorb at a time when you are understandably not going to be at your most calm or most rational.

It sounds like you've got the right attitude though and that you have an amazing family behind you which will really, really help. You're also not alone. There is lots of support and advice out there to help you and the charity are here to help in any way that we can.

Stay in touch and let us know if there's anything that we can do to help. You've probably been given an awful lot of information booklets already but our section on non-Hodgkin lymphoma is a good starting place if you want to read up a little bit more on everything and what lies ahead:

https://leukaemialymphomaresearch.org.uk/information/lymphoma/non-hodgki...

Thanks again for sharing your story and all the best with the treatment. I've got everything crossed for you that it's a success!

Anonymous
06.10.2014

Thanks Andy...have just had second lot of chemotherapy but bloods were low so having injections to increase white cell production..I hate needles so injecting myself has been difficult but have learnt to do it..either that or the district nurse will come and do it and I want to do it late as night so can go to bed afterwards..they make me ache and feel fluey. with this journey it seems new things are always popping up to test you..you solve one issue and another comes along to challenge but I believe we all have a lot to learn from it and it will make us stronger. xxx

Anonymous
22.10.2014

Hi Sarah - I was dx with AITL just over 2 years ago at age 47. Mine did not respond to treatment, so I had an allogeneic stem cell transplant (bone marrow transplant from donor). So far so good - will be 2 years remission 11/15/14. Best of luck to you and sorry you have to go through this. You can email me if you have questions or want to chat... c warthling (run together) at gmail dot com. Chin up!

Anonymous
23.10.2014

Hi there..I am 41 years old so it is very encouraging for me to hear from you that you are two years in remission..so much of the information about this type of lymphoma is negative..saying it is difficult to treat and that it comes back etc. I am so glad to hear you are well again. I will be having my third lot of chemotherapy tomorrow and then a blood transfusion on Monday..as I am now anaemic..on the positive side my white cell count has improved after the stomach injections. Onward!