AITL

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that your mum has been diagnosed with AITL (Angioimmunoblastic T-cell lymphoma)

This is such a hard time for you all but from my long years living with my type of T-Cell my team always found the next thing.

We have a number of folks on the Community with AITL and if you put AITL into the Search Tool (top right) you can see all the posts but lets look for the folks to pick up on your post and answer you on your thread.

My T-Cell was a skin version and after years living with it it became very aggressive so had to have R-EPOCH and go straight onto have two Stem Cell Transplants with cells from my brother....... there are other treatment out there and its very important that her team are consulting with the top brains in this area - where is she being treated at?

The choice of the 'next treatment' will revolve around what the biopsy says, how the condition is presenting and how well your mum is to go through further treatments........... with this information her team can move this forward in a positive way. But keep pusher her team for answers to keep them on their toes.

You will see from the AITL information sheet some treatments are mentioned but this will be out of dates as things are changing all the time.

When you get a moment you may want to completed your profile as this really helps others when answering. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine profile by clicking on my username Thehighlander

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be very helpful even if all you want to do is talk with friendly person that can help in lots of ways.

We also have our ‘Ask an Expert’ section but please allow a few days to get an reply.

Keep asking your questions as we are around to help out.

Hi, the best advice we can offer is a step at a time to establish what may be going on and if a biopsy is needed what that tells the medics, if treatment is needed then looking at the options and why one type of treatment may be preferred to another is key as its possible one of the trial drugs may be proposed.

relapse is always a worry and waiting is a pain, however the are no other options at this stage, so try to keep busy and the same for your mum and do things that distract you so you have less time to think about it.

Let us know how it goes and whilst this is a quiet group hopefully someone who has been in a similar position to your mum may see this and reply.

John 

ps you may want to look here, it was set up by T cell experts to support patients and professionals 

http://www.tcllfoundation.org/service/for-patients

Thank you for your reply. I know it's just a waiting game at the moment. 

The website you provided had some really helpful info on clinical trials and I will definitely be asking some questions about what is available here. 

Thanks for your detailed reply. We only got told last Thursday and scan is booked for this Thursday and they hope to arrange the biopsy this week so things are moving. We are based in Exeter and her consultant is very thorough and has booked us in again in 4 weeks when she hopes to have all results and discuss treatment. It's a scary time but comforting to know there are options and clinical trials to consider. 

Here's to keeping positive!