Hi WNAI like you I got diagnosed with Angioimmunoblastic T cell in September 2023 I have just finished my chemotherapy in December I had my stem cells harvested ready for transplant.I had a PET CT scan done on the 19/01/2024 and about to discuss the results with the consultant today .
I just wanted to say any information I can help you with please ask
You have asked about angioimmunoblastic T-cell lymphoma ( AITL). I wasn't sure of your exact situation if you were asking for yourself or someone on their behalf.
As you probably know AITL is a type of non-Hodgkin lymphoma (NHL) You may have seen this already, we do have information about AITL on our website here which talks about what it is and how it is treated. There is mention of some new drugs that are being researched for this particular type of lymphoma. You may find it helpful to read alongside our general information about NHL here.
We do have general information about clinical trials and how they work along with a trials database that lists trials that we have been permitted to put onto our website here. This link will take you to the NHL clinical trials. We are not directly involved with the trials or the recruitment of people on to the trials it has to be a doctor to the doctor in charge of the trial. If you do see a trial you are interested in have a chat with your specialist or nurse specialist (CNS) and they will tell you if you might be eligible.
Lymphoma Action has information about AITL on the website, how it is treated, and research into newer treatments. By clicking on this link this will take you to their trials database.
You may be aware that AITL, is a less common type of NHL and you may be interested to know that Lymphoma Action has rare lymphoma support online meetings. You can find out more here.
I hope this reply is helpful. Please get back to us if you need any more information or support. You may find it helpful to talk things through with one of the nurses on our helpline. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.
Good morning, I was diagnosed, via needle biopsy, in January 2022. I understand that due to the rarity of this type of cancer there are no trials as there is an insufficient number of participants available?
I have tried to read, from the links in your reply, about newer treatments but to no avail. Please could you provide me with some more information?
Hi Jemma I did the same research as you on trials and because there is on average only 146 cases reported per year across the UK, I couldn’t find anything seems to be linked to the Epstein Barr virus. Not sure where you are on the AITL path or what treatment your having or had but seems to follow the same path of CHOP and Autoglous stem cell transplant. From what I have read is allogenic is more successful but has a higher risk and costs the NHS more so on most cases for people over a certain age a auto is the only option available . There is also a treatment called CAR T that your own cells are modified to recognise the cancer cells in the blood , I wish you well
I have looked at the links that Nurse Jemma has provided and I am not sure how much more I can add. There is a rare lymphoma support meeting run by Lymphoma Action on the 14th and 21st February and it might be supportive and informative to hear from others in a similar situation. Here is the linkagain
Your haematology team are the best people to answer your queries about what treatments you can have. They have all your medical details and know what treatment you have had in the past based on your age and your general health.
It is frustrating when you are diagnosed with a rare cancer with very few or no trials that you may be eligible for. I am not sure where you are being treated but you could also ask for a second opinion if that is something that you would like to consider. We have information about how you go about getting a second opinion here
CAR-T cell therapy as mentioned by the member on the forum is available for some types of lymphoma but it is quite a complextreatment and the numbers of patients that have it are still quite small. We do have some information on this treatment on our websitehere.
The Rare Diseases Organisation also known as NORD has some information on this condition which you can see here
I have found one study from the website Be Part of Research which you can seehere
Trials are often quite difficult to join as they have strict entry requirements that you would have to meet in order to take part. If you have recently had chemo or if you are in the middle of treatment this may make you ineligible.
Do ask your team of haematologists as they are often aware of clinical trials. In order to enter any trial you would need to be referred by your own doctor to the doctor running the trial.
You are very welcome to ring and chat through any of this with one of the helpline nurses.
We are here Monday to Friday 9 am to 5 pm and our number is freephone 0808 800 4040.
Hi I first had CHOP the side effects was hair loss constipation excessive urination only on day 2 to 7
The Beam Chemo before stem transplant made me feel sick and effected my throat on the day I had the last part (M) of the BEAM I was eating ice lollies to counteract
