Angioimmunoblastic T-Cell lymphoma

Hi Bob's wife, sorry to read about your husband he has had a lot to deal with here is a link to some information that may help if you don't know a lot about this type of lymphoma. 

https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma-t-cell-lymphomas/angioimmunoblastic-t-cell-lymphoma-aitl-and

You will see from the above page that the is also a follicular version of this type of lymphoma so may be worth ask if the is a link to his previous diseases. It sounds like he could be on GEM-P which you will see part way down the page, and we have had a number of people post who have been on this treatment over the last 2 to 3 years when their lymphoma has relapsed and they were trying to get to the stage where they were clear to have a stem cell transplant. Some found the treatment tough and it sounds like it and the disease are causing some issues for your husband, but it also sounds like they are doing everything you would expect to help him at this stage in treatment. 

Not many people post in the T cell group, but lets see if other AITL patients see it and reply and Mike @Thehighlander who is a community champion had a T cell lymphoma and he will reply when he see it.

Hope this helps

john

Hi and welcome to this rather exclusive area of the Community and great to see that John has given you some great help. Sorry for taking so long to answer but I am actually on holiday.

There have been a few folks through the Community who live with AITL. I have no first hand experience and have not meet anyone face to face with this version of T-Cell but if you put AITL into the search tool near the top you will pick up on their stories....some are ongoing but others are not so great. 

The challenge living with a rare type of T-Cell is the lack of research and treatment but let’s look for his team to find the very best way forward by putting his case out to cancer experts around the UK and abroad

There is an ongoing post recently, if you go to the top of your post you will see the discussions tab, click on it and have a look through the post headings, you can put a reply to any of the posts by hitting the reply button.

By hitting our forum names like johnr and Thehighlander you can see our stories. For me part of my treatment required lots of blood transfusions, the battle in the blood and the bone marrow is hard to control so this can be a normal part of the journey.

Keep asking your questions and we will do our best to help out.

Hello John

Many thanks for your reply he is definitely on GemCis he had R chop for the previous lymphoma. Last night he was admitted for an infection following a blood transfusion and platelets I am very diligent on his temperatures etc and told the nurse that 37.2 is high for him and he probably has a fever before he was given blood and later when they finished the transfusion 4 hrs after the nurse said he could go home with a 37.7 temperature which i said NO! later after 30mis became 38C and things then kicked in plus he began to develop a rash. I am telling this story because we have to listen to our instincts and as his carer i know my husband and when things arent right and insist that things are not dismissed. So many thanks for the link. Prior to the lymphoma he had treatment for Prostate cancer which involved 8 weeks of radiotherapy which i think is where the lymphoma came from although the doctors say no not possible! Never had much illness before that in his life.  It has been extremely hard this time as he fell ill very quickly with this form of the disease and has obviously been complicated by his emergency and very difficult stomach operation. He is a fighter though and wants to get through this treatment so i support him as best I can. Best Wishes

Hello The highlander

Thanks for the info the blood and platelets management seems quite relentless but they do make him feel a little better. The rareity of his disease is a problem and he is an unusual case so hopefully there may be a trial for him if this chemo has the desired effect.

Enjoy your holiday

All the Best 

Keep hanging in there. At the best of times Lymphoma can be complicated to treat but with other medical issues going on it’s just that much harder.

Good on you standing your ground. My team always say that the people who know the patients body best are the family and patients themselves.

((hugs))

Hi thanks for the reply, and just a thought if it has not been discussed, after some types of chemotherapy patients have to be given irradiated blood products so as to reduce or eliminate the chances of picking up an infection, it may be time to ask that he only receives irradiated products. In addition the GemCis will also be wiping out his immune system so as you will know his venerability level is high and you would think the nurse would have understood this.

Hope things settle and he gets on the road to recovery

John 

Hi John

Many thanks yes the blood products are iiadiated they do check that before they give it. Yes its a double whammy as his bonemarrow is infected it was very hard to stabalize his blood before the operation and the chemo he went into hospital originally with hypercalcaemia and was very poorly. Actually we went into hospital for a bone marrow test as I insisted that the doctor in the Haemotology dept take note that last time he was diagnosed with Lymphoma nothing showed in the blood for ages and only after the bone marrow test which showed extensive tumors did they bring him in for chemo by which time he probably had weeks to live. However he has been in remission for 2 1/2 years before all this started up only six weeks ago. Happens very quickly!!!!

Best Wishes