Angioimmunoblastic T cell lymphoma

Hi  and welcome to our little corner of the Community but sorry to hear about your partners diagnosis.

There are a number of folks - both carers and patients with this condition so let’s see if that pick up on your post  

What treatments has he started?

Where is he being treated?

Have any specific questions?

You can use the search tool and put in AITL or Angioimmunoblastic T-cell lymphoma and look through some of the old posts.

We are around to walk this with you ((hugs))

I’ve been up and down most of the night and this morning taking my partners temperature. It fluctuates every time I do it. I take 3 readings in each year sometimes the first reading is high then the other time it’s lower. It’s driving me crazy. I purchased the braunThermoScan hoping it’s more accurate it shows a higher reading than the other 2 I have. 

Hi I also have a BraunTherooScan and find it very accurate...... I actually took it with me to hospital last year when I was in for a week with an infection and it was ±1 degree.

Has he started treatment? During treatment my temperature was all over the place at times and we did not hesitate to call my team - better safe then sorry.........I was given by my SCN about temperature.

A high temperature (over 38°C) or a low temperature (below 35°C) could be a sign of infection which your immune system may be unable to fight.

Any infection must be treated quickly with antibiotics so please be prepared to be admitted to hospital for immediate antibiotic treatment.

Please follow the guidance below, but if in doubt, please contact the hospital:

• If your temperature is 37.5°C, repeat in one hour. If your temperature has increased, whether you feel unwell or not, you must contact the hospital.

• If you have a temperature of 38°C or above, whether you feel unwell or not, you must contact the hospital immediately. Please do not wait any amount of time before you call us.

• If you feel unwell but do not have a temperature, monitor your temperature every one to two hours. If you continue to feel unwell, please contact the hospital.

• If you wake up in the middle of the night with a high temperature, contact the hospital immediately – do not wait until morning.

• If you feel cold and shivery, even if you do not have a high temperature, please contact the hospital.

• If you have more than two episodes of vomiting or diarrhoea, or you are concerned, please contact the hospital, as you may become dehydrated quickly.

• If you start to cough up phlegm, have any shortness of breath or chest pain when breathing in, please contact the hospital.

• Look for signs of bleeding, such as bruising, bleeding gums, nose bleeds, coughing up blood, or passing blood in your urine or stool. This may be due to a low platelet count. Please call the hospital if you notice any of these signs.

• If you develop a rash, headache, stomach pain or any weakness, please call the hospital.

Hi just one question, are drenching sweats fairly standard the day and few days after the chemo treatment day. Temperature is normal 

thanks for your help 

From what I have read on the Community - for some this can be the case...... but remember that chemo does play around with the bodies internal thermostat....... a lot of my treatment was over the winter and I was always very cold so had the heating full up....... my wife was in T shits :) 

I never had any sweats........ until a few years after my treatment was completed - touch of a panic set in - but it turned out I had an infection.

((hugs))

Good day. I may show as firefly6, but that is only a temporary username due to account difficulties. Once it is changed, my username will be po18guy, as it is in other forums.

In any event, I had a type of PTCL-NOS (UnSpecified) that was similar to AITL, yet was not AITL. At diagnosis, I was stage IV with "innumerable" tumors (50+) and bone marrow involvement. It relapsed twice, then a portion of it mutated into AITL; therefore, I had two distinct T-Cell Lymphomas. Stage IV once again, with two dozen tumors (Yank spelling), plus spleen and small intestine involvement. The topper was that from extensive treatment, I also developed 20q deletion Myelodysplastic Syndrome (MDS) at 26% of my marrow.

Thus, I had a rather full plate involving three simultaneous cancers. However, a brilliant research hematologist here stateside came up with an experimental three-drug regimen that miraculously erased all of it in just two infusions. Since that made a total of 15 drugs, there was essentially nothing left to use. A 3rd relapse of the PTCL was almost assured, as was a relapse of the AITL and the MDS. Not wishing the MDS to progress to Acute Myeloid Leukemia, I was therefore hurried into transplant. 4 1/2 years later, I am still treading this earth.

So, let hope not disappoint.

Hi po18guy and a warm welcome to our little corner of the Community.

We do have a good number of folks from across the pond come on to the site so a special welcome from the UK........(Scotland)

You have had a ‘interesting’ journey but good that Stem Cell Transplant has been able to put a stop to any further downward progress and long may it continue,

You will see from my profile (hit my Community name) that it was Stem Cell Transplant that interrupted the free fall of my CTCL........ I am now just over 4 years post my second Allo SCT and doing great.

If you are interested, we also have a dedicated Stem Cell Transplant Group where we journey the Magucal Mystery Tour that is SCT including the post treatment rollercoaster.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

Good to have you around.

Hi, Two weeks ago I married my partner of 30 years. Long may our lives together last.

I am finding myself on a very difficult journey with his diagnosis of AITL. He was told in the beginning that he will likely die from his condition however is undergoing chemo with the aim of remission, however he was told this often fails.  I have been very supportive and have given him hope that his condition is treatable and that the aim is to get him into remission and stay there. I have researched his condition and the possibility of relapse is highly probable and looks like this happens with AITL within a short time . I am faced now with the question of , do I tell him what I have read about the prognosis. I fear that I am giving him false hope and am very frightened of asking his consultant in front of him as she is going to be blunt. She already told him to put his affairs in order which made him extremely anxious. I am making plans and encouraging him to look forward to our future but in my heart I know this more than likely will not be for long. I don’t know what to do . 

Hi again and congratulations to you both.

This is a hard situation and there is no clear answers as everyone deals with this differently.

back in late 2013 we were also told to get everything in place (but we had done that years ago) as there were no guarantees that my proposed treatment plan would work resulting in me having a few years left or putting me into remission which it did....... but we are under no elision that it could came back at some point....... but we don’t let that define us.

We are very open with each other..... being married over 40 years dies that and deal with facts and truth head on.

We did do some initial research but found it all based on such divers (old) evidence and statistics we dismissed it as a way to live life..... as we would be continual looking over our shoulder......... we live in the “to day is a new opportunity to live - we will face tomorrow, tomorrow”

So from our point of view it’s total honesty, but not everyone can deal with this.

We were always together and agreed that we would always ask our team searching questions in the hope of finding clear answers....... but even then consultants can only give ball park information as each patient is different.

We were given the option of taking the chance my plan would work and find some remission (from a condition I was told in 1999 that there was no remission) or do nothing and go down the palliative route........ so we fought for life.

You could arrange to talk with his team on your own...... but do you want them go through each day knowing information that he does not know....... if I was him I would not want that.

Sorry no real answers for you but always around to listen and help as best as I can x