Hi all, my mom was diagnosed with AITL in 2019. She had CHOP and went into remission. In early 2021 she suffered a relapse and then went in to have PEP-C treatment which then put her back into remission. Earlier this year, she started having the symptoms again and eventually another BMA was performed. Sadly the area got infected and she ended up in hospital on drips, antibiotics etc. We got the results back and the flaming thing has resurfaced, she has had a couple of falls recently, her legs and lower body have filled with so much fluid to the point that it was literally seeping through her skin. She has just come back out of hospital. When she went in she was struggling, but able to walk about and care for herself. Since she went in she has become double incontinent and not even able to stand anymore and is totally bedridden and dependant on others for her personal care/meals etc. Her harmatologist has said that she is not well/strong enough to cope with another round if chemo and she and us have had to accept his decision. We, my sisters and I, are doing everything we can to, as they say, ‘keep her comfortable’. But i really need to ask, if anyone can possibly answer, does anyone know what we may be about to experience as she nears her ‘end of life’ ? So that we can mentally prepare ourselves for the sadly unwelcome but inevitable event that is going to happen at some point in the future. She is currently in no pain, so is on no pain relief whatsoever. Will she go peacefully and painlessly, or will it get worse and may she suffer?
Hi and welcome to the Online Community although I am sorry to hear about your mum’s diagnosis and prognosis. A cancer diagnosis like this in the family can be such a stressful and challenging time but I do hope you will find the community a safe place to get support and ask your questions.
I was diagnosed way back in 1999 with another rare type of T-Cell Lymphoma (CTCL) and fortunately after 17 years of treatments I am now in my 6th year in remission, the longest remission I have had as until Sep 2016 my remission only ever lasted 9 months.
I am very sorry to hear that your mum’s condition has progressed to the point that she is unable to have more treatment…… T-Cell Lymphomas are had to treat and often require some very demanding treatments…… my last role of the treatment dice was to have 2 Allo (donor) Stem Cell Transplants….. it was all very hard work and although successful I am now left with post treatment left over medical issues.
At the moment there are no family or carers posting in our T-cell lymphomas group but when it comes to the practical and emotional challenges of supporting family during these very difficult times you may benefit from joining and posting in our general Carers only and Supporting someone with incurable cancer groups as these are safe places to talk to others who are navigating the same support journey, to ask questions and get support.
If you'd like to connect in with a group click on the Green (Bold) link(s) I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.
Please do get back to me if you need further help.
((hugs))
MoomaT....... I am truly sorry that your mum's condition had developed the way it has....... at time this is Lymphoma 
Yes it has been a hard fight so as a family we appreciate every moment of every day....... you need to appreciate every moment you have with your mum.... make memories, look at old photos..... have a laugh and and cry.
Do connect in with the groups I have highlighted as you will connect with others who know 'exactly' what you are going through and will be able to share experiences as to what to expect as time goes on. Our local Maggie's Centre was a God send for both my wife and I...... do check this out.
I wish your mum, you and all you family all the strength in the world..... you will always find me on the community if you just want to chat...... but I do know this journey well as I lost my 92 year old mum (not to cancer) 22 months back during the various lockdowns.
((hugs))
