Angioimmunioblastic T cell lymphoma

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Hi

My mum has been diagnosed with AITL and is 71. She was in perfectly good health till January this year then was diagnosed in March. She has lost so much weight and has been unfortunately suffering from bowel incontinence and diarrhoea. She is being careful about eating the right foods and is taking diarolyte. She started chemo a week ago and is on steroids. 

My concerns are that she’s so thin, only able to eat small amounts of food, has several bouts of diarrhoea daily and is unable to control bowels. Her eyes are a bit cloudy and one eye looks a bit squint too. She doesn’t have any aches or pains and doesn’t feel sick. 

I have advised her to speak to consultant tomorrow as she cannot possibly go on with high levels or diarrhoea. 

Does anyone else have any similar situations to my mum and if so, what can be done about it? She is only on first cycle of chemo...5 to go. 

thanks. X

  • Hi  and welcome to this corner of the Community but sorry to hear about your mum.

    Yes unfortunately regular diarrhoea and lack of bowel control can be normal.

    She must call this into her team first thing tomorrow and ask for some support. It is very important that she keeps drinking to ensure she dies not get dehydrated.

    Eating small amounts can also be normal as long as she is having something, at my worst all I could take was regular small cups of good homemade soups

    What is the name of the treatment she is on?..... some treatments can do peculiar things to the body but again all issues should be reported to her team, if she has been assigned a Specialist Cancer Nurse (SCN) then these are the best people to talk with.

    Do come back and tell us how things are going.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you so much Mike. I do not know the type of chemo she has been put on but will find out. She has been good at taking water and fluids so hopefully that is helping. I’ll try and sit with her tomorrow when she calls and make notes. Really appreciate your words and advice! X

  • So sorry to hear this. I would suppose that it is paramount to both drink considerable amounts of liquid, but also to increase caloric content, so as to allow her body to muster the best fight that it can. My opinion here, but at this point, and for this limited time, I think it best not to be preoccupied with absolutely healthy foods. She needs fluids and protein etc. simply to maintain her bodily strength. In my case, there was no concern over whether or not it was the "best" food to eat or not. I think there is enough chaos in her body right now without effecting some form of diet. I ate whatever seemed palatable and which would not induce nausea. 

    As to her bowels, there are various medications which can help - I would suppose that she is already receiving them. Taking medication is always important, but can be absolutely crucial during cancer treatment. If her appetite diminishes, there are also medications to stimulate it. I received one such medication to start my appetite immediately after transplant. It worked perfectly.  The love and support of her daughter is the best that you can offer, and you might take notice of things that she does not, such as skipping medications or such. She is very blessed to have you.

    ______________________________________________________________________
    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.

  • Thanks for you help. She has been told to take Imodium but it’s had no success in stopping or reducing diarrhoea. We will ask what else can be taken. 
    With diet, she started off eating anything as advised but bad diarrhoea continued. Then switched to foods advised on a lymphoma website thst can ease diarrhoea. Neither seem to have made much difference which was a concern. She’s Also taking complan calorie drinks which she likes. 
    going to call cancer hotline this morning to explain to them how her first week has been and to inform them of the on-Going issues. Thanks again for reaching out x

  • In that case, her chemo dosage might need adjustment. This exactly occurred at the end of my rather intense consolidation therapy. I mean, what's the point if she is becoming sicker or more frail in this attempt to eradicate the cancer? There are indeed times when the patient and doctors are at cross-purposes. You could also ask of a druggist what the tolerable dose of imodium is - oftentimes public doses are quite conservative. Indeed, druggists may have a more functional knowledge of the available anti-diarrhoeal drugs than some physicians. There is a solution to all of this, just persevere and it will be found. Sooner than later we pray!    

    ______________________________________________________________________
    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.