NK T Cell Lymphoma

Hi   and a warm welcome to the Macmillan Community but I sorry to see the reason you have had to find us. I am also sorry for not getting back to you earlier but have been doing a job for my daughter.

T cell Lymphomas are rather rare and when they come along we find out how rare they are. You will have noticed that we had another rare type come and join us this morning :(

I am not medically trained but have been on my 18 year journey with a rare Primary Cutaneous T Cell Lymphoma. I have had a search through the Macmillan Site and I did not get one hit in any of the forums for NK T cell :(

I had to have a look in the Lymphoma UK site and found some helpful information (link). We also have some T cell info in the Macmillan site (link)

On the surface of the information it looks treatable. I say this as when I was first diagnosed by my Dermatologist he said that there was no cure and one day in the future the condition would become life threatening. Well he was right with regards to the condition going bad but wrong in his warning given over 18 years ago as I have no trace of the condition in my body at this time, so some positive vibes coming your way - treatments move on and remarkable things are being archived.

My condition was a skin condition and like your mums did not come up initially in the Lympnodes or as a tumour but looked like very bad Psoriasis and I had a lot of treatment to keep it under control but 4 years ago it just went out of control and a tennis ball sized tumour grew above my right eye.

A long story short (you can hit my forum name and see the full story) I had Radiotherapy, 6 cycles of chemo R-EPOCH (750hrs) Total Body Irradiation, more Chemo and my first Stem Cell Transplant (SCT). This did not work so had more Radiotherapy, Chemo and a second SCT and as of a year ago I am Lymphoma free :)

Lymphoma is so hard to diagnose, then to find one of the 80+types. It took lots of CT scans, bloods and 7 biopsies to eventually hit the target and this took a year!

On the whole Lymphoma is treatable and your Heam team will use the best tools available to hit it hard. As this is a blood cancer when the chemo goes in it follows the blood directly to the areas that need to be treated.

Could I ask if you know what type of chemo your mums is having, how many cycles and how many sessions of Radiotherapy are they looking at and what areas is the Radiotherapy to directed.

I can give a lot more information but I will stop at this point, get back with the answers to my questions and please get back to me when you can.

Hi Samantha  I just had some time to give you some more information as we have our 4 granddaughters coming for the weekend so I may not be able to get on the forum much, mind you I may have to find a dark room now and then ;)

I volunteer for Macmillan to keep a few forums running and try and use my journey to help support others going through the rollercoaster of Cancer diagnosis, treatment and support. I understand what your mum is going through so you can ask me direct questions and I will give you direct answers.

Your mum is rare, well every mum is special :) I am also rare as highlanders go :) but a few years back my Dermatologist asked me to go with him to the Scottish Dermatology annual general get together. Out of 60+ Dermatologists only 2 or 3 had every seen my condition.

Can I take some of the concerns out of Chemotherapy.

You will hear and read lots of stories (don't consult Dr Google as its the worst place to go) about the negative side of Chemo but the fact is Chemo is very do-able. Yes, some treatments may effect your mums hair but not all. I can give you more help once you answer the questions in my first post. Some folks have issues with sickness, in reality sickness meds have come a long way and on the whole this can be controlled - but always tell your mums team about everything, regardless how small.

Some folks will go off eating but it is very important to persevere as she will start to drop weight. Little and often with home made soups and food that can be easily digested is the way to go.

One of the more common issues is fatigue. This will get worse as time goes on so you may find she will sleep lots - this is ok as her body will take a beating and it needs to recover but it is also important that she stays active. Small and regular exercise will actually help with the fatigue, sounds counter intuitive, but it's true.  

It's also very important that she needs to drink lots....... 3 Lts a day, now I did find this hard work but it's very important to help flush out the toxins that will get into her system and keep the main organs clear of toxin build up.

Some will have what we call chemo brain, but this normally short lived........ I did sort of miss being able to use this as a good excuse for forgetting things ;) Chemo finger and feet (peripheral neuropathy) gradually gets better when chemotherapy is over but sometimes it’s permanent. I still have peripheral neuropathy in my hands 3 years post treatments. These are a couple of links relating to Chemo and Fatigue.

Your mums immune system will be compromised due to the chemo so care will need to be taken with regards to people visiting who have colds and other infectious conditions. Food needs to be correctly cooked and its important to know how food is cooked as bacteria can be a big problem. Also be very careful with regards to carry out food and also salads.

Radiotherapy can be hard work but once you tell me some information I will try and help out.

One final thing for now is the note book!!!! You need to get a note book that is the central place where everything your mums medical team tells her and the family. Everything needs to be recorded: diagnosis, exact types of treatments, proposed lengths of treatments, names of drugs, side effects to look out for etc, etc.

The family need to get organised and empowered. Don't stress the stuff that you can't control but do your best in the areas where you can control. The note book is where you put down EVERY question that comes to mind, these often happen at silly times during the night, put them all in the book and park them until the next appointment or hospital visit. The book goes everywhere and when a consultant asks the question 'have you any questions?' you can say 'well, yes I have'. 

Its important that your mum has someone with her at all appointments as the extra ears is sooooo important. Don't move until you get answers that you understand, take time to put it all in the book and keep asking 'what is next?' You will find if you don't control the information the Medical Team will move on to the next important thing before you understand the last thing you were told.

With clear information you all can understand what your mums journey will look like and together make a plan to fight the battle.

Ok, so I am going to stop this time, please get back to me at any time.

Thank you so much for your messages Mike!  And for sharing!

I'm unsure of the name of the chemo (I'll find out on Tuesday)  - I believe they want to do 3 cycles and assess progress and then onto Radiation.  We meet with the oncologist 9 November so she will be the one to tell us the amount radiation needed.

Radiology will need to make Mum a mesh mask as it will be directed to her sinuses and glands.

Thanks,

Sami

Hi chemo could be SMILE or something like CHOP

John 

Hi Sami, I have had two full face masks. Being totally honest it's best she does no research on it as she will get negative stories - On this occasion ignorance is bliss. It all went over my head the first time round but I was on edge the second time as I knew what was going to happen.

The fitting will be over and done with in a few minutes, it's amazing how they do it. She will have to lie flat on her back with her head on a head rest that will get her head in the correct position. Then the Radiotherapy Technicians will put a big sheet of plastic mesh into a water bath. Once it's ready they will mould it over her face securing it to the top surface of the set up table with 6 thumb screws. It is a touch claustrophobic but it is very do-able.

She will then be taken to the CT simulator where the Consultant Radiologists and Radiotherapy Team will set up all the machine coordinates used in setting up the Radiotherapy Treatment Machine (linear accelerator). This process I found to be hard work as you have to be on your back on the CT simulator to get all the settings done for a long time without moving and the mask will be on for a good portion of this time. I have Thoracic & Lumber Spondylosis - Spinal Osteoarthritis so this was very hard work but I took some painkillers before each session and this did help but I was left with a lot of neck and back pain for a week or so after the Radiotherapy.

My face looked like a little child had been let loose with a pen on my face ;) They will stick 5mm lead sections onto the mask to protect areas around the treatment area from getting residual radiation. They will also have the eyes protected with 5mm lead patches. The initial first Radiotherapy session will be the longest then all other sessions will be much quicker.

I have the 2 masks in my garage and I clean my paint brushes on them - I could have a work of art out there ;) In the end I didn't find the Radiotherapy its self to be a problem but make sure she gets some cream like Diprobase to keep the treatment areas moisturised.

Hi Sami

I've not been active for a long while, my husband had NK T Cell Lymphoma, he too presented in his nose but he did finally get a tumour there, he thought it was just blocked, had various treatments then a referal to a specialist and then the ball began to roll!! 

He had SMILE chemotherapy and as The Highlander said it is doable and the fatigue does build up over time.  He was in hospital for a week at a time and on a drip with constant fluid intake - always had a bed by the loo :)  When he came home he did odd jobs and a little excersise, which did help but lots of little rests were required, especially as the treatment progressed.  Food was difficukt as he lost taste a little for a period of time, especdially during treatment, strong flaours were preferred or he would fancy something, which I would try and get, then he would be disppointed that they did not taste as expected. Chocolate ginger biscuits were a big hit as was the odd curry!

He found a good, practical and informative You Tube video on the radiotherapy mask fitting which really did help him prepare for the fitting which was good as although it was explained to him by the staff, seeing it happen was better, this meant he was well prepared and it was not too bad an experiance - knowing what is to come helps - the radiotherapy was not too bad, the comardarie of the other patients was a help as were the lovely hospital staff - always friendly and willing to answer any questions. He was treated at the Royal Hallamshire at Sheffield.  The Radiotherapy dept had open days / nights for you and your family to attend, because of timing we didnot go but after treatment started the kids (in their 30's) went and found it helpfull and positive.

He too kept his mask and it has moved with us but we have yet to find such an interesting use for it as The Highlander has :)  I thought it might be good for my crochet threads but they snarl in the holes LOL. 

I wish your Mum and your family all the best xx

Great reply Rovann :)

Hi Sami I found Rovanns thread from a few years back (link) 

Thanks so much for this Highlander!  Great to have this knowledge before going into this...

Mum has a bad back anyway so I'll make sure she has some painkillers in here before then!

Thanks again,

Sami 

Hi Rovann,

Thanks for you message - glad to see that this has happened to someone else - the beginning stages I mean.

I'll have a look for the video as I think this would be good, so we know what to expect.

Again thanks for sharing.  Mum starts her first chemo treatment tomorrow so hoping all goes okay.

Speak soon xx