Mum newly diagnosed either t cell or NK

Hi Sunshine1907 and welcome to our corner of the Community although sorry to hear about your mum's journey, this is such a challenging time for the family. I am Mike and I help out around our Lymphoma Groups.

My first very important piece of advice is you do need to be very very careful in what you read on Google as it is often well out of date and does not tend to keep up with ongoing research and treatment developments.

I was diagnosed way back in 1999 with one of the number of different types of T-Cell Non Hodgkin's Lymphoma. My skin T- Cell is rather rare, hard to treat and incurable, although I have had many years of treatment and I am still here and living as good a life as any 66 year old can.

NK Lymphoma is actually one of the types of T-Cell Lymphoma. You may want to look through our dedicated T-cell lymphomas group as well as there have been a few folks with NK T-Cell pass through the group over the years.

As for a good information source I would strongly recommend you stick to the Lymphoma Action website.

Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information and online resources.

They also run regular very supportive Regional Lymphoma Online Support Groups for both patients and carers and a great Lymphoma Buddy Service where your mum could be linked up with someone who has walked the same treatment journey.

This is the Lymphoma Action link to all things T-Cell and the following link may help you get your head round what you need to look to get out of your mum's appointments Questions to ask your medical team about Lymphoma

Always around to answer questions and give support.

Although Lymphoma is the 5th common type of cancer in the UK and treatments available are plentiful and effective...... take a few breaths ((hugs))

Thanks so much for your reply .

She has an appointment  next thrusday  to confirm type and staging and will be given her treatment  plan.

Mentally she's  not coping very well atm. And I live in spain and won't be over until the 7th with my son . But I plan to spend most of her treatment  in the UK.

We're worried about possibly having to travel down to London quite frequently  . I've seen NK has quite and intensive chemo regime .

I think we're  all in shock atm. As she doesn't very overly unwell and because no treatment has started yet ,we're all kind of in denial.

Hi again, a cancer diagnosis can be a shock to the system and it takes time for the brain (everyone’s brains) to sort through all the noise but once she has a clear diagnosis and treatment plan the system just gets moving and she will be into a routine and the noise between the ears starts to turn down.

Most chemo regimes used for lymphomas are intense but there are a few different types so once you have that information do get back with it and we can see if we can help further.

Staging in Lymphoma is nothing like the meaning of staging in most other cancers like Breast, Lung, Kidney….. the list goes on.

A high stage number in other cancers mostly points to a very poor prognosis but in Lymphoma it’s not…….. staging is used to identify where her Lymphoma is presenting, what type of treatment would be best and for how long……. point in case. Back in 2013 I was stage 4a and in the long run it made no real difference to my treatment outcomes just took longer to treat.

As for her appointment on Thursday is anyone going with her who will the ‘calm mind’ that will ensure that all her questions are answered?

This is very important as she needs to get all the important information like type of NHL, name of treatment, clinic contact names and numbers…… you could link in with a conference call on a mobile so you can listen in and be that person in the room and be able to ask questions.

Take a few more breaths……. ((hugs))

Hello Sunshine 1907. Your mother will be entitled to certain types of help, some financial, and may well be eligible for travel grants.

Two organisations that can help with all of this are: Maggie's, Macmillan.

I have had excellent help from Maggie's, they even filled out the forms for me and uploaded documents, and suggested things I was unaware of being eligible for.

There is a Maggie's in Barcelona, but you can also contact them by phone or email.

When in London, there is an excellent Maggie's centre in Barts hospital https://www.maggies.org/our-centres/maggies-barts/  and I would very much recommend coming in there, they are great at offering all kinds of support, including emotional, you can just walk in, and someone will be there saying Hello, showing you the coffee/tea making corner, offering conversation if you want it, and so on. You can get from UCL to Barts easily via the underground or by taxi.

I can't help with the particular type of lymphoma but I am seen at UCH too and can reassure you that they are very good and so kind. I always see the same consultant and he takes time with me and answers all my questions. Your mother will be allocated a specialist nurse who will be her contact for any worries. My nurse phoned me several times in the beginning just to see how I was doing. By coincidence I have an appointment next Thursday too.

Oh by the way, there's also assistance from Macmillans there too so no need to go to Barts.

I think although  she most probably  has a very aggressive and rare lymphoma  I'm somewhat  relieved she is being see in London . I feel she will be in very good hands . Just worried about getting her down for treatment if she isn't feeling too good as we will have to go by train and its around 45 mins 

Ive heard maggies is very good . Would my mum have to go there prescianlly to use there services as I think this may be all too much for her . But I've seem they do online classes like yoga and mindfulness.  I think this would be very helpful for her .

There is hospital transport although I don't know what area it covers. 

It's one of her questions  she has written down. As I've been reading  up on treatment  if it is NK. And one part of the cycle is being injected with a drug every other day for 2 weeks ... I don't know if we will struggle getting her there if she's not well. But she will ask next week 

They do all this stuff at UCH too, no need to trek to Barts. I used to go to a group meeting in the evenings. During covid its changed to zoom and now the wrong evening for me so I don't go now. They also have all sorts of other things like relaxation and massage. I see a foot massage person coming round when I do chemo. I haven't acceped their offer because I'm not into foot touching but it's there. Your mother will be told what's there so don't worry.