Rare Extranodal Lymphoma Malt / T cell / cns ? Please help- desperate

Hi Charmay and welcome to this corner of the community but sorry to hear about the challenges you are having.

Rare types of NHL can bring challenges of finding a clear way forward and a consultant team able to deal with this. 

So are you under a Heamatology Team at the moment? Have they referred your case out to other Cancer Centres of Excellence?

I have a different type of rare skin NHL and over the years (22 years) my great Heamatology Team in Inverness have talked and referred my case to other centres of excellence including The Beatson in Glasgow, Guy’s and St Thomas’ London.The Freeman Hospital in Newcastle and The Christie in Manchester.

The combined efforts of these centres has directed the treatment I have had over the years.

There have been a few folks in the group with this type of NHL so let’s see if they are still looking in.

You can also search the old post using the search tool  near the top of the page and as always you can hit reply and post questions in the older posts.

We do have Cancer Nurse Team in our Ask an Expert section where you may want post your question as they may have access to information that may help you move this forward but do allow two working days for replies from our expert team.

Always around to listen and help as best as I can.

 Hi Mike, thankyou so much for your reply, im so grateful. 

I was referred to Mike Leach at the beatson in glasgow but it was not accepted because they said the government wont fund it because I live in southend on sea, Essex. 

St guys and st thomas were awful I saw a dr called dr kazmi who said he would do tests then changed his mind saying “their rare” and im “young” and unlikely to have them” .

I tried the Christie but they said they only treat - not diagnose.

I have not tried the freeman hospital in newcastle but im guessing they may say the same as the beatson - that im too far and government wont fund it.

Tried getting referred to a lady called Kate cwynarski at uclh hospital but was rejected and called a liar in the process as my own doctor lied and told them I have been tested for lymphoma- i have not I have been tested for leukaemia and had a a scan to see how big my lymph nodes were- no biopsies to test for rare lymphomas.

Im so ill and in so much pain I cant bare another day of this it keeps getting worse everyday.

Ive been laughed at and mocked and treated terrible by doctors another thing is i keep getting severe infections but my bloods don't raise up or im neutropenic (fluctuates) and just sent home. 

I am being discriminated and neglected and left to die by england NHS

A kind lady called Hayley from Macmillan is trying to help me and I am begging my mp to help.

I don't know what to do I'm refused help and have to beg doctors who laugh and dismiss me even try and say im “crazy or lying” and my lymph nodes are not enlarged and bloods are usually “normal”

The nodules on my ears excruciating and the burning and itching and swollen hot bones and I feel drowsy and weak and shivery with severe night sweats and delirium , I can barely move my neck and head and my throat cartilage is swollen bad hoarse and hurts to talk, my soles of my feet are red thick and hardened and severely painful, have to keep bathing and moisturising which I don't have the strength to do im swollen all over and my stomach is like a hot water balloon, bleeding and bruised,  i cant go to the toilet or barely eat and really short of breath.

I think im going to be left to die of this 

Ive tried everything,  I feel hopeless alone and scared

Thank you again for your reply and help, its greatly appreciated.

Charlotte 

Hi Charlotte (the name of our oldest granddaughter) sorry for taking so long to get back to you but we have been out getting stuff ready for us to leave at silly o’clock tomorrow to drive south for 10hrs to see our granddaughters

Your story sounds rather stressful, complicated and so frustrating….. based on having volunteered on this community for a few years now….. your story is actually not that unusual to hear.

Charmay said:

I am being discriminated and neglected and left to die by england NHS

Charmay said:

I think im going to be left to die of this 

I don’t believe this for one moment….. it is often all down to getting the right people and the right place together to look at your case.

When we are ill we look for quick answers and solutions….. but from my long medical journey this often does not happen…. my diagnosis with my rare type of NHL from first seeing my GP to getting my diagnosis was about 20 months.

I will however say at this point that if you feel that you have a grievance in any way with medical professionals in a hospital you can always contact PALS (Patient Advice and Liaison Service) for any further help.

Charmay said:

I have been tested for leukaemia and had a a scan to see how big my lymph nodes were- no biopsies to test for rare lymphomas.

The fact that you have had a scan and no biopsy was recommended says a lot…. I am not saying that you should not have had a biopsy but a Consultant Radiologist will have done a report on your scan and sent it to the medical professional who set up the scan request.

What type of scan was it?

There are over 60 types and subtypes of Lymphoma so I am rather sure (correct me if I am wrong) that you have spent a lot of time searching Google for answers, although Google is great, when it comes to blood cancers you will get a 1000 answers and sometimes none are correct.

There are few main components in the diagnosis of Lymphomas….. a scan - CT or PET, the biopsy of a growth area and sometimes Bonemarrow Biopsy…. Interestingly in all my 22 years and like many others, blood tests showed nothing to indicate the presence of Lymphoma.

You need to take a step back and look at all the routes you have tried, where did you feel that you received a listening ear, the fact that a medical professional sent you for a scan says that someone was listening.

With the symptoms you have especially… 

Charmay said:

my stomach is like a hot water balloon, bleeding and bruised,  i cant go to the toilet or barely eat and really short of breath.

…. you need to seek out medical attention be it at your GP or if you feel so unwell you go to A&E.

As for moving forward you said….

Charmay said:

A kind lady called Hayley from Macmillan is trying to help me and I am begging my mp to help.

Could I suggest that you get in contact with Hayley at Macmillan again and talk about the best way to move this forward.

Akways around to chat and help as best as I can ((hugs))