Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

My Non Hodgkin lymphoma

Katy Lou
Posted by

Hi everyone. I posted on here few months ago. Been on somewhat of a journey since. It all began with a tiny spot on my stomach which went inflamed and had to have day surgery to    remove it. It was thought to be an abcess but no it was a cancer. High grade non Hodgkin        Lymphoma T cell. stage 1. That was 13 th November 2017. Had Pet scan at Stoke November. 20th . Given wonderful news Nov 28 th Pet scan was clear. No cancer. As you can imagine me and my lovely family were over the moon. Had a nice Christmas. My haematology Dr wanted me to have radiotherapy to make sure he said. Three days ago I saw to my horror a little spot on my stomach about two three inches from the other one I had had removed. Saw oncology Dr. Yesterday and they are puzzled but I had the spot removed there and then with day surgery . Waiting for result. Was so positive now so frightened and worried. Scared about            Chemo if needed now. Think it's although I am in good health otherwise I am 79 . Don't feel it or look it people say. Hoping I can stay strong.  Katylou xxx

johnr
Posted by

Hi, sorry to read it may have returned quickly, Mike is much more experienced in so much he may have the same type of T cell so will let him respond, but it is treatable and I have known older people go through treatment and enjoy remission.

so a healthy young 79 year old will be fine

John 

Katy Lou
Posted by

Thank you for your kind words John. Got to stay positive I know xxx

Thehighlander
Posted by

Hi Katy Lou, just in the door so sorry for not getting back to you. I had/have Continuous T Cell Lymphoma (CTCL) (Mycosis Fungodes)

CTCL is mainly a skin cancer and can be very fast growing. Most of my treatment during the first 14 of my 18 years and was supervised by a very experienced Dermatologists. Then I moved on to Oncology then finally Heamatology as the condition developed. T cell is rare and there are a few types so you need to get an exact diagnosis based on biopsy.

I don't know if you have had a look at my profile info  as this would give you an idea of what I went through and what my T cell was like. Have a look and get back to me with your questions.

Katy Lou
Posted by

Hi Mike. Thank you so much for getting back to me. My goodness you have been on such a long journey. I admire you for being so brave and strong.  So glad you are well now. Only know mine is high grade non Hodgkin Lymphoma T cell stage 1. So afraid xx

Thehighlander
Posted by

Hi Katy Lou, you will get lots of 'you are looking great, you will be fine' when inside you are a whirlwind of emotions. Even although they have said you are Stage 1 it only gives your team info as to what type of treatments they may have to use. It also suggests that you have no activity in your Lymphnodes and this would be very good news.

Sorry but a few questions:

Was your first skin area removal sent to a pathologist for testing? If it has your team will most likely have an exact typing for your T cell. This is very important to know this information as with this we may be able to help you more.

Have your team given you an exact treatment plan, again this would be good to know this info.

Have you ever been seen by a Dermatologist?

Should and I say should you have to have Radiotherapy and/or Chemo it's all very do-able and at this stage would most likely not be strong.

Please remember that we are not medically trained bit what we do have is our own concer stories.

Get back to me soon.

Katy Lou
Posted by

Hi Mike. I do appreciate you getting back to me. Very grateful for your time and advice. I only know it was removed by general anaesthetic and the Dr had a shock finding the cancer as it was thought to be an abcess. It was sent to be checked . My oncologist examined me yesterday and said no lumps in groin under arm and neck thank goodness. The minor op they did yesterday on the second spot was not at all deep . I don't know what all this means quite. The first spot by the way was really deep. No not been seen by dermatologist. I was about to begin radiotherapy but this new spot has changed things until results come through. My oncologist was very puzzled by the second spot appearing so soon after getting Pet scan clear in Nov. I've not felt ill and not had weight loss or night sweats or fever that I've read about. Finding it hard to believe it all and really scared. Wish my lovely husband was still here. Lost him 11 years ago but I'm lucky as I have a wonderful caring family. It really helps to talk on here though. Thank you again xx

johnr
Posted by

Hi again, not everyone experiences night sweats, weight lose or fatigue, these are called B symptoms, we can help you with the questions to ask so you better understand and Mike has done that already, but if the is anything else just ask and start a list so you get to ask everything you need to. 

regards

John 

Thehighlander
Posted by

Hi Kate Lou and good morning on a beautiful but crisp frosty morning up in the Highlands.

I am so sorry that you are facing this without your lovely husband, do you have other family members or good friends arround you to help you out and basiclly to talk to? It would also be good for someone else to go along with you to appointments just to make sure all the information is being understood.

T cell Lymphoma is rather rare and some medical experts/consultants do find it hard to understand, miss-diagnose and get the exact type of T cell identified. This can take time and in my case well over a year. John is correct in that you need to keep pushing your team to get a correct diagnosis as the term T cell has lots of types and each one will get its own treatment plan.

Yes, skin Lymphoma can be fast growing but your team should be consulting with national and international experts to ensure the best possible treatment us made available for you.  

This is a good link to Lymphoma UK and gives you some good info about the types of T Cell Lymphoma.

The type of T cell (CTCL) I lived with for years was in the various layers of my skin. If you have looked at my profile info you will see the various treatments I had over the first 14 years. I was under one of Scotland's top Detmatologists and he did get the condition under control and a maintenance treatment plan that worked. I had a 70% skin coverage with various types of skin infections. raised skin including tumours. To be honest if they had cut out every tumour I had I would have not have had any skin left!! It did take over 14 years for the condition to progress to a position to need Radiotherapy, Chemo and finally Stem Cell Transplants.

As John says get some prep done, you need to get answers and a clear plan to go foward with life..... so get a note book and start putting down questions like:

I now know that there are a number of different types of T cell Lymphoma - so what one do I actually have?

What does the pathology say about the skin that has been removed on the past two occasions?

I have been told by a few folks who have lived with T cell Lymphoma for years and that their treatment has been supervised by a Dermatologist - would it be beneficial to consult with a Dermatologist?

Have you consulted with other experts nationally and international to ensure the best possible treatment is being looked at? 

What treatment plan have you got for me at this point in time as you can't just keep cutting lumps out of my body?

Will I need chemo?

Why do I need chemo?

What the name of the chemo?

How long will this go on for and hw long is each cycle/treatment?

Will I need Radiotherapy?

Why do I need Radiotherapy?

How long will this go on for?

You will also think of questions yourself, put them in your note book and get an appointment with your team and ask the questions and don't move until you get answers that you and your other pair of ears understand, take time to put the answers in your note book, its so important you get a full understanding what you are looking at in the future.

Its time to get pointy elbows and get your foot stuck in the consultants doors. You need to get some control of the situation so you can get on with this living this life thing.

Always arround to answer questions, don't walks this by yourself let us help you.

Big Highlander ((hugs)) 

Katy Lou
Posted by

Hi Mike. Thank you so much for your long reply. What a lot of questions to ask but I am taking your advice and have a notebook and going to start. Yes I have three lovely caring daughters , six wonderful grandchildren in touch daily and my sister and of course some wonderful friends. I am very lucky I know. My daughters are alongside me with every appointment. Trust me to get a rare one. Got to have stitches out at GP on the 22 Jan and awaiting result of last spot being removed. Got an appointment with my Dr at haematology on the 30 Jan. Trying not to be silly and stay positive. Just talking and reading on this site really helps. Lovely folks going through this thing together. Makes you realise you are not on your own. Hope you are feeling ok today. You are one brave chap I feel. An inspiration to us all. xxx