NLPHL newly diagnosed

Hi just wondered if anyone has been diagnosed with this nodular predominant type of lymphoma? I have recently been diagnosed and my head is spinning. I’m new on here so don’t know if this is in right place

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Hello @Mojo1

Welcome to the Forum. I’m glad you’ve found us and posted.
Sorry to read about your new diagnosis, you are in good company on the Forum, with many people feeling the same as you around a new Lymphoma (or any blood cancer) diagnosis.
It is completely understandable that your head is spinning, there is a lot to process.
I quickly put in NLPHL in the search bar, as I remembered seeing this recently, it did come up with a thread that @Riddler63 was also in. Hopefully they can help if you have any specific questions.
If you do want support please know you can call our support line: 0800 2080 888 we’d be happy to help you navigate your new diagnosis. You may also want to sign up to our Newly Diagnosed Emails - they are 7 short, weekly emails with some very useful information (you can unsubscribe at anytime if you wish) - this is the link: support-by-email
Keep in touch. Best wishes, Heidi.

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Hello mojo

My name is Nick im 60 years old and i have NLPHL.
They are enlarged in my neck and under my arms.
I am on watch and wait.
The hospital in Nottingham have been amazing i have had all the tests and now i just go to hospital every three months.

I was initaly diagnosed with a poor imune system.

Please dont hesitate if you have any questions
Kindest regards
Nick

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Hi @Mojo1 a great big welcome to our forum.
I read your post and it brought up all the feelings I had when I was diagnosed with a blood cancer with a long peculiar name.
Personally I think that that your feelings are completely natural, you have had a shock and your world turned upside down.
You describe it so well as your head is spinning.
I felt as if I was in a bubble with the world going on around me as usual.
You have posted in completely the right place.
@Heidi_BloodCancerUK has given you a brilliant response.
I hope someone will be able to share their experiences with you.
Please do keep posting as I look forward to hearing more about you and how you are doing.
Really do look after yourself, your head might feel that it is spinning for a while

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Hello

I was diagnosed with hodgkin lymphoma NLPHL IN january i remember that day but all i heard was cancer.

I had my initial biopsy under my arm which detected the cancer i was then booked for a pet scan and a bone marrow biopsy.

My bone marrow was clear but from the pet scan found enlarged lympnodes in my neck and under my arms.
I was then put on watch and wait as i had no symptoms.apart from feeling tired at times.

I was then refered to immunology as i have a poor immune system which previously to the cancer is why they discovered my condition.
In november i had the flu for about 8 weeks which i couldn’t shake and in the end it took three weeks of antibiotics.
I had a pneumonia vacine and blood tests four weeks later my body didnt act like it should of so from now on my gp knows to make sure i get a strong antibiotic and for twice as long.
I may need more help in the future but for now im ok
The hardest part is coming to terms with watch and wait because my thoughts were why dont i get treatment now but that would kill my immune system
and as ive said a few mild symptoms tiredness and night sweats.
I have had some counselling which has helped as my counsellor husband had the aggressive strain had the treatment 10 years ago came through the other end still on watch and wait but is clear.

Nick

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Hi Riddler63 , I have NLPHL too and am awaiting my pet scan which I’m catastrophizing about , thinking they will discover a different kind of cancer during the scan , I know it’s very unlikely but I can’t switch off , how are your symptoms as I don’t have any except for feeling a bit warm when I wake up and that’s because it’s the first thing that enters my mind and it stresses me out , I find getting through the days hard at the moment

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Hello yolanda65
I was diagnosed a year ago my lympnodes are realy small im 2a
I have had night sweats a few times.
I was also diagnosed with hypogammaglobulinemia so had a few infections but am now on antibiotics which realy is helping.
You don’t ever forget but in time you get use to it but make sure you ask for help the NHS are amazing loads of support and my doctor was great.
I am at the stage where I go to consultant every four months for tests but you have nurses you can ring inbetween if you are worried they are great.
Don’t hesitate to contact me if you want to know anything
All my love nick

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Hi Nick , thank you for your reply , so you haven’t had no treatment yet , my consultant said she wants to treat me but I have to wait until my pet scan comes through, I would prefer to wait and hold off treatment for a while , my son gets married in May and if I can delay treatment if it’s early stage then that’s better for me
Love Yolanda

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Good morning

No not for the cancer could be two years could be ten they don’t know hope everything goes well.
Love
Nick

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My husband diagnosed to day with low grade non Hodgkin lymphoma , I thought it was Chronic lymphocytic leukaemia (CLL) which GP led us to believe , so now I’m trying to get my head round this , no symptons at present and wcc and lymphocytes only slightly raised , still I’m overthinking etc , he’s to have ct scan next .

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