Nodular lymphocyte predominant Hodgkin lymphoma

Hello and welcome,

though sad you’ve needed to find the group! I’ve been looking in for some years now and think I’ve only met one other person with your type of lymphoma, so I somehow doubt you’ll get a response. Have you tried the Lymphoma Action site too? As they are a smaller but much more specific charity. 

About your back pain, is your consultant sure if that’s connected or not? It might be a question to ask....

keep posting! And if you haven’t, please do fill in a bit of basic info on your profile, just click on your user name and go to ‘edit my profile’ as it does help those of us overseeing the groups. Mine is long as daughter had a refractory HL and then I got cancer myself. 

Hugs xxx

Hi  and welcome to this corner of the Online Community, although I am sorry to see you finding us.

I am Mike Thehighlander and I am dropping in past from our Non Hodgkin's Lymphoma Forum just to say Hi and help out as best as I can.

I have had a look through the site and there have been a few folks over the past year or so come in past who also have Nodular lymphocyte predominant Hodgkin lymphoma so lets look for them to pick up on your post.

You can have a look at their posts by putting Nodular lymphocyte predominant Hodgkin lymphoma into the search tool near the top.

My type of Skin Lymphoma was rather different even although i had a mass on the left of my neck so can understand you journey in part. As for aches and pains in other places - its a yes from me..... no real answers from my team on this apart from "..... your body is just fighting in lots of areas so what you would have not have noticed before is just get magnified" also "Your Lymphatic system is working overtime so you will get pains in other areas"

In the man time hear is some information that may be useful for you.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Our Online Information and Support Section  is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

Always around to help out as best as I can.

Hi Buzzybee

I had NLPHL stage 3 diagnosed June 2017 and got to remission in September 2017, finishing treatment in November 2017. I  was treated with ABVD plus rituximab which is the standard for that stage. I didn't have any symptoms and I found out from having a lump in groin biopsied. 

Your PET scan will allow it to be staged to determine course of treatment

It is rare -I think 5% of all HL. My father also had it a number of years ago and although doctors tell me it is not genetic it is a bit of a coincidence. I think I read about every article out there at the time on the subject. There are a few out there and a bit of the American Cancer Survivor network.

I don't recall ever having the pain you refer. 

Happy to share any further details of my experience with you

Cam

Hello I have been diagnosed with nodular lymphocyte predominant Hodgkin’s lymphoma and I do have the pains you describe I’ve been having them since October 2018 with weight loss and night sweats I haven’t start treatment yet radiotherapy first 12 August and been told r chop chemotherapy after anyway be god to talk with someone that can understand what this illness is 

Thank you lots of helpful info !! 

Hi , thanks for replying ! Glad your treatment is all finished how did it go ? Hope you didn’t have to many side affects ! 

they are doing the pet scan after radio therapy so I’m wondering if they have already staged it just by the ct scan . This was over the phone I was told . I’m hoping I get an appointment through the post to actually go in and speak to the specialist . 

Yes I think I have heard it’s common that close family members have a higher chance of having it . 

Hi , thanks for replying !!

• how long ago were you diagnosed ? I finally had the phone call with my biopsy results at the beginning of July . So they are putting you straight into radio therapy like me ? I am shocked they haven’t done a pet scan first with me , they are just going with what the ct scan has come back with . They said they don’t want to do one before and after radio therapy . Have you had a pet scan ? Did your specialist say the pains were linked ? Mine didn’t say anything, just nodded and wrote it all down I’m going to push for at least a possibly from him next time . 
• I’m glad you saw my post I was worried I was going to be the only one on here with it !! 

Hi, I would say you really have to have an appointment with a specialist to run through everything and have the chance to ask all the questions on your mind.

Cam

It's great that all you folks have connected.

, as has been said, you need to get together with your Consultant or Specialist Nurse and ask all your questions.

I always recommend you get a note book. The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant or SN says ‘have you any questions?’ the note book comes out.

A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.

Yes thank you . I’m hoping I get an appointment with him before I go for the treatment to discuss more of the findings from the scan . I have a pad that I wrote things down in , but didn’t take it at the first appointment , I suppose in a way I feel that it’s not important enough . And feel silly sitting there writing it down . I was the one in the rooms with my mum being diagnosed with terminal cancer a few months ago . So I need to get that out of my head and jot things down when I’m in there . (I know that all sounds silly when I read it out loud ! )

Thanks for all your advice !!