NLPHL

Hi again Wiggins and well done naviagting across to this corner f the community.

As I said in your first post I don't have Nodular Lymphocyte-Predominant Hodgkin Lymphoma but been living with and been treated for a rather rare type of Non Hodgkin's Lymphoma first diagnosed in 1999.

Do tell us what has been happening....

When were you diagnosed?

Are you on any treatment.... if so what s the name of the treatment?

What hospital are you being treated at?

The group is here to help you navigate this journey so do ask your questions and we will try and help you out as best as we can ((hugs))

Back again. Had lump under right armpit. A biopsy was taken but not enough cells taken to make a proper diagnosis. The lump was subsequently removed and set to Birmingham. Waited four weeks, so I was thinking , no news was good news. Turns out it was NLPHL Had PET scan . All was not removed leaving two bits under my arm some under my collar bone , some in my neck and something in my lung. Then I was left for over six months just waiting and worrying. Anyway I have had another PET scan and now waiting again. I think I had actually come to terms with this little problem and now if feels as though it is just reared it’s ugly head again. I live in Herefordshire and just feel a little alone

Hi and sorry for not getting back to you but we have been out at our daughters.

It is not that unusual for people to be put on Active Monitoring (Watch and Wait) once they have received their diagnosis. I was on Active Monitoring for 14 years for my type of Lymphoma before it was time for full on treatments.

As for the difficulties getting a clear diagnosis it took a year and 6 biopsies for me to get my diagnosis - Lymphoma is a tricky condition.

Lymphoma can't be successfully 'cut out' due to it being a blood cancer so when treatment is required it can be a mixture of chemotherapy, radiotherapy, targeted therapy and a few others........ the treatment of NLPHL is actually very effective resulting in good results.

There are a few group members with NLPHL so let's see if they are still using the community. 

You can put NLPHL into the search tool  near the top, select 'Anywhere' and this will bring up the older posts and as always you can hit reply and see if the members is still looking in.

All the link I have used are taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and all things Lymphoma.

They run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Do use the support routes above as there is no reason for you to be walking this journey alone ((hugs))

Trying to send but not managing it!

Thank you I will try that