Nodular lymphocyte-predominant Hodgkin's has returned after 12 years . Devastated. . They have decided to wait and watch . This is Messing with my head. Anyone else dealing with this
Hi Helen_S99 and welcome to this corner of the Community although I am always sorry to see you joining us and to hear about your relapse.
I am Mike and I help out around our various Lymphoma groups. I don’t have HL but was diagnosed in 1999 with a rare, incurable but treatable NHL Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.
I have relapsed many times over my years so it’s hard to deal with this especially after you are 12 years on. I was on Active Monitoring (Watch and Wait) a good number of times and yes it plays with the space between the ears……. But I eventually understood it was all about timing.
There are a number of treatments available for you but it’s all about treating at the right time to get the best result.
There are a few folks on the group with your NLPHL so let’s see if they are looking in.
To widen your support you may want to check out Lymphoma Action. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information and online resources.
They also run regular Lymphoma Online Support Groups for patients, 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 Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Always around to help more or just to chat ((hugs))
