Hi everybody. I am still learning quite a lot about the lymphocyte predominant non-Hodgkin’s lymphoma my brother has. And I’m sure there are lots of things out there that I don’t know I haven’t even heard of. I just wondered if anyone had been recommended or is using “my cancer app”. I was recommended my brother use it by a Doctor who themselves is suffering from a form of cancer.
I found it very helpful to understand some of the things that my brother has to keep track of. and it has been really useful for him regards to medication reminders appointment reminders and generally creating a forensic history for him. Has anyone else heard of this or is using it?
Hi 3rdDegreeBB and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I don’t have Nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL) but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma ‘type’ is different I appreciate the challenges of this journey well.
First be carful when searching for information as NLPHL is not a Non Hodgkin’s Lymphoma - it’s a Hodgkin’s Lymphoma - yes very confusing
I have never used the “my cancer app” (but have heard of it) most likely due to me being first diagnosed 23 years ago and had started a very detailed medical folder and note books for appointments so never got round to changing.
My understanding is that NLPHL is rare and like my very rare type of Cutaneous T-Cell Non Hodgkin’s Lymphoma is incurable but treatable…….. but I am 23 years into my journey and living as good a life as any 66 year old can be living (hit my community name for my story)
Getting clear and accurate information is important so this is why I always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars….
They run regular Regional Lymphoma Online Support Groups for both patients and Carers and 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 very good Lymphoma specific 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.
As always I am around to chat and help out as best as I can.
No offence taken, this is all part of developing an understanding of a very complicated cancer.
Although Lymphoma is the UKs 5th most common cancer lots of people have never heard of it.
What makes more challenging is that there are actually over 60 types and subtypes
So what is happening with your brother, is he in treatment? if so what exact treatment is he having ((hugs))
