Low grade lymphoma

Hi  and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our blood cancer groups.

I was diagnosed way back in 1999 with a rare incurable but treatable low grade type of skin NHL Stage 4a so I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.

You will be stressed and stress brings various challenges. You need to understand that low grade NHL is very treatable with great results.

So a few questions:

What type of NHL do you have.

Ate you going to have treatment or are you on Active Monitoring?

Happy to talk more and answer questions.

a

active monotoring

active monot

Non hog kin sons 

Hi again  Active Monitoring is rather normal at times for low grade NHLs.

It would be good for you could find out the ‘exact’ type of NHL you have as there are a few and we can help better with this information.

Sometimes, lymphoma doesn’t need treatment straightaway. Instead, you might have active monitoring: regular appointments to check on your lymphoma until it needs treatment. Active monitoring is also called ‘watch and wait’ or sometimes ‘active surveillance’.

Where you get accurate information is important so do check out Lymphoma Action, a small, but very active UK Lymphoma Specific Charity who have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service.

Happy to answer any questions you have.

thank you so much mate it’s made me feel a lot better I was lost in my own worry lymphoma buddy is what I need 

Do call the Lymphoma Action helpline on 0808 808 5555 where Sharon or Nic will be on hand to answer your call. You can ask them about the Buddy Scheme - open every week day from 10 til 3.

You will most likely be asked the exact type of NHL you have as this I’ll help them match you up.

Always around to help.

Hi , i was d8agnosed with low grade non hodgkin lymphoma back in jan 2020 and am on active monitoring so i remember that first few weeks following diagnosis. I am nearly 2 years on and feel well and still on active monitoring. I have some anxiety when its neary haemotology applontmemt which is every 4 months but i still feel well. 

I have used the diagnosis to turn my health around and weirdly i am probably fitter now than before. I eat healthily and walk 5 miles every day.

I know its not a cure but i think that as and when i need treatment i will be in a stronger place to start with and its so good for my mental health.

A downside is travel insurance is so high for people with blood cancers

Look after yourself