Hi
My husband has just been diagnosed with follicular lymphoma. The haematologist suspected it was an aggressive Large B cell as the lump came from nowhere and grew big quickly. 5x5 cm on collar bone.
Hes still waiting for bone marrow test. But his bloods have come back good. He knows hes stage 3 prior to bonemarrow test. The pet ct scan also lit up something by his tongue which is going to be looked at. And he has glands in his groin.
Hes waitimg to find out if theyre going to treat or watch and wait with the large lymp on collar bone.
Hes doing really well and has a great positive attitude.
Im quietly terrified and trying to process.
Hoping to get some inspiration and learn some things here.
Has anyone jere ever had issies around tongue?
Good morning Kizzyy and well done navigating across to this group…… your first post in the New to Community area was 12 days ago…… and in Lymphoma diagnosis a lot can happen in 12 days.
You know my story so won’t put that up again….. Follicular Lymphoma is the most common type of slow growing Low-grade non-Hodgkin lymphoma…… and like my first type of T-Cell NHL diagnosed in 1999 these types of Lymphoma are seen as a life long condition……. as my consultant said “Mike, you need to see this as a life long chronic health condition…… look at say diabetes……. The main difference is folks with diabetes are on treatment for life and when it goes wrong, it goes wrong rather quickly resulting in some serious issues…….. slow growing Lymphomas are totally different……. they just get treated as and when required”
The mind numbing thing is that often treatment is not yet required!!!!…… even stage 4 FL at times in not at a position that treatment is required…. so patients are put on what is called Active Monitoring (Watch and Wait) …….. I was often in Active Monitoring.
But should this turn out to be a High-grade non-Hodgkin lymphoma like DLBCL then treatment often happens quicker.
There has been a few members who had Tongue involvement so let’s see if they are still using the community.
This is a challenging time for you both……. remember I highlighted Lymphoma Action.
Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
There are operations to talk with care-givers…… this is so important so do checkout Lymphoma Actions Support Platforms…
There are areas where you will connect with a large group of care-givers as well as patients….with over 5500 members in one area so do check this out……. and you may well bump into me ;) as I have volunteered with LA for a good number of years.
Always around to help out ((hugs))
The confusing thing about low-grade and high-grade is that low-grade like FL is seen as incurable but treatable but the initial aim of treatment for high-grade is looking to cure……. and the treatment may be different.
This was basically my situation with my 2 types of T-Cell (one low-grade and other high-grade) although my consultant will not use the word cure for my high- grade……. even being 9.5+ years out from my last treatment and no further treatment required…… but in my mind it’s cured and my low-grade is fast asleep so I can’t go around kissing princesses;)
You may find these two links helpful as you navigate appointments and look to ask the right questions at the right time during the journey.,,,
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
On the LA group there are more caregivers and family in the group than there are patients……. with much less men than women……. but you will get great support ((hugs))
