Dlbc burketts lymphoma

Hi Prinslot 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 Burkitt lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin's Lymphoma (NHL)  eventually reaching Stage 4a in late 2013 so although my NHL ‘type’ is different I do appreciate the challenges of this journey rather well.

The link above will take you the Lymphoma Action website and if you look through the link it will show that there are lots of different types of lymphoma. Burkitt lymphoma is type of non-Hodgkin lymphoma (NHL) that develops from B cells.

Burkitt Lymphoma is one of many types of NHL that fall in to the group of fast-growing (high-grade) lymphoma and these High Grade NHLs can have different names.

My type of NHL is a Low Grade T- Cell NHL and again there are many different types of Low Grade NHLs....... and most of these are incurable but treatable and are seen as a life-long chronic condition - it can be very confusing.

Normally the aim is to treat a High Grade NHL to cure........ but there is often 'other' health issues that may not allow this to happen as the treatments used have to be very strong so there has to be a balance as to what your mum's body can deal with affecting the end result.

How old is your mum?.....

Has she 'other' health conditions?

NHL can appear in any area of the body all at the same time....... and unlike other cancers, this is not a secondary cancer (Metastases)..... it's all the same cancer in different places.......

If it is presenting in her brain it may well be called or re-classed as CNS Lymphoma

I am sure that you have lots of questions so do ask them and the group will do its best to help you out.

Oh I can't thank you enough for your response ,I'm so grateful I find it all overwhelming .I am sorry to hear of your lymphoma ,you certainly seem to know your stuff .my mum is 74 with no major health issues other than blood pressure which she medicates .I'm glad ypy mentioned its mot secondary cancer its all the same cancer as that wasn't made clear .

I am pleased my post has helped….. Lymphoma is a very complicated type of cancer but at the same time is the 5th most common cancer in the UK after breast, lung, colon and prostate cancers….. but most people have just never heard of it.

Consultants look very closely at all aspects of health regardless how small and age as some drugs used are very very strong to the point that they can do significant damage….. it’s can be a very fine balance how much treatment can be used.

I ended up with a life long heart condition back in late 2015…… resulting in a heart attack last April but a few stents later I am living as good a life as any 67 year old can live (you can see my full story through the link at the bottom of my posts)

Lymphoma can indeed turn up anywhere in the body but the treatments used are designed to reach everywhere…… remember where the Lymphatic System and Blood goes so can the Lymphoma.

My journey has been long and very hard but I have to say that many people I talk with including some very good friends have a far worse journey than myself.

I have had 23 years to learn all the terms and have had time to understand lymphoma. The Lymphoma Action website is your go to place for information - stay away from random Google searches…… it’s not good for you….. I also volunteer for Lymphoma Action in their support platforms.

Have you been told the name of the treatment your mum will be getting?…… these treatments are often described as acronyms….. I had R-EPOCH with each letter being the first letter of the drugs….. well most of the time.

I will also say that in Lymphoma Staging is nothing like in solid tumour cancers where a high stage number of stage 4 is a poor prognosis…… in Lymphoma it’s not as it is used to identify where the Lymphoma is presenting, what treatment is best and for how long…… I was stage 4 in late 2013 but this made no real difference to the outcome.

Always around to chat and help you navigate this rollercoaster ((hugs))

 Thehighlander 

I am so glad to hear you covercame your heart attack ,you are obviously a remarkable person ,your help on this matter is invaluable ,I would love to keep in contact via this forum to learn more as I go along .I'm pretty sure she has on a letter what chemo drugs are going to be used I will find out .she's having injections for her immune system then she will have a central line put in then her first dose of chemo .I'm sure I will be picking your brain again soon 

All the best .Elaine.

Hi Elaine, see you have had some great support from Mike I see you are confused by the letter and the type of lymphoma, I would see if your mum will let you speak to her consultant or specialist nurse to clear up what type it is. I say this because sometimes it can be difficult to differentiate between DLBC and Burkitt's and I have know a few people where they could not be sure and their diagnosis was DLBC (Burkitt like). Hope you get some clarity. Hope treatment goes well and she hears those magic words in the near future... remission 

John 

Thank you John. To be honest I'm struggling to get any clear answers about anything from them .

Hi Elaine, the best advice I can offer is similar to that above you need your mums records to be mark as she has given permission for the consultant and her team to be able to discuss her details with you. That way you can ask all the questions you need to to get some clarity. Hope that helps

John