Hello I’m New to this

Hi Warriormum52 , I'm Jean ( Gypsy rover) welcome to the group , we're all in this together & help each other , Your terminology is ok , when I was told the news I was already in hospital for 2 weeks by the time I was told , I learned that it was a High grade B cell lymphoma , after the biopsy that's what told them it was Burkitt's lymphoma , I was transferred from my local hospital to one that did haematology as an inpatient , where the Queen Elizabeth hospital , Glasgow became my home for 14 weeks ,  My chemo was intensive I had 4 cycles of chemo which was RCODOX & M/IVAC , I went into hospital on 30th May , diagnosed on 13th June the 17th I was transferred to Glasgow to start my chemo.. I finished my treatment in September , PET Scan on October & now in remission & on 3 monthly appointments with my consultant... Good luck on your chemo journey 

Hi Warriormum52 and a second welcome to this corner of the Community but I am always sorry that folks join us. I am Mike and I help out around our various Lymphoma groups.

I was diagnosed way back in 1999 with a rare, incurable but treatable low grade NHL Stage 4a (CTCL) so although my lymphoma ‘type’ may be different from yours, I know this journey well.

Until your clinical team has all the information together and reviewed you are still basically in the waiting stage. There are indeed a number of different types of B-Cell NHL….. in-fact there are over 60 different types and subtypes of Lymphoma this is why it takes so long to get a clear diagnosis as it needs to be spot on.

As you read through the various posts and some of our profiles (hit our community names to see them) you will see that our treatment journeys can be vary very different.

From receiving a straightforward treatment regime that requires minimal attendance at Hospital to others who have had a more involved treatment journey resulting in hospital stays.

It’s important to know that long hospital stays are not the normal route so take a breath.

As to treatments there are a lot of different combinations of drugs that can be used. But these are chosen specifically for YOUR specific presentation. You will be given a stage number. I was stage 4a. The stage number is based on where the Lymphoma is presenting and the A in my case was because I had none of the normal Lymphoma signs like raised lymph nodes, night sweats….. if someone has any of these they would be showing B symptoms.

Very important to ‘get’ that unlike other cancers like Breast, Kidney, Lung…… where a Stage 4 is a very poor prognosis…. in Lymphoma it’s not, it’s mainly used to identify where your Lymphoma is presenting, what is the best treatment that needs to be used and for how long,

You need to be using a good source for getting information, this is very important so no random Google searches. Could I recommend you have a look at the Lymphoma Action website.

Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of very reliable information, videos and run regular Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

The group is here to walk beside you and help you navigate this - no question is small. Clear information is important ((hugs))

Hi just to add to the good advice already given is to know that the treatments are normally very effective and in some high grade types like the one I had DLBC (diffused large B cell) they now talk about cure, which was not the case 15 years ago. I was treated back in 2009 and am part of the group considered cured.

Do let us know more when you do

John 

Hi Warriormum52 I'm new to this too was diagnosed last October with Burkitt lymphoma, after having two blood clots on my lung. These came from the lymphoma growing in my stomach. After 3 months in hospital with 4 cycles of chemo had my Pet scan which shows that all lymphoma has gone but 2 small areas on my liver and rectum, which my consultant thinks is scar tissue. I have to wait 10 weeks before I see my consultant again after another pet scan. Staying positive that the next time I see him it will be that I'm in remission.  I couldn't believe how fast everything happened the lymphoma growing and then the chemo taking it away.

I've searched on here and couldn't find many people with the same disease.