High Grade NHL B cell possibly Burkitts

Hi John  and welcome to the Macmillan Online Community but sorry that you had to find us.

Your dad's diagnosis proccess is still to be completed and a treatment regime put in place but the delay of a few days will not make a big difference to the big picture of things. An accurate diagnosis is so important to ensure time is not wasted going down the wrong treatment route.

Blood Cancers are very treatable and should not be seen in the same light as sold tumor cancers. Once the treatment is started, most likely chemo it goes straight to work and melts the growth areas away.

This is a link to our information pages on NHL.

Please get back to use once you have firm information as we will be happy to give you support.

Hi John, not your fault but the are some gaps that need filling in so we can help, has he had a previous scan or some sort of biopsy? without that typing the lymphoma is a challenge and given the Marsden is involved thats a surprise. Though in cases where a biopsy cannot be taken they may use a BMB to try to type the lymphoma form the cells that are present, assuming they are.

Burkitts and DLBC can look similar and hard to distinguish so sometimes they say its DLBC with Burkitt like expression.

Re stage don't worry it is just used to inform the treatment plan, re chemo starting soon, I went 4 weeks between finding I had lymphoma to it being typed and to a treatment plan being put in place. They will though need that scan so they have a baseline as the check back against that scan at the end of treatment to confirm remission.

If you can let us have the full history then we can help more

john

Thank you both for the replies.

I am going in to the hospital to see the consultant when he does his rounds today at 10 so will look to get more information.

They haven't done a complete diagnosis yet, they only say its high grade DLBC with Burkitt like expression and they know it's aggressive.  They think it could be doubling every 25 hours.

He's had a few blood tests, ultra sound and the marrow biopsy yesterday and only one result back from Marsden re the marrow, hoping for more and definitive diagnosis today/tomorrow.

They can see a mass near the aorta and his spleen is enlarged by 3-4 cm and he also has slight weakening in his kidney function.

At the moment, I am just trying to gather as much information so that I can try and understand what is going on rather than just nodding at the consultant when it feels like hes talking to me in binary.  Luckily my wife is a cardio thoracic nurse and my mum a former nurse so they understand the terminology much better than I do.

They have said that if he deteriorates at all between now and the results and PET scan they will give him a light chemo that will not be the same as the final chemo treatment just to nullify any further growth.

It's comforting reading some of the stories here though and the positive outcomes at the end of them.

Thanks for all the support and advice.

John

Thanks for the info, given his mass is near the aorta then a biopsy may not be straight forward so it may be they go by the cells in the marrow biopsy. Both types are treated in a similar way, some with Burketts may receive an additional drug call etoposide which hits it a bit harder and is called R-EPOCH.

As you learn more let us know and we can hopefully help and offer some advice and support.

John  

Hi again John, his team are getting all the jigsaw pieces together and will hit it once a definite plan is put together.

My brick sized mass presented on my neck, it grew to the size of a brick in a good 5 weeks but my team did not rush into treatment. I was given a 15min blast of Vincristine 7 days before our family Christmas and 3 days later I started my chemo. So it was a good 5 weeks before the main treatment started from the point the mass started to grow. I was in a lot of pain and was on very powerful meds but they did explain that they had to get it correct as they did not want to waste time and go down a dead end and over treat me.

I had the chemo regimen that John has mentioned. R-EPOCH was given over 6 cycles of 120hrs continues IV with 3 weeks between each cycle. It was a hard slog but I have to say following the first cycle I was seeing and feeling the positive effects of the treatment........ and the rest is another story. There are some very encouraging stories on the forum and you can see them by hitting the forum names.

I was talking to someone else on another thread and suggested that a family note book is a great way to keep everyone's mind in order, reduce stress and helps the sleep patterns is a note book where you keep a record of all the questions that are coming to mind - those questions that come at silly-o'clock!! - write them down and ask his Consultant or his SNC. 

Get back to us at any time as one of us will be around to help out. Please remember that we are not medically trained but we do have is our very own blood cancer stories.

So my dad was transferred from Hematology to HDU as his breathing has become very laboured.  They think this is due to a build up of lactose acid (acidosis?) and they have now put him on dialysis.  This has caused the PET test to be delayed for a week to 10 days but they have decided to start him on COP today to try and just halt any growth of the cancer whilst his kidneys improve.  He has also started on steroids yesterday, prednisone.

They are still waiting on the bone marrow biopsy results from Marsden and this will finally give us the full diagnosis and then treatment will start properly after that with either RCHOP or R EPOCH.

I'm finding this quite frustrating at the moment.  The nature of the cancer means that things seem to be changing non stop and everytime the doctors give us a plan it seems to change an hour later as different issues come up in his body.  I guess it just take a change of mindset for me to understand that whilst they will set out a plan of action this could change at any second.  It's just so frustrating to think right we have a plan, this is what hey are going to do to then be told when you get home that everything has all changed again.

Hi again GoldenBum, I have been on my NHL journey for over 19 years and the one thing I had to get used to very quickly was the speed that 'The Plan' changes.

You will latch onto 'The Plan', you will start to work it out in your head, do some research and you think you have it all in a box that you can work with then 'BANG' the plan changes. It is so frustrating but it is the nature of the journey.

Your dad has other medical issues so his team will be prioritising the most urgent ones first. As we have said his NHL treatment can be delayed and some temporary 'hit' can be given but its important to get him stable as the journey with RCHOP or R-EPOCH can be challenging at this age.

But this every changing plan will not go away. The secret is to keep ask questions as to why the changes are taking place and when will he get back on track to get the full treatment. This information helps you and the family to get some order in your minds and feel that you can go forward with this.

My first 15min chemo 'hit' was mind-blowing. My jaw was seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted. I got the 'hit' at 11.00pm and at 11.30 my jaw was moving and at midnight I asked for tea and toast.

Hang in there.

We now have confirmation that this is burkitts lymphoma. At the moment his lactate level is 12 and needs to get down to below one. The cancerous area is around the bowels and stomach area and not spread upwards.

He has had COP yesterday as a holding chemo and when he stabilises in terms of breathing and kidney function he will start an intensive course of codox m ivac.

We have the choice of Marsden Fulham or George’s in Tooting. Both very good for burkitts, marsden better for the cancer but George’s better for the all round medical care.

They may filtrate him now to get the lactate down too.

I’m glad we have a diagnosis but this is going to be one long hard slog for him. 

They drained 2 litres of ascites fluid from his stomach and will look to drain up to another 6 litres today. 

Hi again, it's always good to have a peg to hang your thoughts and plans on. With this you can start to get a picture of the plan of how this can be overcome. My understanding of Burkitts is that it is aggressive but very treatable so its get your dad stable and into the position of having the intensive treatment. 

It's all about putting your trust in his team then trying to keep up with what is actually happening.

I can never understand how it is possible for the body to produce and keep so much fluid but let's look for this to be achieved and progress made.

Hello golden bum. I have been watching your thread and waiting. There is a type called type B burkitts. Not sure what you refer too. This is a tough challenge. It is generally high grade and grows quickly. If it is high grade type B, then even if it is refractive, it can be survived. I survived it. The treatment is harsh and very manageable. The plans jump around, the mission does not change. At this stage my thoughts are, stay fit, eat, drink sleep and stay sharp. The nurses and doctors will guide you through the process, they are angels.