Burkitt 'like' lymphoma diagnosis

Hi John  and welcome to the Online Community but always sorry to see new folks.

There are a number of folks dealing with Burkitts on the site so let's look for them to connect with you. 

Your diagnosis journey will strick a chord with lots of folks as Lyhmphoma can at times be hard to pinpoint, in my case it took over 21 months between my GP and Dermatologist to get a clear hit on Cutaneous T Cell Lymphoma. 

I am sure johnr will be along as he has good understanding of this type of treatment as he has went through it. But over the year I have been on the site I have seen folks talk of issues with IBS so again let's look out for these folks to pick up your question.

Its good that you are doing well and getting on with this new journey in life.

Hi John, from another John, yes I has something similar by way of experience, I had dlbc in my abdomen and small intestine and I also had B symptoms and it all started with severe diahorrea (excuse spelling) for 11 to 13 days and this was followed by severe abdominal pain. Went to out of hours GP and was admitted to hospital as they found a mass my GP had missed, 24 hrs later had a CT scan and whilst I thought bowel cancer they said its lymphoma, 24hrs later a biopsy was done and then the wait to find out the type. Like you I went home on an evening over the weekend as I was admitted on a Saturday. Calling family on the Saturday and Sunday was hard but had to be done.

DLBC can show signs of Burkitts and make it hard to type so they did the right thing by following that treatment plan though it is a tough one.

Re your bowel issue are you taking buscopan, if not ask for it and see if it helps it does me. This now is advice as I am not a doctor, your IBS like symptoms could be IBD, where the bowel does not move in a normal way and can be much slower or inconsistent in how it works, this is what leads to the pains. If you google this you will find a much better explanation, I still have it 9 years on. You may also find lots of mucous being passed to and thats another indictor towards IBD. Whilst it can be a pain at times we are alive and enjoying life on the good days, and if you did have Burkitts rather than dlbc relapse is much rarer and for dlbc its improved a great deal from when I was treated, so enjoy each day as we never know what tomorrow brings

Firstly apologies for the poor grammar and spelling on my original post as that was typed on my tablet whilst in bed.

Anyway, thank you both for taking the time to reply with your experiences and good to hear you are both doing well.

Fortunately I don't appear to have suffered too badly from the potential side effects from the two chemo regimes.  I did manage to get home between cycles to charge my batteries however would invariably end up being readmitted because of either infection of the PICC line or (neutropenic) sepsis.  These small but welcomed stints made all the difference to reminding yourself why we are undergoing this treatment.  I am only left with some peripheral neuropathy in my toes which is a small price to pay.  Fortunately I live only a 10 minute drive away from the hospital here in Aberdeen.

John, your experience with 'IBS' sounds very similar.  I can either have constipation or diarrhea with apparently no real reason why however I have since stopped eating meat (except chicken) and no longer eat anything spicy.  To be honest I don't know if it helps but it seems to!  My whole bowel movement has indeed changed from being almost as regular as clockwork to being much less so.  I am usually daily however the time and (excuse me) consistency can vary. I have definitely noticed mucous when the stools are solid so that again points to IBD/S.  I also note that I almost always have trapped wind which I can release my twisting and stretching my torso.  There is an intermittent low level nagging/stomach cramps which I have most of the time so am keen to understand what medication could potentially help.  My final scan did show signs of diverticulum/diverticulosis so suppose that further supports the IBD is present.  I will certainly request a prescription of Buscopan at my next GP checkup to see if that helps.  

Thanks gents.

Hi John, I should have mentioned I ended up doing some research last year to better understand what may be going on with the bowel and part of that research led to some reports on nerve damage to the intestine following chemotherapy as I to suffer with peripheral neuropathy and you can get neuropathy of the intestine and this is what points more to IBD rather than IBS.

anyway hope this helps, I have tried all sorts of diet tracking and changes and not found the magical cure yet.

John  

Thanks John.

I see there are two versions of Buscopan, IBS or Cramps.  Which version have you had success with?

Cheers.

Did not know that, assume mine is for cramps, they are 10mg tablets - hyoscine butylbromide is whats written on the box, I self medicate so on a not so bad day when it starts I can get away with 1 tablet when I know its bad with the cramp pain I take 2 straight away. Problem is you never know when its going to play up. The self medicating is agreed with the GP by the way, its how I manage all my long term side effects so that I am not on medication 24/7 and only use when necessary. That works for me and I have a great GP who works with me and understands. 

Normal prescription is 2 four times a day, thats what I was on when first diagnosed with lymphoma due to the abdominal pain which was not really linked to the intestine/bowel and stayed on them for 6 months post treatment. Then chatted to GP about need for all the meds, what could be stopped and what could be use when needed. Thats my experience anyway, but do remember I am not medically trained so sharing experience and information, just to put a heath warning on it.

May be worth having a discussion with your GP and agree what is best for your presentation, 

this might help

https://patient.info/medicine/hyoscine-butylbromide-tablets-buscopan

John 

Hello John, as you say you've nicked it. I had burketts, and it is a very hard ride. Codox and ivac seem to be the effective treatments. If they fail you get epoch r. You did great and the good news I am repeatedly told is that burketts is so aggressive that once you get past a couple of months it aint coming back. Did they tell you if you had type a or B..?

   Aftereffects last a long time, you body will be damaged in the affected area, so what you describe does not surprise me although in my case my problems were neck and chest. I'm told 2 years to remove all chemo which was epoch r so a little more aggressive. I still have a lot of tissue damage and side effects. 

   You are doing great, take it easy and smile. Stand in the rain without a hat on and feel alive. 

   Paul 

Hi Paul, I was also told the same about the R-EPOCH that its in the system for a few years. What did not help was my team then went and put a whole bunch of other treatments including some rather strong chemo in to me for my 2 Stem Cell Transplants but as I am 32 months post last treatment I am in hope that its all clear but this must have been a contributing fact with all my winter hospital stays with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Sepsis.

I am also the same with the tissue, muscle and nerve damage in my neck where my brick was but it is slowly improving and my need for pain killers has greatly reduced.

Like you I am am continually living in the moment and for the first time in 5 years I am aloud out of the UK so we are off the Maderia at the end of June.

Morning gents,

Hearing some remarkable stories here which really resonate with me so thanks.

I was just reading my 'condition summary' from my haematologist which states "CT guided biopsy showed high grade B cell lymphoma,  Histological appearances were entirely consistent with Burkitt Lymphoma but no evidence of the MYC gene rearrangement was found".  So assume that to be high grade B cell lymphoma which was Burkitts but without the gene mutation.  I might have to start doing some digging to get greater clarity on that and as a scientist (physicist) I am used to trawling information.

I have made an appointment with my GP for a chat which unfortunately is a couple of weeks away but don't think its urgent.

In terms of medication I completed my chemotherapy in July and stopped all medication in October and generally in myself feel fine.  I go walking weekly and cycle as much as possible so am certainly active. I returned back to work in September which was a huge turnaround in just 6 months! Just what has come about as part of the 'new normal' is bloating after eating.  This isn't usually an issue after breakfast or lunch only dinner.  I'm not sure if its a cumulative bloating after dinner because of the previous 2 meals or its because its a larger meal than the previous.  I find my stomach to be quite bloated then after sitting or lying down for an hour or (after dinner) so it settles.   Become quite 'gassy' which relieves the trapped wind and wake up back to normal.  

My consultant did say he wouldn't be surprised if I did end up with IBS after the lymphoma so its 'good' to hear that other do have similar symptoms after treatment,  Suppose I'm more concerned about the recurrence of the lymphoma as I can 'handle' the IBS type symptoms.  Rather than waiting a couple of weeks I might pop to boots and but some buscopan just to see if it helps.  

Cheers guys.

John