Burkitt 'like' lymphoma diagnosis

FormerMember over 5 years ago

43 replies
37 subscribers
75624 views

Hi everyone,

I wanted to share my experience to see if anyone has been though similar.

Last February over the space of a couple of weeks I noticed my stomach began to become distended. I went to the docs and was referred to hospital who xrayd me and said I was constipated so prescribed some laxative and discharged. After a couple more days I was much more distended and uncomfortable so went back tongue docs who immediately sent me to hospital. This time after a CT scan the doctor came to my room where myself and wife were waiting and told be I had cancer. They thought it had begun in the bowel and then spread to my stomach. As you can imagine this came as a complete shock as up to this point I had been a healthy and active 44 year old man.

After being given the news I was moved to the oncology ward where the consultant came to see me and went to great lengths explaining what I had.. Essentially it was like having a carrier bag with lots of sausages in and sprinkled porridge oats in and given it a shake up. In other words it was everywhere and any treatment I would receive would be palliative. On being given that news I was let home for the weekend to come back on the Monday for a biopsy. That weekend was terrible, I'm not sure how we got through it but we did probably the distraction of my 4 year old daughter.

Anyway, I had the biopsy done then spent the next fortnight doing wills and planning as best we could for my wife and daughter.

Then, out of the blue, I had a phone call from the oncology consultant telling me what they thought I had was wrong and one of her colleagues would call me. Literally 2 minutes later my 'new' consultant said right, we known what this is and we can treat you so pack a back and get here now, so that what I did. That evening I met my consultant who explained that I actually had lymphoma and they would start with the treatment the following day.

As we were about to start I had a stomach drain fitted and over 2 days 12.5 litres of ascites was drained off then we started. I had B symptoms (sweats, fluid, weight loss) and was classed as stage 4.

I began the RcodoxM and RIvac regimes which pretty much of me in hospital for 4 months. The mid way scan was 'dramatic and astonishing' as the lymphoma had pretty much already cleared however my consultant and I agreed to continue with the last 2 cycles. My scan after the treatment showed me to be in complete remission and that's where I am today.

I am still undergoing checkups every 8 weeks however after the next in June they will goto 12 weeks! There was always some ambiguity about my diagnosis as they couldn't fully agree whether it was pure Burkitt or Burkitt 'like' as I didn't have the myc gene mutation. My consultant did tell me we can either treat your for DLBCL with Rchop as a day patient but recommend a belts and braces with the full RcodoxM and Rivac.

Generally in myself I am well and don't appear to have had any to long lasting side effects of the treatment with the exception of what I think to be IBS. Because the lymphoma was centred around my bowel and stomach I do find it to be far more sensitive and tender than before and quite often have a low level nagging pain which I'm trying to control.

Has anyone else undergone similar treatment and been left with IBS like symptoms?

I'm back to walking, cycling and generally living life like 'I nicked it' but would appreciate to hear if anyone else has had a similar experience.

Thanks.

John

Thehighlander over 5 years ago in reply to FormerMember

You are doing great JohnC and I am rather pleased that I did not have the issues that you folks have had, my ones were rather different.

This paper by Dr Peter Harvey - Life after Treatment is good sit with a cup of Coffee, or up in the Highlands a Single Malt and have a look through as it does sometimes highlight or help the post treatment journey.

Sun is out up North so away to our granddaughters for a BBQ

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 5 years ago in reply to Thehighlander

Hi,

My mum has been diagnosed with Burkitts she is 68 and was also diagnosed with IBS until it was advised, a bone marrow biopsy should be done. This is where the Burkitts was found. My mum is likely to be having 6-8 rounds of chemo and several intratheacal chemo injections. As much as l have been told how aggressive and rare this type of cancer is. I believe it is also responsive to treatment. I hope your the side effects settle down. Wishing you and your family all the best.

Leah

Thehighlander over 5 years ago in reply to FormerMember

((hugs)) Leah to you and your mum.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 5 years ago in reply to Thehighlander

Evening all.

Leah, the regime I underwent was bone marrow biopsy which was clear as was the CNS fluid biopsy. However as part of the treatment I did receive intrathecals some 12 or so if I remember correctly. As tough as it is it's a small price to pay.

I have been feeling very bloated and tired for the last couple of days so was marched to my GPs by my wife at lunchtime. She examined me and took bloods and the examine she wasn't concerned by so will hear back on the bloods on Monday.

She did prescribe me mebeverine which I've taken one of already and appears to be helping.

Have a fab weekend all.

John

FormerMember over 5 years ago in reply to FormerMember

John, Bless you it's sounds like you have been through it. But from what I have read it seems like you are doing really well. Which I am really pleased to hear. It seems to me like a rollercoaster of emotions and different symptoms that people suffer with.But looks like you have a great support network.My mums had about four intratheacal lots of chemo but has been told there will be plenty more. She started her 3rd round of R-chop yesterday but has been told her blood count is more robust than they could have hoped for, having been knocked constantly through chemotherapy drugs.

Best wishes,

Leah

FormerMember over 5 years ago in reply to Thehighlander

Thank you Mike you are such a lovely person

FormerMember over 5 years ago in reply to FormerMember

I have just finished the first cycle of chemotherapy for the burkitts lymphoma ,it was only diagnosed 2 weeks ago ,following a visit to the doctors for a swollen gland, the original thought was it was a head and neck cancer, following fine needle aspiration ,ultra sound biopsy, the diagnosis was changed,I was admired following my first lymphoma clinic outpatients clinic , I have nothing not praise for the NHS, I am told that the aggressive growth of the lymphoma makes it very treatable which gives me hope for the future , having done all the getting things in order for the future business

I wish everybody the best for what ever the future holds ,I am grateful beyond words to my wife who has helped me no end , if this is ment to be part of life's journey ,well I just wish that I can keep hold of the day nav to get me out the end

Thehighlander over 5 years ago in reply to FormerMember

Hi and welcome to the Online Community.

Good to see that your team were on the ball and have been able to get your treatment started. If we can help you out in any way the best way to do this is to start your own thread by hitting the 'Start a Discussion' tab and post away.

All the best.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

johnr over 5 years ago in reply to FormerMember

Hi Oxfordbloke, the are a small number of burkitts patients who check in now and again, so hopefully they will see your post and share their experiences.

Did they diagnose you only from the fine needle aspiration or did they do a full biopsy ? the only reason I ask is its hard to diagnose from an FNA and typing lymphoma is an art and an excision biopsy is the gold standard.

let us know how you go

john

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

FormerMember over 5 years ago in reply to FormerMember

OxfordBloke, sounds like you and I are in exceptionally similar positions!

I have just finished my first round of R-CODOX-M for Burkitt Lymphoma and have another two to go. I had a tumour in my neck and soft palate which took some time to get diagnosed as lymphoma too. Hair started falling out today.

Can also say my girlfriend has been with me every step of the way so can relate to what you said about your wife too! I don’t know what I would have done without her.

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Burkitt 'like' lymphoma diagnosis