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Gastric MALT lymphoma

Megc345
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Hi I am Megan and have been diagnosed with gastric MALT lymphoma at 17. I was diagnosed in August when I had been taken into hospital with suspected Crohn's disease due to a family history of inflammatory bowel diseases. From an endoscope it showed deep ulceration in my stomach which when biopsies were taken showed the lymphoma.They thought it had initially been caused by H.pylori so gave me a 5 day course of antibiotics. From a recent PET scan and biopsy it showed lymphoma still present but much better ulcers. It has spread further in the stomach. I now have to start chemotherapy with a hope to put it into remission and then potentially a bone marrow transplant if possible. I am just feeling really confused by the whole thing and find it weird I had such deep ulceration. Has anyone been through anything similiar and knows of any treatments to sustain life?

  • Hello Megan and welcome to the forum. 

    I was really sorry to hear about your diagnosis. It sounds as if you've had a tough time over the past 6 months and now to be facing the start of your treatment I' sure it probably feels a little overwhelming at times. 

    We do have some information on our website about MALT lymphoma but I also wanted to highlight an organisation to you called Lymphoma Action. You may have already come across their website but I wanted to make sure you were aware of them as they offer a buddy service and it may be that they are able to put you in touch with someone who has the same diagnosis. They also have a private Facebook support group. 

    You're also welcome to call our team of nurses if you'd like to talk to them. They're back in the office on Tuesday 29th but are usually available Monday to Friday 9am to 5pm (excluding bank holidays) on 0808 800 4040. 

    I hope that your treatment goes smoothly. Do keep in touch and let us know how you're getting on nif you feel able to. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Hi, 

    Yes I have felt very overwhelmed and had some quite bad days struggling to get my head around this diagnosis. Yes the buddy service sounds like a very good idea. Do I just email the lymphoma group to get that sorted? Thank you for all the information I might consider phoning a nurse. 

  • in reply to Megc345

    Hi Meg

    I promise you're not alone in struggling to get your head around the diagnosis. It's something that so many people experience when they are told they have cancer. I think that often this aspect gets a little easier once your treatment starts. 

    Information about how to contact the buddy service can be found here. It looks like you need to call them to get things organised. 

    Do give one of our nurses a call for a chat if you want to. They really are lovely :happy: and I'm sure they will be able to offer you some support and advice. 

    Keep your chin up. There's lots of support here for you. 

    Jenn
    Cancer Chat moderator 

  • Offline

    Hi Meg,

    I am 26, just had a scope due to stomach issues and got 10 biopsies taken. Scope showed I have gastritis. On the report the consultant has put done that the biopsies were taken for suspected MALT. I've even googling and getting myself all paranoid. I've just came across your forum. Wondering how you are and what treatment you got? Can't seem to find any other forums regarding MALT.

     

    Thanks.

  • Offline in reply to lfinlay0212

    Hi,

    I am doing well.

    The first line of treatment I had was antibiotics for 5 days because it was believed that my gastric MALT lymphoma may have been caused by an H. Pylori infection but unfortunately this didn’t work so I had to do chemotherapy. I finished my chemotherapy about 3 months ago. In the end I received chemo tablets which I took for 2 weeks and then had 2 weeks off as well as rituximab which I went into hospital to have once a month. This was an infusion the first time and then for the remainder of my treatment I had it as a subcutaneous injection. I did all this for 6 months. Overall this treatment was tolerable there were side effects such as headaches, nausea and tiredness but I was still able to study for my A-levels getting the grades I wanted and was still able to apply for university of which I now have a place to study next year. It is important to remember everyone is different and how we all handle things like treatment will be different.

    I completely understand how you are feeling with regards to googling everything I was the same when I was first diagnosed and at Christmas when I found out my antibiotic treatment hadn’t worked. I found it really difficult to find information about people that had had my cancer and I think that made me feel worse as I felt that I just couldn’t relate to anyone. I was confused on why I had this cancer as I always lead a healthy lifestyle and from the reading I did online it didn’t seem to affect my age group as much but these are all things I learnt to deal with. I am in a much better state than I was when I wrote that earlier post in December as things do seem to get better with time. From my understanding I am not cured but I am in remission and my last scans 3 months ago and recent biopsies show that I am cancer free. There is a possibility my cancer might come back in the future but the way I have learnt to deal with this is by taking each day at a time and trying not to think about what I have got.

    I know how daunting it can be waiting for a diagnosis and waiting to see a consultant so I thought I would just give you some ideas of what I did to distract myself while waiting for results. I went to the beach and had fish and chips, I went for walks with my friends with take-away coffee, focussed on tasks such as my university application and I also enjoyed cooking and baking. A lot of my ideas evolve around food but I can’t deny I am a foodie!

    If you have any further questions or just want someone to talk to who has been through something similar then please do message me. I also have an Instagram page where I talk about my journey with cancer and the major milestones of it such as fertility treatment and dealing with uncertainty. I can send you a message with how to find it if you would be interested? I am wishing you all the best and you will be in my thoughts.

  • Offline in reply to Megc345

    Hi,

    Thanks for getting back to me. I'm glad your treatment went well. I had the antibiotic treatment a few months ago as I tested postive for H Pylori however tests now show I'm negative. So unsure what they'll do. I'm trying my best not to Google which is why it hasn't taken me so long to reply. Can I ask how long your biopsies took? I was told within 10 days however I am still waiting. I would love to have a look through your journey on Instagram. 

     

     

  • Offline in reply to lfinlay0212

    Hi,

    Sorry it has taken me so long to reply. Yes probably best to not Google. I think my biopsies took maybe 1-2 weeks to come back but it does vary. I will private message you my Instagram to have a look at if you want to. I am wishing you all the best.

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