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Aussiepam

Aussiepam
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Hi, I live in Australia, aged 72,  stage 3 to 4 multiple abdominal follicular lymphoma diagnosed 3 1/2 years ago. Have been on watch and wait as it was accidentally found, so diagnosed early.  Have found a lump near the breastbone. scans not clear, but almost certainly a lymphoma. They have now all doubled in size, largest now 4.4 cm.  

I have some non deliberate weight loss, 2 1/2 kilos,  but unsure if external, severe worry has caused it. I don't normally loose weight with stress. No night sweats or unexplained fevers.

Now awaiting a hospital letter to try and get on a trial in its third phase.

Have  been living in a positive phase thinking my good asymptomatic lymphoma would go on for much longer. So stirred up a bit now.

 

 

 

 

 

  • A warm welcome to Cancer Chat Pam.

    I'm sorry to hear you have stage 3 to 4 multiple abdominal follicular lymphoma but I'm glad it was diagnosed early. Stressful situations such as these may have contributed to your weight loss but if you are concerned it may be good to speak to your doctor as they will be in the best position to let you know what the cause may be and if there is anything to be concerned about.

    I have found two other members - [@Gillian99]‍ and [@nhl-newbie]‍  - who have had a similar diagnosis to yourself and now that I've tagged them in this post I'm sure they will pop by soon to say hello and share their advice and experiences with you.

    I hope you don't have to wait too long for that hospital letter and that you are able to get on the trial Pam. Let us know what happens, we'll have our fingers crossed you're successful.

    Kind Regards, 

    Steph, Cancer Chat Moderator

  • Offline in reply to Moderator Steph
    Thanks for your reply. I am still awaiting the letter. If I haven't got it by tomorrow I have to call my haematologist. Look forwards to hearing from the other two members. I have tried to find a chat room in Australia, but the only one that comes up is basically for women's cancers, doesn't cover lymphomas. I guess population wise we are small even though there are a lot of us with lymphoma. The other worrying thing about Australia is we lag a LONG way behind UK, USA and Germany in approving drugs, particularly for follicular lymphoma. It's the most common type, so would cost the government more. The Leukemia Foundation runs a Melbourne Symposium annually, and I met a lady with FL who has cashed in her private pension, sold her home and now waits to die. The maintenance drug which I think is also used in UK is not funded here. She's had an injection every three weeks at the cost of 4,000 pounds a time
  • Offline in reply to Aussiepam

    Hello Aussie Pam,nice to meet you sorry for the slow reply I've not been on here for a while.

    How are you?

    I will tell you a little about myself..I am 42 years old with a 17 year old daughter single mum. I was working feeling fine active busy mum when I found a lump in my left groin area in the shower I left it a week before going to the doctors as I thought it was through lifting at work, physical job.

    Dr thought it was probably due to an infection as the lymph nodes do swell when fighting any infection. But sent me for an ultrasound scan which they told me nothing afterwards,next thing 2 days later I got a letter asking me to go for an MRI scan which I did same again told nothing,then 4 days later a CT scan and a groin node biopsy in theatre and a bone marrow test (ouch).

    I waited an agonising 6 weeks for the result where I was told I have follicular lymphoma stage 4 it's in my bone marrow too there is no cure for this but I started chemotherapy 5 days later and I did 2 full days on bendamustine and Rituximab for 6 cycles it wasn't pleasant by no means but I had to do it. In October 2016 I had a CT scan and was told there is no evidence of disease!!!

    I'm in remission and at Christmas I started Rituximab maintenance for 2 years now which is ok compared to the chemo I had I get very tired but eating and drinking well and starting to get out more now as before I was in isolation all 6 months I was neutrapenic and hospitalised for it so at the moment I'm doing fine,4 months in Remission so far so good. 

    It's very scary, worrying but there is hope keep positive pam.

    Let me know how things are going for you and always welcome on here to discuss any worries or questions you may have there are alot of people in the same boat.

    Wishing you all the best! 

    Gillian

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