Recently diagnosed

FormerMember
FormerMember
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Hi 

I’m a 37yr old mum of 5 (eldest is 13 youngest 18months)

let’s start with how I was diagnosed I was taken to hospital with pains in the chest which they said was a bad acid reflux attack (had this for around a yr) I came home tired low energy constant headache and just not feeling well or myself so pushed my Drs for a week until they relented and booked me bloods. My ca125 was high as well as some other things so booked me for a full abdo scan day after I had bloods back I was rushed to hospital with severe dehydration due to vomiting and not being able to keep anything in and pain in my abdo. After scans etc they found it the dreaded c word we all hope we never hear

so now here I am I’ve just done cycle 1 of obintuzumab and bendamustine to which after 3 allergic reaction to the obintuzumab I will now be on Rituximab next week 

can anyone tell me their experiences of r-benda or even follicular lymphoma or even how the Maintenance left you? 
im stage 4 (in bone marrow as well as a lot of other places) grade 1/2 flipi score 2 (no idea what this means until I speak to someone next week) 

many thanks stay safe stay positive 

  • Hi  and welcome to the Community. Sorry to hear about your journey to diagnosis and you eventually being told it is FL.

    You journey is actually not that unusual as blood cancers like FL are hard at times to pinpoint.

    I have a different type of skin NHL, diagnosed way back in 1999, been through a lot of treatment and now 4 years in remission, more amazing in that when I was first diagnosed I was told incurable and you would never be in remission.

    There are others who are on these treatments so let’s look for them to pick up on your post.

    I had Rituximab as part of my R-EPOCH and did ok with it. R-EPOCH was an aggressive treatment so I was in hospital for 5 nights/days on 24/7 for 120hrs for each of my 6 cycles but you can hit my community name to see my story.

    These are some useful links for you to have a look at

    Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.

    Fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue.

    Avoiding Infections obviously is very important but you will totally get this during these challenging times.

    I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.

    Always around to help out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    Thank you yes I have been told retreatable with good remission success rates but not cure able. I am glad you have achieved remission and hope that this lasts for many years to come. 

  • Hello Gem19

    Sorry to hear you had such a grim time!   It sounds really alarming, but good that they found your diagnosis quickly.

    My GP suspected I had FL 2 years ago this month, after one little lump under my jaw.  Anyway, turned out to be Grade 4 FL, with my hip bone in a real mess.  We think it might've been there for at least 6 years as it was clear on a routine DEXA scan at that time.  My old GP couldn't get his mind off the idea of osteoporosis, which I don't have.  So I got vitamin D for the next few years and no further investigations.  It's not at all unusual for signs to be missed as lymphoma can present itself in many different ways.   I did a circular route through dentistry, ENT and orthopaedics before I got my GP's tentative diagnosis confirmed and this took another 6 months!   Even this isn't that unusual. 

    The delayed confirmation and starting treatment meant that I read loads about lymphoma before I saw my consultant and was ready to talk treatments.  I was given Rituximab & Bendamustine.  It was OK, but I'm horribly allergic to Ritux, so needed hydrocortisone and a heavy dose of Piriton each time.  R&B are powerful drugs!  My body was clear of disease, except for my hip bone, when I'd only had half my treatments.  By the end, even the hip bone was clear.   I'm 18 months down the the line, disease free but realistic that it might come back.  I feel well, but my immunity hasn't quite recovered yet so I'm shielding from Covid.

    So, even Grade 4 seems to be perfectly treatable with a good outcome.  You will feel knackered from time to time, but this gets better.  You'll need to avoid infections.   People here have sound information to share and it helped me a lot.  Life goes on!

    Best wishes for a successful treatment!

    Cecren