Early relapse Follicular 3b

FormerMember
FormerMember
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Hi people. I'm hoping someone will be able to give me some hope here.

I was diagnosed in October with stage 4 DLBCL/FL3b. I had six cycles of R-CHOP and have had four of Rituximab, with things popping up on my scan. 

First biopsy showed granuloma. Second biopsy has shown lymphoma. They suspect the Follicular, because it's not aggressive. 

I'm looking at either stronger chemo, a stem cell transplant or a trial. I don't know which they will recommend. They're meeting this week and I'll have another meeting with the oncologist on Tuesday.

Has anyone been in the same situation? My oncologist is confident he can get me back into remission. He tells me it could last for years, but he doesn't know. But that if it comes back there will be other options. Apparently there's a good trial that's only available here (In Australia) as a third line treatment.

My diagnosis was in October last year. This was supposed to be all done and dusted by March. I'm coming up to 12 months and still have no idea how this is going to go.

I guess I just want to hear some positive stories from people who've had early relapses of Follicular lymphoma. 

  • Sorry to hear this new  but as you have been told there are other treatments available and you need to get your team to set out what they think is the best route for you to take.

    I have an different type of incurable NHL (see my profile) and two Stem Cell Transplants (June 2014 and Oct 2015) eventually got me in to remission on the 19 Sep 2016.....the first time in over 17 years so it’s my 4th remission birthday on Saturday and I am living a great life and my granddaughters see this as a good resounding to have cake and put on party dresses Heart eyes

    You need to see that although not what you would have liked, there is a longer journey to follow but the goal had not changed as this is all still do-able. 

    We have had a number of folks with FL post in our dedicated Stem cell transplant group so with having a search in the group.

    Do come back and tell us how things are progressing ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I'm in Australia, too.

    My first suggestion is that if there's any uncertainty at all regarding the specific type of lymphoma, the slides be sent to a hospital with a large blood cancers department for a second opinion.

    I was diagnosed last December and have been in remission since June.  My haematologist told me that if I had an early relapse we'd go straight to trials, so not all of them require two conventional treatments to have failed and they're definitely no longer the last hope of the desperate.

  • FormerMember
    FormerMember in reply to Lolie

    I'm being treated at the ONJ centre in Melbourne, so I'm pretty confident that they're looking at everything. I was initially diagnosed with both DLBCL and Follicular 3b. What's left they believe is indolent, so the FL. 

    I suspect they'll look at a trial first and then a SCT if that doesn't work, but I'm not sure. I did have contact with someone today who's also at ONJ and has had success on a trial for 3b using Ublituximab and Umbralisib

  • FormerMember
    FormerMember in reply to Thehighlander

    Thanks. I'm just so frustrated. I was expecting this to be done and dusted by March. I was diagnosed in October. I had no symptoms at all before diagnosis. I was fit, walking 20,000 steps a day, doing 4 pilates classes a week

  • Over my many years we just had to understand that nothing was certain, to expect the unexpected but most importantly, there is always a next plan Thumbsup

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge