Likely transformation

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I’ve been lurking here for over two years.  Thank you!

I was treated for grade 2 stg 3 follicular with BR, no maintenance, 27 months ago.  Have two new lymph that I could feel and just got results of Pet.  Two very high suvs compared to initial.  Several years ago average was 6 now I have one at 17 and one at 18.8 so very high.  Waiting for biopsy to be scheduled but sick worrying about the future.  Such dismal prognosis online.  I do go to a comprehensive cancer center that has started Car T on follicular but don’t know if that’s an option.  Any input will be so greatly appreciated.

  • Hi  and welcome to this corner of the community but sorry to hear about you going down the treatment route again. 

    From my 22 years on this journey with different type of NHL, with multiple relapses it’s best not to speculate and definitely not to Google ‘what’s next?’

    Most of the information you will find will often take you to worst case information and tends to to be balanced. It is often way out of date and as my consultant always told me “Mike you are a statistic of one so one size does not fit all”

    Yes my prognosis was poor back in 2013 (see my profile) but my team put a plan together that has now had me in remission for coming up to 5 years……. even muu oh re amazing is back in 1999 I was told I would never be in any long term remission…… although my type of NHL is incurable.

    Let’s get all the tests done and they will put their heads together and develop a plan for how ‘your’ condition is presenting.

    Always around to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you so much for your response! I have really gleaned so much from you over the years.  You make me feel better.  Certainly makes logical sense to wait and see plan.  Emotions seem to squash all of my logic. 

  • The battle between our ears is one of the important battles we all have to control. We can’t actually control how our condition develops and what treatment we have but having control of the headspace helps us deal with the information overload that often comes along.

    I had never heard of Stem Cell Transplant until late 2013…… rather scary when I started looking into it but it was the best step for me, let’s see what comes along ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • I had similar. Follicular for a couple of years, then more symptoms. PET showed very high SUV in several places, higher than yours. Biopsy said probable transformation to DLBCL. Treatment with RCHOP. Little bit left in chest zapped with radiotherapy. Complete remission. Did relapse a year or so later. This time SUV 12 and biopsy said follicular. Treated with BR and complete remission.  DLBC part assumed to be cured and diagnosis back to follicular. This time doing maintenance rituximab. I was told that had the BR not worked they'd have assumed the high grade was back and would have changed treatment with different chemo followed by a stem cell transplant. Treatments are far better now and transformation no longer gives the grim prognosis of even a few years ago. You likely won't get rid of the follicular for ever as you know but it's certainly not all doom and gloom. 

    I did research too and found several papers of studies that showed that follicular can present with high SUV.  They used not to think that but now know it to be so. Chemo choice for me that first time would have been the same anyway whichever it was. Good luck.

  • That you so very much for taking the time to explain your situation.  You are a lifeline and really helped my day.  Biopsy is next Friday.  Whatever it turns out to be now I have a bit of hope … I’ve been thinking all doom and gloom.   Glad you are doing well in spite of multiple treatments.  Thank goodness there are multiple treatment!  Big hugs to you!!!

  • Good news...no transformation....much to my surprise.  Will do watchful waiting for a bit (with quarterly CT Scans) and then on to R2.  You were certainly right about high SUV's not necessarily meaning transformation.  This is such an odd disease.  

  • I've been following your story. This is great news! I hope you can put your mind at rest and enjoy life - at least between the scans!

  • Yes, it eases my concern considerably and it was also very helpful for my doctor to discuss the next two to three potential treatment plans.  

  • Hi  great to hear that there has not been a transformation. Low grade NHLs are as you say so odd. I always maintain that my Heamatologist are all more scientists than doctors Wink

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I have just come to the same realization and I'm so glad that they are!