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Thread: Newly Diagnosed low grade follicular NHL stage 3.

  1. #21
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,324
    As you know typing lymphoma can be difficult at times, the number who have been misdiagnosed and then had the type changed seems to be increasing, based on posts on the various forums, so best they are sure they know what they are dealing with and you get the right treatment.

    hope its not a drawn out process and the push you through as quick as possible.

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  2. #22
    Experienced User
    Join Date
    Oct 2013
    Posts
    73
    Absolutely I would rather they be certain before any treatment starts.
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  3. #23
    Sorry that things are not as you had expected. I did the treatment plan they suggested. Now I am kinda in denial that it could be back. I think I have not had a cat scan in over 3 years. I just quit getting them. I see my oncologist for a brief visit once a year now for a chat and blood test. I can think of a half a dozen reasons to go get checked out from head to toe but I guess I need time to recover from the last treatments. I hope things improve and if you start treatments soon I hope they are easy going.
    Age 55
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  4. #24
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    HI Simon

    From what you posted it looks like they just did a core (?) needle biopsy. Considering what is going on and the good possibility of Hodgkin's on top of fNHL, I would, without a doubt, get a excisional biopsy to confirm. And even then consider sending it out for a second opinion on the pathology. This is tricky stuff. Core needle is not sufficient. I don't know about fnhl but I do know that ABVD is the gold standard for Hodgkin's and it has a 80-90% cure rate with ABVD alone. Best wishes and all good thoughts. Keep us posted! -VMarie
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  5. #25
    Experienced User
    Join Date
    Oct 2013
    Posts
    73
    Original FHNL diagnosis was from an excision biopsy, from what I understand the diagnosis with a full node is easy as it is so distinctive. The hodgkins diagnosis was from a needle biopsy and again from what I understand is that if a certain type of cell is present then it is hodgkins, and that cell is "easy" to identify as well.

    had my second biopsy yesterday on one of the other nodes they are concerned about, get the results next week and then treatment decision after that with a bit of luck.
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  6. #26
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Hi Simon,

    They are looking for Reed-Sterburg cells to confirm Hodgkin's. But it is *not* always easy! My son was misdiagnosed by two separate pathologists as having T-cell cancer (ALCL) when, in fact, he has Hodgkin's.
    From what I know now, I would never, ever accept a needle biopsy for a diagnosis. There is someone else on this forum (Chef) who was initially misdagnosed and told he had Hodgkin's and it was treated as such - when it was actually ALCL.

    <<some ALCL may mimic less aggressive classical HL histopathlogically. It may be misdiagnosed unless careful immunohistochemical examination is performed.>> https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4746845/

    Quote Originally Posted by simon_h View Post
    Original FHNL diagnosis was from an excision biopsy, from what I understand the diagnosis with a full node is easy as it is so distinctive. The hodgkins diagnosis was from a needle biopsy and again from what I understand is that if a certain type of cell is present then it is hodgkins, and that cell is "easy" to identify as well.

    had my second biopsy yesterday on one of the other nodes they are concerned about, get the results next week and then treatment decision after that with a bit of luck.
    Last edited by VMarie; 06-20-2017 at 07:09 PM.
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  7. #27
    Experienced User
    Join Date
    Oct 2013
    Posts
    73
    well results are in from the second needle biopsy and that confirms the hodgkins as well.

    they have decide to go for escalated beacopp with rituximab this apparently is more toxic than the ABVD but allows then to use the rituximaab to simultaneously treat the non-hodgkins at the same time.

    treatment starts on monday!
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  8. #28
    Experienced User
    Join Date
    Oct 2013
    Posts
    73
    had my first rituximad today, had a fairly horrible reaction to begin with but after they sorted that was pretty plain sailing.
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  9. #29
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    May you continue to heal with no/low reactions!
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  10. #30
    Experienced User
    Join Date
    Oct 2013
    Posts
    73
    so a week in and for the most part it hasn't been to bad, feeling very weak and constantly nauseated. Nothing tastes right and I have lost 7 pounds.

    however the constant pain I was in has gone and there is significant reduction in my two most obvious tumors, like seriously significant reduction that I find difficult to believe.

    Simon
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

 

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