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Thread: Follicular Lymphoma for a while now

  1. #2491
    Experienced User
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    Apr 2019
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    Sorry to hear that access is complex. This seems similar to attempts to get at my lung nodule. A needle biopsy failed due to location and danger of a collapsed lung. There was concern as well that a needle would not extract enough tissue to accurately identify what was going on. It would seem that the risk of someone poking around in the abdomen is much greater than a collapsed lung. My mother passed away from an internal infection caused by a rupture from an abdominal scope procedure to fix a hernia. My lung surgery involved robotics which left three smaller incisions which probably totaled around 8". It took one month to heal enough to go to transplant. I will continue to hold you in the light that your team of doctors will find a good path forward. Very best on this.

  2. #2492
    I honestly can not imagine how much stress your under right now trying to deal with this current issue. I believe your treatment history could easily be a case study for fnhl. Prayers from Tennessee.

  3. #2493
    Super Moderator Top User Baz10's Avatar
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    K,
    Being in the same situation where we both face a stonewall position from the surgeons, both of us a high risk vascular issue although for different conditions I hope I understand.
    damned if they do and damned if they don’t springs to mind.
    a heck of a position.
    let us hope they find a route to get the biopsy done.
    Good wishes from across the pond.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  4. #2494
    Super Moderator Top User po18guy's Avatar
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    It is not an enviable position to be in, and I hope this does not come to pass in your case - but I had to wait and grow more tumors so that one would appear closer to the surface. Of course, several did and we went on from there.

  5. #2495
    Experienced User
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    Nov 2017
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    81
    Damn not what i expected to read. Dont know what are the next steps, but im sure someone will know.
    Was it just a routine PET or were you suspecting something ? you said growing lumps but i guess those would have to be close so you could fell them and therefor could be extracted.

    Anyway...keep it hope!!!
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    Dev/18: PET-CT Done. All good
    Apr/19: Follow up. All good.
    Oct/19: Follow up. All good.
    ... on to follopw ups...

  6. #2496
    Moderator Top User
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    Mar 2010
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    Here is a report from ASH on liquid biopsy which may tell if its transformed as it detects dlbc worth a read and a chat with the doctors

    https://ash.confex.com/ash/2019/webp...per131081.html
    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.

  7. #2497
    Administrator Top User Kermica's Avatar
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    I will share this, John, thanks.

    My next step is to meet with an interventional radiologist to find out if he thinks he can get a needle to the node without hitting anything else, lol. We'll see what he has to say.

    Bank Walker, I am not heavily stressed by these events. More on the highly annoyed side of things, to be honest. Its kind of funny - here is the transformed, failed auto transplant patient whose scan says "danger, danger" and he can't find a doc willing to go after the node or another node that would be clinically viable and accessible.

    Oh well...good health to all,

    kermica

  8. #2498
    Administrator Top User Kermica's Avatar
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    Hi everyone. Sorry for the ong delay in posting. I finally had a CT guided needle biopsy last Thursday. The procedure was seemless. I saw my onc this past Tuesday and the preliminary diagnosis is follicular lymphoma...not transformed FL and not DLBCL. In some cases, the transplant is succesful in killing the Large B cell disease but the original FL will remain. That appears to be what happened here. Of course, we only checked one node but it leaves me cautiously optimistic at this point.

    Next step is to do W+W for two months and then to get a CT for a tumor size comparison study to look at rates of growth. In the meantime, I will return to Dana Farber to continue my post transplant health checks and to initiate the reintroduction of vaccines which is scheduled to begin in January.

    So, all in all, it appears that the transplant has worked, at least for now. Still lots of risks and questions but my situation is better than I thoguht a week ago, or at least that is how things appear.

    Good health to all,

    Richard

  9. #2499
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    10,499
    Finally, a bit of relief! Very good to hear from you - as we know life gets busy, and especially at this time of year. Almost surreal that, after all these years and after all of the procedures and drama, you are back on watch and wait! Ah, but that's life.

  10. #2500
    Moderator Top User
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    Mar 2010
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    Good to see your update and good to read its better than it could have been, focusing on that is the best way to progress and if and when it changes as always you will deal with it the, no point in doing anything else.

    Have a good family Christmas and enjoy

    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.

 

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