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Thread: Follicular Lymphoma for a while now

  1. #2341
    Administrator Top User Kermica's Avatar
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    A very busy day today. The BMB went fine, lots of lidocaine does the trick. The aspiration was uncomfortable, of course, but the rest was fine. As for the funeral director he is a friend. I have no intention of shuffling off any time soon but it is a relief to know that, when the inevitable occurs and no matter who is first, the details have been addressed and the kids won't have to deal with it. Then to the lawyer for a needed will revision. Then to lunch and home for a nap.

    Thirty minutes later my wife wakes me up to tell me that a big tree has fallen in the backyard (we are having a massive wind storm here in the Northeast). Unfortunately, the tree also ripped the electric and cable feeds from the house, damaged my fence and the siding. Strangely, the power and bable both still work, The live line is lying in the yard. The power company is on their way and Isuspect we will be told that we cannot stay here until repairs are made.

    The fun never ends...PET/CT in the morning, I was told to tell the techs that the hot spot on my hip is the BMB...I would have thought of that one myself, I think!

    Good health,

    kermica

  2. #2342
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    Hi seeing your discussion with Po just throwing this into the mix for a future combination treatment if you don't go down the sct route, if you have not seen it previously

    https://www.thelancet.com/journals/l...216-3/fulltext
    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.

  3. #2343
    Administrator Top User Kermica's Avatar
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    Thanks, John. I am getting a page error when I try to access the link, not sure why.

    I met with my oncologist today and he had results from both the BMB and the PET scan. I was impressed since they were both done within the past 72 hours. The bone marrow is clean with no sign of any lymphoma, which is great news, of course. Unfortunately, the PET scan shows four hot spots. Each was previously imaged with significantly higher number previously but all three show only a reduction in size of about 50% and a reduction of SUV which still leaves them classed as Deauville scale level 4. Level 4 is "Uptake moderately increased compared to the liver at any site".

    What is not known is whether the hot spots are indolent or aggressive. My doc mentioned a biopsy a couple of times to determine that but that Dana Farber would chime in after I see them. I told him I was nearly certain that I would not be going forward with the transplant. He emphasized that this means a recurrence will happen and that treatment choices will be limited at that point. I told him I understood that but also was looking to all the things coming down the pike for DLBCL and the growing trend to include transformed FL in their approvals. I think he gets my position even if he doesn't fully agree with it so we are still good with each other. Of course, I also confirmed that it was unlikely that Dana Farber would be willing to move forward in any event with the PET report in hand. I will see him in four weeks to see where things are at that point.

    Good health,

    kermica

  4. #2344
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    hi apologies for that its doing the same for me these are the drugs :
    In patients with advanced B-cell malignancies, combination ublituximab, umbralisib, and ibrutinib demonstrated a favorable safety profile as well as meaningful response and PFS.

    the article was in Feb 2019 lancet haematology try this link and its at the bottom of page 1
    https://www.thelancet.com/journals/l...026(19)X0002-2

    Good to see the marrow is clear though disappointing re the hot spots, the Deauville score at 4 is disappointing but could be scar tissue at at the edge where it could go either way though that may be me offering wishful thinking. The link is to a trial that you may have have come across and is showing some potential but they recognise more research is required.
    Time to think, research a bit more and see what they come back with whilst dealing with day to day life and making sure its fun, a place you know well.

    sending good vibes and hope that you get answers that help you with the next stage of your journey.

    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.

  5. #2345
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    Hi Kermica,

    Great news about the negative bone marrow - sorry to hear about the Deauville 4 PET though… Like John, my first thought upon reading that was, could it be scar tissue?

    Now, if I remember correctly, you have had 6 R-CHOP... Has your oncologist said anything about pushing to 8 cycles and re-doing a PET after that to see if there is any residual activity?

    I am a bit puzzled about the recent reversal regarding the SCT... As this would be an auto, not allo SCT, there is not much to fear except the harsh prep chemo - or is there? Are you by any chance considering Car-T (I remember seeing in the past week or so that it got approved in Canada for transformed fL)?

  6. #2346
    Administrator Top User Kermica's Avatar
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    Hi folks and thanks. I have been thinking about the PET report and references the left external iliac node as throwing the Deauville 4. That node was removed about a year ago. I'm wondering if they are seeing the hot spot which is the left posterior iliac crest where the bone marrow was removed (though it also applies to the right cervical node which is also throwing a bit of a high number). We discussed going to 8 cycles of R-CHOP and he doesn't want to do that due to my cardiac profile.

    As to the reversal on the transplant, it is based mostly on my desire to move away from medicine for a while, to take a break if you will. I have been in treatment, pre op or post op for ar least the last two years and I am very tired of it at this point. We want to go do some traveling, for example. We don't want to take the considerable load which a SCT requires at this point in our lives.

    I remain interested in CAR-T which imposes its own load and in anything else from the researchers that may help extend my life. SCT is just not the way I (or we) want to do that. Part of it is that I have multiple comorbidities, part of it is my age and part of it is just being tired of being tied to a difficult regimen for the next several months at a minimum. I do have similar concerns regarding CAR-T. As the saying goes, my life - my choice.

    Good health,

    kermica

  7. #2347
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    Kermica, I applaud you for deciding what, for you, right now will be life affirming. It seems like you have sights you want to see while still on this earth, things you want to do (instead of dealing with downed power lines and a fallen tree and more medical upheaval in your life) Enjoy your days ahead with no regrets. I'm hoping you "have the time of your life!"

  8. #2348
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    Brother, I empathize with you and with your decision to take a break. Enjoy life while you can!

    I'm in the process of a similar decision, albeit with less significant consequences - I have some spinal/nerve issues (unrelated to lymphoma) that are probably best solved by back surgery. So, do I want to do the surgery and get rid of numbness in hand/arm, etc. - but be recovering for multiple weeks and blow off all the camping trips we've planned? Or just wait until fall for surgery and recover during the "off" season. Right now, unless there's a risk of permanent damage, I'm inclined to wait.

    Unless a delay puts you at risk for not being able to treat in the future, why not take a break?

    Regarding the PET results, I could very well see where the local trauma of the BMB could show up as a hot spot. The PET doesn't care what the cause is, just the increased activity. Hopefully the other spots are linked to something other than residual disease - potentially the repair of necrotic tissue from recent tumor death. IF the right cervical node is actually lymphoma, I wonder if a short blast of localized external radiation might shut it off for good. Although as we all know, rads are not generally all that beneficial in the long run for systemic disease.

    Best of luck for whichever path you take on this. And as you've noted before, you might come back from a nice break with entire new opportunities in the form of clinical trials or recently-improved protocols.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  9. #2349
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    Hi Kermica, thanks for the update and totally understand your position. Nowadays there are more and more options for DLBCL treatment and Iím sure a place like Dana Farber will have lots of them so I hope they can give you more advice on the various potential options. CAR-T sounds like a good one. As you said, your life - your choice. Iíll have my fingers crossed for you!

    Pontagf

  10. #2350
    Super Moderator Top User Baz10's Avatar
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    K,
    ”Tired of being tied” is all too familiar to many of us, myself having reached this state of mind last year.
    Taking a break from medicine at this time to me sounds sensibly pragmatic and hopefully allows both bodily and mental catch up something I too am attempting. Like yourself We shall see.
    Wishing you good travels, peaceful thoughts returning with a positive move on attitude.
    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.

 

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