Round III

13

Comments

  • illead
    illead Member Posts: 884 Member
    edited November 2020 #42
    Very good news

    What a relief for you and your family and for us.  If Jim was still posting he would have us all doing the happy dance!

    Good for you,

    Becky

  • po18guy
    po18guy Member Posts: 1,465 Member
    edited November 2020 #43
    Max Former Hodgkins Stage 3 said:

    Yes

    Correct:  I expect to meet my new oncologist within a week or so.     PTGC and NLPHL are close play mates, so I will insist on them watching this closely.

    Well...

    It "might" be helpful to view this as similar to an Epstein-Barr Virus infection. EBV is associated with some cancers, tags along or piggybacks, but may or may not be an actual cause. I had EBV-caused mononucleosis in about 1973. My first lymphoma in 2008 had no EBV involvement, but the second one in 2014 did. No rhyme or reason is known for that. From the Wiki:

    "Most people become infected with EBV and gain adaptive immunity. In the United States, about half of all five-year-old children and about 90% of adults have evidence of previous infection."

    Since that in no way correlates to the cancer rates, it remains very mysterious - as do all idiopathic conditions.  

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited November 2020 #44
    illead said:

    Very good news

    What a relief for you and your family and for us.  If Jim was still posting he would have us all doing the happy dance!

    Good for you,

    Becky

    Happy !

    Thanks Becky, thank you Sandy.  Blessings to all.

     

    michael jackson dancing GIF

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited November 2020 #45
    Max Former Hodgkins Stage 3 said:

    Happy !

    Thanks Becky, thank you Sandy.  Blessings to all.

     

    michael jackson dancing GIF

    Germinal Centers

    This link is a bit technical, but might interest anyone who has had NLPHL, Follicular, or T-cell disease.

     

    https://en.wikipedia.org/wiki/Germinal_center

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited November 2020 #46
    New Doc

    Met my new doc recently, and numerous blood tests were ordered.   WHile I have not spoken w/ the doc yet, most CBC stuff was perfect, except for astronomically high TIBC, high  transferrin, and low transferrin saturation.    Most of this is associated with anemia, which I have had before (after chemo ended).   Celiac Disease is a common cause, but I was tested for that years ago when severely anemic.   Had colonoscopy also, normal.     Other common causes are Aplastic Anemia and hemochromatosis.   I know many more tests are headed my way.

  • po18guy
    po18guy Member Posts: 1,465 Member
    edited November 2020 #47
    Time for a new battery of tests?

    Unless it is invasive or cost prohibitive (even if it is) might be a good time to be tested for celiac once again. Untreated celiac is associated with  a very nasty T-Cell Lymphoma: Enteropathy Associated T Cell Lymphoma. Kind of the Corona virus of lymphomas - next to Burkitt's. This could also be a long-term effect of the ABVD - who knows? While the hood's up, might as whell check angine and transmission...

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited November 2020 #48
    po18guy said:

    Time for a new battery of tests?

    Unless it is invasive or cost prohibitive (even if it is) might be a good time to be tested for celiac once again. Untreated celiac is associated with  a very nasty T-Cell Lymphoma: Enteropathy Associated T Cell Lymphoma. Kind of the Corona virus of lymphomas - next to Burkitt's. This could also be a long-term effect of the ABVD - who knows? While the hood's up, might as whell check angine and transmission...

    ANA

    Got results via MyChart today of antinuclear antibody series  ("ANA").     I actually had never heard of this one before.    It was negative.    Reportedly, it checks for indicators that a person may have one of around 150 Autoimmune disorders....

    New doctor is being VERY thorough.

  • ShadyGuy
    ShadyGuy Member Posts: 902 Member
    edited November 2020 #49
    Max Former Hodgkins Stage 3 said:

    ANA

    Got results via MyChart today of antinuclear antibody series  ("ANA").     I actually had never heard of this one before.    It was negative.    Reportedly, it checks for indicators that a person may have one of around 150 Autoimmune disorders....

    New doctor is being VERY thorough.

    ANA test

    Despite its imposing name, it is actually a simple test, not expensive. Some consider it an unreliable test with lots of false negatives and false positives.I had it with a hit. Had it done a second time it was negative. Go figger.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited November 2020 #50
    ShadyGuy said:

    ANA test

    Despite its imposing name, it is actually a simple test, not expensive. Some consider it an unreliable test with lots of false negatives and false positives.I had it with a hit. Had it done a second time it was negative. Go figger.

    tests

    Thanks, SG.  Yes, I had read that the results for ANA swing around a lot in any given individual.  Apparantly about as reliable as COVID.   I todate have known personally two people who tested positive for COVID, then negative, then positive again -- both never had any symptoms.   I still have never met, or known of anyone in my circle of acquaintances, neighbors, coworkers, Church members, or relatives, who have even had one day's worth of COVID symptoms.  Not one.   I routinely ask people I encounter, even strangers like cashiers, etc, if they have known anyone with COVID symptoms.  Never had ONE respond 'yes.'   I easily have at leat 50 first cousins, when both sides of the family are counted.  Never has one mentioned a family  member with COVID symptoms.

  • ShadyGuy
    ShadyGuy Member Posts: 902 Member
    edited November 2020 #51
    Max Former Hodgkins Stage 3 said:

    tests

    Thanks, SG.  Yes, I had read that the results for ANA swing around a lot in any given individual.  Apparantly about as reliable as COVID.   I todate have known personally two people who tested positive for COVID, then negative, then positive again -- both never had any symptoms.   I still have never met, or known of anyone in my circle of acquaintances, neighbors, coworkers, Church members, or relatives, who have even had one day's worth of COVID symptoms.  Not one.   I routinely ask people I encounter, even strangers like cashiers, etc, if they have known anyone with COVID symptoms.  Never had ONE respond 'yes.'   I easily have at leat 50 first cousins, when both sides of the family are counted.  Never has one mentioned a family  member with COVID symptoms.

    COVID - my lay opinion

    Believe me when I tell you lots of people have had COVID. However for most people the symptoms have ranged from non-existent to easily managed. Three of my five grandchildren tested positive but had nothing more than a sniffle. My neighbors family of six all tested positive and the only ill effect was the little girl had diarrhea for a couple of days. I know of at least three contemporaries whose elderly parents died of COVID. My best friend's brother-in-law aged 62 died of it last week after being ill for only two days. But he had severe diabetes and was overweight so one must ask was it really COVID that killed him? I advise caution but not paralysis in dealing with COVID. Take reasonable precautions but get on with life. Best policy is to avoid unnecessarily being around other people, especially indoor crowds. I know for a fact that cancer patients can survive it quite easily if they are not undergoing chemo or other harsh treatments. Those in treatment have reason to avoid exposure at all costs.

  • po18guy
    po18guy Member Posts: 1,465 Member
    #52
    PETs, SUVs and limitations

    This may be of some comfort.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3026294/

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #53
    Development

    I had my PET on Dec 18, and got the results via MyChart that same night.   My new hematologist recommended it because the CT from two months ago that initiated all of this was of the thoracic region only, and despite the biopsy coming back as PTGC only, she said that she was suspicious that I did not have active disease elsewhere.  She was right.

    Grossly enlarged nodes were found (again) in the right axillary, the mesendary (rear of the abdomen), and along the left iliac chain (basically, the pelvis).   SUV values from almost 10, to around 6 on these nodes.  Oddly, the femur itself showed some SUV elevation.  This is widely dispersed, but none-bulky.   The distribution is unlike usual NLPHL, which ordinarily is clustered together in the axillary and center thorax.   It cannot be good.   Based upon the rate at which it has enlarged, I am thinking perhaps an aggressive NHL.

    I have an appointment with her on Tuesday.

    max

  • po18guy
    po18guy Member Posts: 1,465 Member
    edited December 2020 #54
    Sending some up

    On your behalf.

     

  • ShadyGuy
    ShadyGuy Member Posts: 902 Member
    edited December 2020 #55
    Good Luck Max ..

    the upside is that aggressive = curable. Here is hoping for the best on Tuesday. Hope you are feeling ok. Go fishing or target practicing. Flirt with a younger woman. Have fun!

  • PBL
    PBL Member Posts: 366 Member
    edited December 2020 #56
    SUV

    Max,

    Sorry for your ongoing concern.

    SUV values up to 13 are generally associated with indolent disease, so there may be some other explanation to your findings.

    Here's hoping for reassuring news in a couple of days.

    PBL

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #57
    ShadyGuy said:

    Good Luck Max ..

    the upside is that aggressive = curable. Here is hoping for the best on Tuesday. Hope you are feeling ok. Go fishing or target practicing. Flirt with a younger woman. Have fun!

    Flirt

    Shady,

    I like the flirting idea...  It is never too late for humor.   When I get temperture scanned going into facilities, and they ask if I have had any change in taste, I reply, "Yeah.  I used to prefer brunettes, but am trending toward blondes."   When nurses ask if I have fallen recently, I tell them "not while sober."   When the hospital business office asks me if I will sign to agree to treatment, I tell them "No....I just made the appointment, confirmed it twice online, waited, did the proceedure prep, and got up early and drove in here for fun." 

    I then ask them, "How often do people schedule proceedures, show up to have them done, and then say they do not wish to be seen ?"

     

    .

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited December 2020 #58
    PBL said:

    SUV

    Max,

    Sorry for your ongoing concern.

    SUV values up to 13 are generally associated with indolent disease, so there may be some other explanation to your findings.

    Here's hoping for reassuring news in a couple of days.

    PBL

    Good

    PBL I appreciate that;  SUV is not a variable that I have studied.

  • PBL
    PBL Member Posts: 366 Member
    edited December 2020 #59
    PTGC may still be an option...

    ... based on this article:

    https://www.researchgate.net/publication/278043878_A_Case_Report_of_High_18F-FDG_PETCT_Uptake_in_Progressive_Transformation_of_the_Germinal_Centers

     

  • ShadyGuy
    ShadyGuy Member Posts: 902 Member
    edited December 2020 #60
    Not reliable

    Neither PET or SUV measures are anything more than screening tools. No good for diagnosis. SUV levels are not automated and different techs give different values based on same results. I feel Max will be fine. He is a winner.

  • PBL
    PBL Member Posts: 366 Member
    edited December 2020 #61
    Of course...

    ...It goes without saying - PET results are not diagnostic as such, and are notoriously dependent on the individual interpreting them.

    I am merely trying to offer non-sinister alternative hypotheses to Max's conundrum.

    And although I haven't got a crystal ball,  I certainly hope Max will be fine.

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