Round III

24

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited October 2020 #22
    Appreciate all

    I had the surgical removal of the huge node yesterday, proceedure reportedly went fine, although the surgeon could not feel it beforehand, and had to use an ultrasound in the OR to guide the incision.   It hurt very bad first day, is a bit milder today.  He told my wife in the waiting room while I was in recovery that "There is no way this is not cancer."  I do not know what that was based upon, but have no doubt that he is correct.     I continue to believe that this is no longer NLPHL.  It has almost definitely morphed into something more aggressive.   Surgeon said pathology reports come faster than they used to, and I should hear something by Mon or Tuesday.

    My former M.O. has retired, but I am now going to be treated by a fantastic woman who is a specialist specifically in hematological cancers, and who does research.  She is also one of the few doctors in the group who can lead S.C.T.s    

    I feel no anxiety at all.   Some worry, definitely.    I most likely won't log back in here until Monday or so.  Bless everyone for their kind thoughts, here and via P.M.

  • Lym999
    Lym999 Member Posts: 43 Member
    edited October 2020 #23
    Hoping For The Best

    Wow, That was a surprise! I am hoping for the best for you. My biggest fear isn't about getting Lymphoma again, but another kind of cancer down the road. Was the node removed from the lung area?

  • PBL
    PBL Member Posts: 366 Member
    edited October 2020 #24
    Transformation

    Glad that is done and you won't have to wait for too long for a definitive diagnosis and treatment plan.

    Here is a link [https://ashpublications.org/blood/article/127/16/1946/34834/New-insights-into-NLPHL-transformation]  to a little semi-recent article on your current preoccupation from the ASH website - I hope you find some reassurance in reading it (if you haven't already) - and hope it is indeed more of the same, which may be the least unfavorable possibility.

    PBL

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Lym999 said:

    Hoping For The Best

    Wow, That was a surprise! I am hoping for the best for you. My biggest fear isn't about getting Lymphoma again, but another kind of cancer down the road. Was the node removed from the lung area?

    M.C.

    Headed down the Yellow Brick Road to the oncologist in about an hour.   Of course, 'nothing'  available at My Chart-- no results.  I do hope the doc will have them.

    An interesting little dvelopment:  my hospital system began transformation into a new medical group about a year ago.   Pretty soon, it will seemingly own most hopspitals in SC west of the coast, where some other powerhouses are ensconced in such a way as to never lose their monopoly in that region.   They are changing their MYCHART posting practices:  Beginning in November, as soon as a result or lab is completed, it goes straight to My Chart, with no doctor release required.   I rejoyce at this.   Doctors have monopolized and sat on this information for too long.  Of course I have no idea whether this policy will effect MyChart in other areas.

    LYM,   my biopsy node was just below the surface, front axillary (armpit), not near the lung.   The symmetry with my 2009 left incision would be perfect, except that this new one is 4.25 inches long.  It hurt terribly for sevelar days, and I still have a little trouble lowering the arm down.  The surgeon felt for the node just before rolling me back to the O.R., but still could not feel it at all; repeated that he would have to guide his incision via ultrasound.

    I am thinking some form of leukemia, but I do hope for the best.  I just pray for a treatable/managable disease that is not rapidly fatal.  PBL, I have been sleeping all day, every day, and have not seen your link yet, but thank you dearly, I will get to it.

  • po18guy
    po18guy Member Posts: 1,461 Member
    edited October 2020 #26
    Leukemia...

    would not normally manifest itself outside of the marrow and bloodstream. AFAIK, that would have lead to obvious symptoms, such as anemia, bleeding or infections. But, pathology has the last word here.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    po18guy said:

    Leukemia...

    would not normally manifest itself outside of the marrow and bloodstream. AFAIK, that would have lead to obvious symptoms, such as anemia, bleeding or infections. But, pathology has the last word here.

    Nothing Burger

    Today's trip to my new onc was a total waste.   In fact, her nurse came out and told my wife and I to go home before I met her, because they still did not have my results.....  I was wondering: They didn't know this yesterday ?

    The onc's office called later in the day, saying that she had called the pathology lab herself, and they told her that they could not determine what disease it is, and were forwarding it to a more sophisticated facility.   Proceeding at the speed of modern medicine.....   I have a sister-in law who, about 12 years ago, developed lumps all inside both lungs.   At first, the docs thought lung cancer, then lymphoma.  A team of pathologists, a pulmonologist, and medical oncologist took OVER A YEAR to determine that she had (has) sarcoidosis.  I am not making this up.    Best advice I can give is, be sure yor cancer is slow-moving.

  • po18guy
    po18guy Member Posts: 1,461 Member
    edited October 2020 #28

    Nothing Burger

    Today's trip to my new onc was a total waste.   In fact, her nurse came out and told my wife and I to go home before I met her, because they still did not have my results.....  I was wondering: They didn't know this yesterday ?

    The onc's office called later in the day, saying that she had called the pathology lab herself, and they told her that they could not determine what disease it is, and were forwarding it to a more sophisticated facility.   Proceeding at the speed of modern medicine.....   I have a sister-in law who, about 12 years ago, developed lumps all inside both lungs.   At first, the docs thought lung cancer, then lymphoma.  A team of pathologists, a pulmonologist, and medical oncologist took OVER A YEAR to determine that she had (has) sarcoidosis.  I am not making this up.    Best advice I can give is, be sure yor cancer is slow-moving.

    Speaking of which

    Hope that SIL is OK now! Sarcoidosis is not an affirmative diagnosis. Rather, it is a blanket term that describes various considitions that do not fit any other diagnosis. Thought I might have had this in 2015 and doctor replied "We can't rule it out" but you know what it ended up being. Fortunately, many cases of sarcoidosis resolve - but it can be rather nasty as well.

    It is a good sign that your local path lab is sending your tissue out. Since they must know what they were looking for from your prior diagnosis, you would almost certainly know by now if it was a relapse. It just might be one of the many type of HTI lymphoma - Hard To Identify. Although....there are a number of benign lymphoproliferative conditions. Good news: being non-cancerous, they relieve one's headache. Bad news: They just cause a different headache. Such is a pilgrim's journey.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited October 2020 #29
    po18guy said:

    Speaking of which

    Hope that SIL is OK now! Sarcoidosis is not an affirmative diagnosis. Rather, it is a blanket term that describes various considitions that do not fit any other diagnosis. Thought I might have had this in 2015 and doctor replied "We can't rule it out" but you know what it ended up being. Fortunately, many cases of sarcoidosis resolve - but it can be rather nasty as well.

    It is a good sign that your local path lab is sending your tissue out. Since they must know what they were looking for from your prior diagnosis, you would almost certainly know by now if it was a relapse. It just might be one of the many type of HTI lymphoma - Hard To Identify. Although....there are a number of benign lymphoproliferative conditions. Good news: being non-cancerous, they relieve one's headache. Bad news: They just cause a different headache. Such is a pilgrim's journey.

    Surgeon

    My surgeon, as he revieved my timeline and the CT, mentioned something to me about CLL, but I don't know why that in particular came to his mind.

    Otherwise, still a nothing burger, with extra nothing on the side.

  • ShadyGuy
    ShadyGuy Member Posts: 896 Member
    edited October 2020 #30

    Surgeon

    My surgeon, as he revieved my timeline and the CT, mentioned something to me about CLL, but I don't know why that in particular came to his mind.

    Otherwise, still a nothing burger, with extra nothing on the side.

    my biopsy ...

    (a horrible experience - nearly killed me - went in for day surgery and ended up staying 8 days)  was looked at locally then sent to a lab in Massachussets and also to a second lab in California. The second lab  then requested a BMB be sent to them. It took 3 weeks to get definitive results. Hope yours go better and faster. Curious coincidence because the radiologist who read my initial CT also said it looked like CLL.

     

    There's just gotta be a place up ahead where men ain't low-down and poker's played fair. If there weren't, what are all the songs about?

    Buster Scruggs

  • PeprmntPat55
    PeprmntPat55 Member Posts: 70 Member
    edited October 2020 #31
    So sorry to hear this!

    I hate to hear this, Max. I will be praying for you 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited October 2020 #32

    So sorry to hear this!

    I hate to hear this, Max. I will be praying for you 

    Wonderful

    Great to see your lovely face, Peppermint.  Thank you.

    I messaged the following to my surgeon and oncologist today, after more 'crickets' on My Chart:

    "If I move, or if the postal service changes my zip code,  before my results are back, I will forward the new address information to your office."

    Probably running through the airport for a flight to St Lucia, about now.

  • Sandy Ray
    Sandy Ray Member Posts: 143 Member
    edited October 2020 #33
    Waiting

    I am still praying for you. The waiting for answers is so frustrating. On my first diagnosis in 2017 they sent my biopsy to 3 places. Finally Elaine Jaffe with National Institute of Health gave a diagnosis.

    When it relapsed in 2019 it took the. 24 hours at MD Anderson. Guess they knew what they were looking for.  I hope you get answers soon and it is the best possible scenario. Having you on this forum is a very calming effect for many of us.

    Sandy

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited October 2020 #34
    Bless you

    I very much appreciate your kind words Sandy.

    I looked up the Pathology group that services our hospital system.   They state that most results are back to the submitting physician 'within 24 to 48 hours.'    They also state on their website that they are as certified and have as good equipment as Duke and Emory medical schools.   I guess they know what they are doing....   Meanwhile, it is now NINE days

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited October 2020 #35

    Bless you

    I very much appreciate your kind words Sandy.

    I looked up the Pathology group that services our hospital system.   They state that most results are back to the submitting physician 'within 24 to 48 hours.'    They also state on their website that they are as certified and have as good equipment as Duke and Emory medical schools.   I guess they know what they are doing....   Meanwhile, it is now NINE days

    Judgement

    I went to my surgeon yesterday for routine post-surgical check of the biopsy incision.   He had just that day received some results via e-mail.

    The sample was studied in two premiere labs, and signed off on by four pathologists specializing in blood malignancies.   The result is "PTGC, with follicular hyperplasia."  PTGC (which I had never heard of before) commonly accompanies NLPHL (what I had in 2009) and follicular NHL.    It can occur before, during, or after lymphoma, but is often BENIGN, and is not regarded clinically as a precursor to NHLPL, but it does require constant following and possibly scanning.   

    I am attaching an article on PTGC.   It should be of interest to anyone dealing with NLPHL, follicular NHL, or simply PTGC itself.

    Also, let me mention the site OncologyGo, which I get via Amazon Firestick steaming.  It is also available as an APP,  on Apple TV, and RoKu.    Short presentations by oncologists discussing their latest research.

    Needless to say, I am quite relieved, and appreciate all of the kind sentiments shared,   

    max

     

    To open the link, Highlight, then r click, then hit "Go to......"

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5910479/

  • ShadyGuy
    ShadyGuy Member Posts: 896 Member
    edited October 2020 #36

    Judgement

    I went to my surgeon yesterday for routine post-surgical check of the biopsy incision.   He had just that day received some results via e-mail.

    The sample was studied in two premiere labs, and signed off on by four pathologists specializing in blood malignancies.   The result is "PTGC, with follicular hyperplasia."  PTGC (which I had never heard of before) commonly accompanies NLPHL (what I had in 2009) and follicular NHL.    It can occur before, during, or after lymphoma, but is often BENIGN, and is not regarded clinically as a precursor to NHLPL, but it does require constant following and possibly scanning.   

    I am attaching an article on PTGC.   It should be of interest to anyone dealing with NLPHL, follicular NHL, or simply PTGC itself.

    Also, let me mention the site OncologyGo, which I get via Amazon Firestick steaming.  It is also available as an APP,  on Apple TV, and RoKu.    Short presentations by oncologists discussing their latest research.

    Needless to say, I am quite relieved, and appreciate all of the kind sentiments shared,   

    max

     

    To open the link, Highlight, then r click, then hit "Go to......"

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5910479/

    This makes ...

    ... my day! This is great news Max!

  • GGc0ok
    GGc0ok Member Posts: 54 Member
    edited October 2020 #37

    Judgement

    I went to my surgeon yesterday for routine post-surgical check of the biopsy incision.   He had just that day received some results via e-mail.

    The sample was studied in two premiere labs, and signed off on by four pathologists specializing in blood malignancies.   The result is "PTGC, with follicular hyperplasia."  PTGC (which I had never heard of before) commonly accompanies NLPHL (what I had in 2009) and follicular NHL.    It can occur before, during, or after lymphoma, but is often BENIGN, and is not regarded clinically as a precursor to NHLPL, but it does require constant following and possibly scanning.   

    I am attaching an article on PTGC.   It should be of interest to anyone dealing with NLPHL, follicular NHL, or simply PTGC itself.

    Also, let me mention the site OncologyGo, which I get via Amazon Firestick steaming.  It is also available as an APP,  on Apple TV, and RoKu.    Short presentations by oncologists discussing their latest research.

    Needless to say, I am quite relieved, and appreciate all of the kind sentiments shared,   

    max

     

    To open the link, Highlight, then r click, then hit "Go to......"

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5910479/

    Great news indeed

    Hi Max

    That's The best news Max. I'm sure your relieved. It's been a long wait for you.  
    Your positive attitude and your knowledge has helped many of us.  I'm relatively new here but your words and kindness mean so much to me and many of us.  
    Be well my friend 

    thank you 

    GG

  • Nellie4579
    Nellie4579 Member Posts: 20
    edited October 2020 #38
    So good to hear!

    I know the long wait for results was hard but I'm so happy for the good outcome Max!

  • PBL
    PBL Member Posts: 366 Member
    edited October 2020 #39
    Phew!

    So glad it turns out to be benign, Max!

    The article mentions close monitoring and perhaps Rituximab - I assume you've got a hematologist's appointment to discuss that soon...

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited October 2020 #40
    PBL said:

    Phew!

    So glad it turns out to be benign, Max!

    The article mentions close monitoring and perhaps Rituximab - I assume you've got a hematologist's appointment to discuss that soon...

    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.

  • Sandy Ray
    Sandy Ray Member Posts: 143 Member
    edited October 2020 #41
    Glad for news

    Max,

    Glad you have some answers. I get my 6 month scan since stem cell next week. They are also going to give me the rest of the stem cells they harvested in March. Hopefully to get my bone marrow working again.

    So first I would like a clear scan and then if the stem cell booster would work that would be great. I was so glad to hear you were not headed down the chemo or stem cell transplant path. Hope you have a happy thanksgiving and a merry Christmas!