Pet scan with lymph node activity

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  • po18guy
    po18guy Member Posts: 1,505 Member
    edited January 2021 #22
    Lauraisabel said:

    Pet scan

    Now I'm really worried because my new pet scan shows new activity in the nasopharynx bilaterally with suv reaching 6. Thank you for your feedback!

    Do you...

    have the radiologist's report? Or, have you discussed this with doctor? From location and bi-lateral nature, sounds to me like a viral infection. Have you been swabbed for viruses?

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #23
    po18guy said:

    Do you...

    have the radiologist's report? Or, have you discussed this with doctor? From location and bi-lateral nature, sounds to me like a viral infection. Have you been swabbed for viruses?

    Pet scan

    I have the report that comes with the disk. Never been swabbed for viruses.

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    edited January 2021 #24
    Lauraisabel said:

    Pet scan

    Now I'm really worried because my new pet scan shows new activity in the nasopharynx bilaterally with suv reaching 6. Thank you for your feedback!

    Not very knowledgeable ...

    But I must say that in my keyhole view of your situation I must wonder why they are giving you PET tests. Why not watch and wait for a year? Your lesions are very small, your SUVs are very low. Maybe a biopsy just to ease your mind. Just a thought. and I have very little faith in PET as anything more than a first line screening tool. Enjoy life while you can. Worry is a killer as surely as lymphoma. Live in the moment. Best of luck. I wish you all the best.

  • Lauraisabel
    Lauraisabel Member Posts: 71
    edited January 2021 #25
    ShadyGuy said:

    Not very knowledgeable ...

    But I must say that in my keyhole view of your situation I must wonder why they are giving you PET tests. Why not watch and wait for a year? Your lesions are very small, your SUVs are very low. Maybe a biopsy just to ease your mind. Just a thought. and I have very little faith in PET as anything more than a first line screening tool. Enjoy life while you can. Worry is a killer as surely as lymphoma. Live in the moment. Best of luck. I wish you all the best.

    Pet scan

    Thank you. I see dr Thursday so I will see what she says.

  • Lauraisabel
    Lauraisabel Member Posts: 71
    edited February 2021 #26
    Biopsy

     

    Hi there. I am nervous this is why i have you all! So I had a nasal biopsy a week ago. It came back positive for B cell lymphoma. So it seems that it's acting up again. I wonder what you all had to do after. I see the oncologist on Thursday and I don't know if we are going to do rituxin by itself or with something else. I just am worried about chemo. Any feedback is great. Thank you!!! Actually it said findings are suspicious for B cell lymphoma and I was dx with marginal zone b lymphoma a while ago.

  • PBL
    PBL Member Posts: 366 Member
    edited February 2021 #27
    Prior treatment?

    Hi,

    Sorry to read your news... You say you were diagnosed with MZL "a while ago" - when was that, and were you ever treated for it? If I try to read in between the lines here, I would assume that you were treated with single-agent Rituximab so far.

    If the new biopsy report only says "findings suspicious for B-cell lymphoma", it is possible that your oncologist will request another biopsy for more precise results before making any further moves.

    As regards treatment this time, with the tumor being in your nasopharynx (did they biopsy your adenoids?), your oncologist may well opt for chemotherapy followed by some radiotherapy and possibly prophylactic  intrathecal methotrexate as well.

    Do let us know how things go next Thursday.

    PBL

  • Lauraisabel
    Lauraisabel Member Posts: 71
    #28
    New drug

    Hi there..they want to give me duvelisib instead of chemo and rituxin. Have any ou you had this pill? Thank you.

  • DJS628
    DJS628 Member Posts: 77
    edited March 2021 #29
    I'm Sorry it Turned Out to be Lymphoma

    Hi Laura,

    I am so sorry you found out it indeed is lymphoma.  How are you doing now & how is the treatment going? We are always told not to worry until we're sure there is something to worry about!  But it's so hard not to worry! But worrying really doesn't help us, does it?  I am always worried 2-3 weeks before a follow-up appointment or pet scan (doesn't help that I've had a relapse before). 

    Remember to BREATHE & try to relax!  Take care and get your rest.  We're here for you.  Please keep us up-dated on how you're doing.

    ---Debbie

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #30
    Lauraisabel said:

    New drug

    Hi there..they want to give me duvelisib instead of chemo and rituxin. Have any ou you had this pill? Thank you.

    Don’t be ....

    too concerned about the stuff on the web about interactions and side effects. If it bothers you read what they say about aspirin. All drugs sound awful but in reality usually are not. I am taking a drug called Lyrica to help with nerve pain and neuropathy (caused by chemo). I read the reviews on the internet and thought I would surely die from just being in the same room with it much less taking it. However I am just fine and it really helps. I feel much better. No cancer treatment is a walk in the park but just listen to your doctor. Best of luck.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #31
    ShadyGuy said:

    Don’t be ....

    too concerned about the stuff on the web about interactions and side effects. If it bothers you read what they say about aspirin. All drugs sound awful but in reality usually are not. I am taking a drug called Lyrica to help with nerve pain and neuropathy (caused by chemo). I read the reviews on the internet and thought I would surely die from just being in the same room with it much less taking it. However I am just fine and it really helps. I feel much better. No cancer treatment is a walk in the park but just listen to your doctor. Best of luck.

    Excellent

    Excellent observation: warnings on NASIDS, if read all the way through, would scare most people.    Warnings are lawyer- and insurance-provider driven.  They usually have little corrospondence to real-world experience.   And chemos can never be precision predicted for side-effects.   A somewhat common side-effect that disables one person, will not even be detectable in the next ten patients.

    Society, in some areas, regards EVERYTHING as dangerous.   For years, guitars and bass guitars have been labeled as 'carcinogens.'   Regardless of wood type, finish material, regardless of whether electric or acoustic.   Go to any online major instrument retailer and you will see this for yourself, usually in the shipping data.  It is hard to figure WHAT about guitars is 'dangerous.'   My brother ordered a hunting knife from Amazon a few years ago.   Just a knife, just steel.   It had a warning stating that it was believed to be a carcinogen in the State of California.   Granite is a natural, extremely weak natural emitter of radiation, but the SUN can kill you 10,000 times faster.   There is no such thing as 'absolutely safe' regarding ANYTHING  (oxygen, for instance, can be posionous, and people can overdose on tap water, when it skews electrolytes)  This is part of why covid paranoia will not go away in our current world: people want ABSOLUTELY no risk, but there is no such thing, anywhere.

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    edited March 2021 #32
    Max Former Hodgkins Stage 3 said:

    Excellent

    Excellent observation: warnings on NASIDS, if read all the way through, would scare most people.    Warnings are lawyer- and insurance-provider driven.  They usually have little corrospondence to real-world experience.   And chemos can never be precision predicted for side-effects.   A somewhat common side-effect that disables one person, will not even be detectable in the next ten patients.

    Society, in some areas, regards EVERYTHING as dangerous.   For years, guitars and bass guitars have been labeled as 'carcinogens.'   Regardless of wood type, finish material, regardless of whether electric or acoustic.   Go to any online major instrument retailer and you will see this for yourself, usually in the shipping data.  It is hard to figure WHAT about guitars is 'dangerous.'   My brother ordered a hunting knife from Amazon a few years ago.   Just a knife, just steel.   It had a warning stating that it was believed to be a carcinogen in the State of California.   Granite is a natural, extremely weak natural emitter of radiation, but the SUN can kill you 10,000 times faster.   There is no such thing as 'absolutely safe' regarding ANYTHING  (oxygen, for instance, can be posionous, and people can overdose on tap water, when it skews electrolytes)  This is part of why covid paranoia will not go away in our current world: people want ABSOLUTELY no risk, but there is no such thing, anywhere.

    Some of the things I have seen ..

    with cancer warnings

     - copper bullets 

     - cell phones 

     - motor oil

     - sunglasses

     - plastic tarps

     - screwdrivers

     - shoes

     - glue

     - light bulbs

     - seat covers

     - etc. etc. etc. - the list goes on and on.

    I think the moral of the story is be paranoid about life. Be scared of people and things. And above all  never be comfortable, relaxed or worry free NOT. 

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