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Thread: NHL stage 4 and and the love of my life

  1. #241
    Senior User
    Join Date
    Oct 2013
    Posts
    231
    Hello,
    So scan came back. I would never think that one of my favorite words would be "unremarkable" yep, that is what he is. So we are doing good and hanging strong. We are " unremarkable"
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  2. #242
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,392
    So, anxiety is once again useful for exactly what??? Anyway, what a great Christmas present!

  3. #243
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,585
    We are " unremarkable"
    Unremarkable is a state of being that we all aspire to, zorro. It is a remarkably good thing that your hubby has done so, may he be "unremarkable"for all the rest of his days, lol.

    Good health,

    kermica

  4. #244
    Senior User
    Join Date
    Oct 2013
    Posts
    231
    Just a hello to everyone. Life is moving along. We are on watch and wait and every 3 months we see the onc. Good news is he feels good and I am able to give him a honey do list. Ok, he does not like the list, but it is spring and beutiful outside.
    I feel hope is a real thing and good things do happen. This is for anyone old to the site or new. One day at a time. So many warriors and brave and loving people on this site.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  5. #245
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,327
    Good to see another positive update lets hope he remains clear now for the years to come, its 10 years since I had my diagnosis and when I do screening for travel insurance the words cured appear, so with his lymphoma he may well be classed as cured to.
    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.

  6. #246
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,392
    Another great update. If he is well enough to gripe about your honey-do list, he's doing pretty darned well!

  7. #247
    Experienced User
    Join Date
    Nov 2017
    Posts
    75
    yay ...good one!! Take care zorro.
    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...

  8. #248
    Senior User
    Join Date
    Oct 2013
    Posts
    231
    Hello everyone, I posted earlier and was on someone's else's post thinking I was on mine. Ooopps. I did add it was mistake and am sorry. Oh well, it happens so to speak
    Just wanted to update our progress. We have been going to the onc monthly due to some nodes that pop up and then the next month gone. Blood work a little off, but not a huge red flag. I try and think of it as a chronic illness that we can live with. I usually do well with this thought, but it would be a lie to say the voices don't creep in sometimes and I want to crawl in a hole. I do have one question that I am a little confused about. Does anyone know what "monoclonal immunoglobulin" is? He did a test of KAPPA/LAMBDA light chains????? It looks like he has a very faint line and we will keep an eye on it.
    My other half just does not think about it and believes he is good. I never argue with that and keep my anxiety in check.
    So I am off to check some new posts and see if I can give any incouraging advise. I have checked on some off my long time friends out there and am always amazed at grace under fire.
    Keep on keeping on
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  9. #249
    Senior User
    Join Date
    Oct 2013
    Posts
    231
    One more thing. How do I update my info??? Follicular lymphoma for a year now. Good news is the other lymphoma seems to be gone. NED on that front NO Enemy detected!!! So R-Chop does work for DLBC. That is good news for many.
    Thanks
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  10. #250
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,392
    We'll take it! Now as to editing info:
    1. Go to the top right of the page and click on "Settings"
    2. 3rd box/panel down on the left margin of the page that pops up will be "My Settings" You can edit from that menu.

 

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