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Thread: Diagnosed today (11-17-2017)

  1. #61
    Senior User
    Join Date
    Oct 2013
    Posts
    231
    What a nice post. Someone told me that the anxious mood before and after the scan is called "scanxiety" so perfect of a word. Enjoy Christmas and may the new year to come be full of health.
    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. #62
    Experienced User
    Join Date
    Nov 2017
    Posts
    71
    Hi all another update from us. All remains the same ( yesssss ) blood works are good and wife had a healthy winter, away from nasty colds and flus.

    The PET from last December revealed some hot spots in the uterus, but we were then re assured they were patologic ( from menstruation ) we we kind of set that aside on our minds.....nevertheless was nice having a scan in middle February just to be sure.

    These days mark the 1 year after PET after end of R-CHOP ... discussed this dates with doctor but she said that close to 40% of remissions will relapsed ( I thought the number was lower ) and of those 90% happened on the first 5 years. So yes she would prefer to keep follow up for the 5 years, altought the intervals will be getting bigger.
    For this particular case she in not concerned....next appointment will be September. Hope I won’t need to see her before that

    As a negative update we still keep waiting for UK hospital to send wife documentation to the current one. Request was done in December but still nothing as arrived!!!! I will be in the UK next week trying to chase the hospital.

    We learn to live with this experience and despite still being in the relapse risk period we have been enjoying the good moment life brings us, never taking anything for granted. It’s a cliche but one that suits us in this moment of life.
    Memories....good memories are the living proof that we are together and happy.


    Good health for everyone!!! Take care.
    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!
    ... on to follopw ups...

  3. #63
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,324
    Hi, and good to see the update and that all is well, ignore the stat the consultant gave, I have just checked and for people like your wife the rate is only 10% to 20% relapse and all relapse rates are at least 5 years out of date, and most happen during the first 2 years, so continue living and enjoying life, its much more fun.
    best wishes to you both and your family.

    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.

  4. #64
    Experienced User
    Join Date
    Nov 2017
    Posts
    71
    Thanks Johnr .... we are in a good moment of our live... will continue enjoying it.
    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!
    ... on to follopw ups...

  5. #65
    Experienced User
    Join Date
    Nov 2017
    Posts
    71
    Hi all,

    today marks 1 year since wife finsihed all treatment ( RCHOP+ Rads + HDMTx ), i guess this means we are half-way to the 2 year mark.

    Much happened to us during this last year....moving country, new house, new friends, new jobs and new experiences, all of those has kept us busy with live ... and how good that is.

    All the best for everyone.

    Take care.
    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!
    ... on to follopw ups...

  6. #66
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,324
    1 year is a good milestone lets hope the next 12 months are uneventful and dominated by daily living and family life
    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.

  7. #67
    Experienced User
    Join Date
    Nov 2017
    Posts
    71
    Thanks Johnr, and i do hope so.

    Take care.
    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!
    ... on to follopw ups...

  8. #68
    Senior User
    Join Date
    Oct 2013
    Posts
    231
    This is great news. I bet your wife has never been so happy to have a visit from Aunt Flow hope that joke translates. I do want to say to you that R-CHOP can work. My other half did the same thing and his DLBC has been non detected for 5 years. I hope you and your family are enjoying the little things and milestones in life. This is really a nice update from you.
    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.

 

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