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Thread: Could someone please check on Didee?

  1. #1
    Senior User
    Join Date
    Sep 2016
    Posts
    310

    Could someone please check on Didee?

    Would really like to know how she is doing and send her our support. If anyone has her personal email, could you please check in and let us know? It's been almost four months since she posted. - VMarie
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,592
    VMarie, I have reached out to Didee to see how she is doing and will advise all when I hear back.

    Good health,

    kermica

  3. #3
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Thank you, Kermica!
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  4. #4
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,592
    Hi everyone. I have heard back from Didee and am pleased to report that she has made some incremental progress toward her recovery. She has been moved to a hospital only an hour from her home to continue her rehabilitation from the very serious side effects she suffered as a result of her transplant.

    It is her intent to rejoin us here when she gets released from the hospital and can return home. She asked me to thank everyone for their good thoughts and warm wishes so please join me in sending all positive thoughts to our dear friend.. I will let you know when I here further from her.

    Good health,

    kermica

  5. #5
    Newbie Top User BobInBonita's Avatar
    Join Date
    Mar 2014
    Posts
    1,790
    Di,

    You could almost hear the dread leave my body as it was replaced by joy. It was so good to hear about you. Every day, as I check new posts, I look for something from or about you. To hear you are recovering, no matter how slowly, is fantastic.

    My every wish that things continue to move in the right direction and that you're home soon.

    Bob
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  6. #6
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Thank you for checking, Kermica! Sending all best wishes to her for her recovery!
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  7. #7
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,438
    I can only echo what everyone has said.
    wishing her the speediest recovery and will be delighted to welcome her back.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  8. #8
    Quote Originally Posted by Kermica View Post
    Hi everyone. I have heard back from Didee and am pleased to report that she has made some incremental progress toward her recovery. She has been moved to a hospital only an hour from her home to continue her rehabilitation from the very serious side effects she suffered as a result of her transplant.

    It is her intent to rejoin us here when she gets released from the hospital and can return home. She asked me to thank everyone for their good thoughts and warm wishes so please join me in sending all positive thoughts to our dear friend.. I will let you know when I here further from her.

    Good health,

    kermica
    Thanks so much for checking and reporting Kerm. This post made my day!!!! Yaayyy! Didee!

    David
    67 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED.
    5/15/15: No NED this time. Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    3 yr. post SCT check up: all fine, no issues.

  9. #9
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Posts
    4,017
    What a relief to know our Di is moving forward in her recovery from unfortunate side effects but if you are checking in here Di when you feel up to it, you are one tough cookie and look forward to hearing from you when the time feels right.

    Many hugs and strength to our Di!

    Lisa

  10. #10
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,350
    really good to read you are making progress, I hope it quickens and you can make it home soon, sending lots of positive vibes so watch out for the bubbling cauldron as they land in Oz.

    take care
    hugs
    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.

 

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