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Thread: Advice for AML end stages

  1. #1
    Newbie New User
    Join Date
    Mar 2011

    Advice for AML end stages

    Hi everyone. My sister in law (24) was diagnosed with AML last May 2010, she has gone through many rounds of chemo to no avail. She was sent home from the hospital 3 weeks ago with 4-6 weeks left to live. I guess why I am writing is just to find out what we should expect. She has three little ones and I need to know how to prepare our little family. Her oxygen has been at 88% for a week, she has staph infections in her blood and 103 degree fevers that they cannot break. I know the end is coming, just needing to know a little first hand....Thankyou for taking your time to write to this.

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    New York
    Hi Kayla, and I am very sorry for what you and your sister in law are going through right now. In looking around for substantive answers for you I did see reference to the need for re-orientation so I suspect that confusion may be an element of end stage for this disease but I don't know that we can really answer your question here. I think the fundamental advice in the end stage of cancer is to be there for your loved one - to care, to spend time, to reassure her that things will be okay for her children, etc...

    Have you contacted hospice? They are the experts in managing end of life issues so should certainly be better qualified than I to answer your specific questions. Of course, they can also offer tangible and meaningful support as your sister in law makes this part of her journey.

    My heart goes out to you, Kayla, be as strong as you can and feel free to come here again for support, to vent or for any other reason that you think will help you.

    My thoughts and prayers are with you and your sister in law...

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 66
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

    December 2017 - Biopsy of external iliax node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.


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