knocks' Journey with Acute Myeloid Leukemia (AML)

Spouse/Partner: Leukemia > Acute Myeloid Leukemia (AML)

Patient Info: Prefer not to answer/not applicable/unsure, Diagnosed: almost 5 years ago, Male, Age: 75

  1. 1
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    almost 5 years ago
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    Diagnosed

    Oh No

    Diagnosed 8 years ago with kidney cancer

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  2. 2
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    almost 5 years ago
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    Surgery

    Procedure or Surgery

    Partial nephrectomy. Surgery completely successful

    Went as Expected: Strongly Agree
    Minimal Recovery: Not Specified
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  3. 3
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    almost 5 years ago
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    Cancer cured

    Celebration

    This person has yet to add any details about this experience.

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  4. 4
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    almost 5 years ago
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    Diagnosed

    Oh No

    Cancer of the nasopharynx diagnosed 5 years ago on biopsy. Not related to earlier kidney cancer. Lymph node involvement, but no evidence of spread to other organs.

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  5. 5
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    almost 5 years ago
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    External radiation

    Radiation

    Radiation caused permanent damage to salivary glands and taste buds. Permanent dry mouth and some loss of taste. But he's alive.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Surprised at how few side effects. We expected hideous nausea and vomiting - like they talked about in the 60s and 70s. Anti-nausea meds were completely effective and there was no hair loss. Veins "blew out" and started to have trouble finding a vein for counts. Inside of mouth very tender from chemo and radiation, but healed quickly after.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  7. 7
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Finished treatment

    Celebration

    Tumor gone. No evidence of spread beyond lymph nodes in neck.

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  8. 8
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Anemia (low red blood cell counts)

    Side Effects

    Marginally low counts, but transfusion independent. Bone marrow biopsy negative. Ongoing monitoring.

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  9. 9
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Low platelet counts (thrombocytopenia)

    Side Effects

    Marginally low platelet counts, transfusion independent except before surgical procedures. Ongoing monitoring.

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  10. 10
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Still cancer free at 4 years.

    Celebration

    This person has yet to add any details about this experience.

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  11. 11
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    transfusion needed

    Oh No

    Hb lower, shortness of breath and fatigue. Needed packed red blood cell transfusion.

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  12. 12
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    More transfusions

    Oh No

    Began needing RBC transfusions every 2 weeks or so. Referred for bone marrow biopsy.

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  13. 13
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Multiple ER visits

    Oh No

    with pain in legs, fevers of 102, chills and rigors.

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  14. 14
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    bone marrow biopsy

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Strongly Agree
    Minimal Recovery: Not Specified
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  15. 15
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Diagnosed

    Oh No

    MDS (myelodysplastic syndrome) secondary to chemo for previous nasopharyngeal cancer. Dx almost exactly 5 years from Dx with earlier cancer.

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  16. 16
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Decision Point

    Treatment has 30% chance of remission. No possibility of cure. 50% chance of progression to leukemia without treatment or if treatment is unsuccessful. Treatment will decrease counts and increase transfusion dependency before counts rebound.

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  17. 17
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Some nausea during chemo despite medication. Counts plummeted. Began needing RBC transfusions with increasing frequency until needed every three days. Began needing platelet transfusions every week.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  18. 18
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Hospitalization

    Other Care

    3 weeks post-chemo hospitalized with GI bleed. On admission, two days after receiving two units of RBC and 6 days after platelets, Hb was 4.8 and platelets were 7. Was given 4 units of RBC and 3 of platelets. Numerous test for GI bleed, all inconclusive. Discharged 16 days after admission.

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  19. 19
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    neutropenia

    Oh No

    WBC began falling for first time while in hospital. Put in reverse isolation and put on Neupogen. Counts improved on neupogen but will probably fall once discontinued on discharge.

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  20. 20
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Decision Point

    Chemo showed no positive effect. Probable progression to leukemia. Counts now so low further chemo is extremely risky. Options now are: 1) bone marrow transplant (extremely high risk at age 70 with very low odds of success) 2) induction therapy for leukemia (also very high risk with low odds of success, would require hospitalization in other city) 3) supportive transfusions 4) no treatment or supportive care. Decided to go with supportive transfusions. No predictions re: time left, but AML is terminal in months without treatment. Also unable to go back to work because of neutropenia.

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  21. 21
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Transfusions

    Other Care

    Receiving platelet transfusions 2x week whenever counts drop below 10. Considering dropping transfusion trigger to 5 after Memorial Day weekend. Not sure of transfusion frequency for RBC since they transfused so many units in hospital.

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  22. 22
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Hospitalization

    Other Care

    Saw oncologist on Friday (2 weeks post discharge) and feeling fine. Saturday woke with severe sore throat, temp 101.7, inability to swallow even water without choking. Hospitalized on antibiotics and nystatin (for oral thrush). Platelet count at 26 on admission. NPO (no food, liquids, or medication by mouth) on admission due to risk of aspirating while swallowing. Difference of opinion on cause of sore throat. Hospitalist (who came on Monday 2 days after admission) believes spontaneous bleed in esophagus. We believe esophageal thrush first caused lesions in throat which began bleeding Monday or Tuesday when platelet count dropped below 10, and began resolving Tuesday with platelet transfusion. Hospitalist sees this as second spontaneous bleed and reason to consider discontinuing transfusions and entering hospice. We want to treat for thrush and see if thrush recurs when antifungal is discontinued before making decision. Hospitalist has agreed to begin IV antifungal for treatment of esophageal thrush despite difference of opinion.

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  23. 23
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Breakthrough

    Celebration

    Passed swallow test (partially) on fifth day of hospitalization. Swallowing is still delayed with some air penetration. Allowed to eat dinner (pureed meatloaf, pureed green beans, mashed potatoes, thickened apple juice). All solids must be pureed and liquids thickened to nectar consistency, but it is food!

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  24. 24
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Spouse/Caretaker has sore throat

    Oh No

    Because of neutopenia cannot risk exposure. I cannot visit him in the hospital.

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  25. 25
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Swallow improving, discharge planned

    Celebration

    Diet advanced further. Antibiotics discontinued. Antifungal continued, but will switch to pill or liquid depending on swallowing. Discharge planned for tomorrow after platelet transfusion. I will have to take cough suppressant and wear mask and gloves around him until sore throat and cough are gone.

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  26. 26
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Discharged from hospital

    Celebration

    5/25/12 - Discharged from hospital

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  27. 27
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Sister came to visit

    Celebration

    This person has yet to add any details about this experience.

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  28. 28
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Return to hospital

    Oh No

    Sore throat - fever 102. temp down by the time we reached ER but hospital decided to admit & start IV antibiotics and oral antifungals. Also ankle very swollen and painful. Ultrasound for blood clot negative. X-ray shows no fracture. Nurse wrapped and swelling decreased. Recommendation to keep wrapped and Tylenol around the clock.

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  29. 29
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Palliative care

    Other Care

    Meeting with Palliative Care Team on 6/5. Learned that transfusions are possible with hospice care. May have to be symptom based, rather than regularly scheduled. So instead of going to oncologist every Mon and Thurs for CBC, would wait til felt like needed transfusion, call Hospice, nurse would draw blood and send to lab, oncologist would review and make appt for transfusion. Might be 48 hour lag before receiving transfusion. Husband seems OK with this. Team intimates that it is weeks or months til death, but that no one can predict.

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  30. 30
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Decision Point

    Decided to accept referral to Hospice provided transfusion can still be received.

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  31. 31
    • knocks
    • Experience with Acute Myeloid Leukemia ...
    over 4 years ago
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    Hospice

    Other Care

    Appt in hospital with Hospice liaison. Intake appt set for Saturday 6/9. Received call from Hospice for a different county. Some confusion re: county of residence vs. county of PO. Switching to county of PO - says all is approved. Intake appt changed to Thursday 6/7. Need to make sure can still get transfusions at hospital in county of residence where we know everyone.

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