knocks' Journey with Acute Myeloid Leukemia (AML)
- 1 Oh No Icon Oh No
- 2 Procedure or Surgery Icon Procedure or Surgery
- 3 Celebration Icon Celebration
- 4 Oh No Icon Oh No
- 5 Radiation Icon Radiation
- 6 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 7 Celebration Icon Celebration
- 8 Side Effects Icon Side Effects
- 9 Side Effects Icon Side Effects
- 10 Celebration Icon Celebration
- 11 Oh No Icon Oh No
- 12 Oh No Icon Oh No
- 13 Oh No Icon Oh No
- 14 Procedure or Surgery Icon Procedure or Surgery
- 15 Oh No Icon Oh No
- 16 Decision Point Icon Decision Point
- 17 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 18 Other Care Icon Other Care
- 19 Oh No Icon Oh No
- 20 Decision Point Icon Decision Point
- 21 Other Care Icon Other Care
- 22 Other Care Icon Other Care
- 23 Celebration Icon Celebration
- 24 Oh No Icon Oh No
- 25 Celebration Icon Celebration
- 26 Celebration Icon Celebration
- 27 Celebration Icon Celebration
- 28 Oh No Icon Oh No
- 29 Other Care Icon Other Care
- 30 Decision Point Icon Decision Point
- 31 Other Care Icon Other Care
Spouse/Partner: Leukemia > Acute Myeloid Leukemia (AML)
Patient Info: Prefer not to answer/not applicable/unsure, Diagnosed: about 9 years ago, Male, Age: 79
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Diagnosed
Oh No
Diagnosed 8 years ago with kidney cancer
Surgery
Procedure or Surgery
Partial nephrectomy. Surgery completely successful
Cancer cured
Celebration
This person has yet to add any details about this experience.
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.
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.
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.
Finished treatment
Celebration
Tumor gone. No evidence of spread beyond lymph nodes in neck.
Anemia (low red blood cell counts)
Side Effects
Marginally low counts, but transfusion independent. Bone marrow biopsy negative. Ongoing monitoring.
Low platelet counts (thrombocytopenia)
Side Effects
Marginally low platelet counts, transfusion independent except before surgical procedures. Ongoing monitoring.
Still cancer free at 4 years.
Celebration
This person has yet to add any details about this experience.
transfusion needed
Oh No
Hb lower, shortness of breath and fatigue. Needed packed red blood cell transfusion.
More transfusions
Oh No
Began needing RBC transfusions every 2 weeks or so. Referred for bone marrow biopsy.
Multiple ER visits
Oh No
with pain in legs, fevers of 102, chills and rigors.
bone marrow biopsy
Procedure or Surgery
This person has yet to add any details about this experience.
Diagnosed
Oh No
MDS (myelodysplastic syndrome) secondary to chemo for previous nasopharyngeal cancer. Dx almost exactly 5 years from Dx with earlier cancer.
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.
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.
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.
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.
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.
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.
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.
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!
Spouse/Caretaker has sore throat
Oh No
Because of neutopenia cannot risk exposure. I cannot visit him in the hospital.
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.
Discharged from hospital
Celebration
5/25/12 - Discharged from hospital
Sister came to visit
Celebration
This person has yet to add any details about this experience.
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.
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.
Decision Point
Decided to accept referral to Hospice provided transfusion can still be received.
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.