knocks' Journey with Acute Myeloid Leukemia (AML)

Diagnosed 8 years ago with kidney cancer

Partial nephrectomy. Surgery completely successful

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.

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

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.

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

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

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

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

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

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

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

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.

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.

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.

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.

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.

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.

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.

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!

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

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.

5/25/12 - Discharged from hospital

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.

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.

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

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.