Progress Notes-By System

This post outlines my medical history organised by system, since being diagnosed with advanced melanoma in October 2013. To see my medical history organised chronologically, see this post here. It remains a work in progress as new issues arise, and as I go back through my records and find things I’d overlooked.

Cardiovascular System

2014

  • During the period of hospital admissions for bowel resections, and starting the Checkmate-067 clinical trial,  I had recurent episodes of sinus tachcardia for which no cause was found.

2018

  • Found to have mild-moderate hypertension. Not currently in anti-hypertensives.

Respiratory System

2013

October

  • Presented to ED on the 30th with left sided abdominal and flank pain. The workup included a chest x-ray which should a large mass in the left hilum
  • Had a chest/abdo/pelvis CT scan which showed the large mass in the mediastinum, as well as some smaller lung masses more peripherally in both the right and left lungs. Additonal masses noted in the abdomen and pelvis.
  • Discharged and asked to represent for a broncoscopy 2 days later.

November

  • Had a bronchoscopy on the 1st, which showed a lesion in the bronchial tree suspicous for melanoma. This was subsequently confirmed by histology on the biopsies taken.

2014

February

  • Had first infusion as part of the Checkmate-067 RCT, which was comparing ipilimumab alone, with nivolumab alone, and with a combination of the two.

April

  • CT scan performed during admission for a bowel obstruction showed lung lesions had shrunk significantly since starting immunotherapy.

May

  • Shadow discovered on routine chest CT, along with an ongoing, mildly productive cough. Referred to infectious diseases, who suggested bronchoscopy.
  • Repeat bronchoscopy on the 22nd. Washings showed RSV pneumonia.

2018

February

  • PET scan showed low grade focal uptake in the left lung hilum.

2019

January

  • PET scan showed persistant FDG uptake in the left hilum with the SUV max increasing to 5.15 from the 3.72 reading in February 2018.

March

  • PET scan again showed focal FDG uptake in the left hilum., but the SUV max fell from 5.15 to 3.06.

Nervous System

2013

November

  • Brain CT and MRI showed multiple brain metastases. One large one, two smaller ones, and dozens of tiny ones.
  • Had a craniotomy to remove the largest metastasis. The surgery and recovery were “uneventful”.

December

  • 15 rounds of whole-brain radiotherapy with integrated boost and hippocampal sparing.

2014

February

  • Had first infusion as part of the Checkmate-067 RCT, which was comparing ipilimumab alone, with nivolumab alone, and with a combination of the two.

2016

February

  • Reviewed by neurologist as part of a return to work plan. Underwent neuropsychological assessment and EEG testing. Given the ok to return to work.

2017

  • Reviewed by neurologist due to symptoms of headaches, scotomas and word-finding difficultes.
  • Also repeated neuropsychological testing.
  • Diagnosed with migraines with aura, but neuropsych testing was fine, so OK to continue work.

2018

February

  • PET scan showed no focal uptake of FDG in the brain.

2019

January

  • FDG distribution in the brain remained normal.

March

  • FDG distribution in the brain remained normal.

May

  • Woke up at 5 am on the 8th with left-sided numbness. Got up, went to the toilet, had a drink of water and went back to bed. Symptoms subsided quickly and I went back to sleep.
  • Woke up later with a mild headache, but was able to go to work in the morning.
  • Headache became worse again after I returned home in the afternoon. About 3 pm, I took some aspirin and went to bed.
  • Headache continued to worsen and I developed nausea, word-finding difficulties and right-sided numbness.
  • Started vomiting, and word-finding difficulties progressed into expressive aphasia, with a “word-salad” and incomprehensible sounds.
  • Driven to the ED and admitted into the stroke pathway. Ruled out any acute pathology with a brain CT, so given a provisional diagnosis of partial seizures and started in IV levetiracetam.
  • Symptoms had resolved by the next morning. MRI confirmed no stroke, and an EEG the next day while asymptomatic didn’t reveal any pathology.
  • Discharged on the 10th on oral levetiracetam and told not to drive for 6 months.

July

  • In the early hours of the 24th, I woke up with a numb left middle finger.
  • The numbness progressed to include all of my left arm, and I developed a severe headache with nausea and vomiting.
  • I took some aspirin, and tried to go back to sleep but with not much success
  • Began to feel better by about 8 am, and the symptoms continued to improve and were gone by about midday.

Vision

2014

July

  • Developed blurred vision.
  • MRI didn’t reveal any new issues. Reviewed by ophthalmologist on the 21st, and diagnosed with bilateral macular oedema. Started ranibizumab.

2016

  • Vision improved with ranibizumab so continued with monthly injections, alternating between left and right eyes.
  • Was eventually able extend the interval between doses and wean off it completely.
  • Last visit to ophthalmogist for review was December.

2018

  • Developed bilateral cataracts, most likely secondary to numerous periods of high dose corticosteroids since diagnosis

2019

February

  • Left cataract removed.
  • After ~2 weeks of significantly improved vision in that eye, it began deteriorating again.
  • Reviewed by ophthalmologist who diagnosed me with macular oedema again.
  • Initial management was conservative, with continuation of steroid eye drops, and ongoing review.

April

  • Macula oedema hadn’t improved. Had a single injection of ranibizumab.

August

  • Macula oedema had significantly improved, but still some blurred vision. On examination, noted to have cells on the front of my lens indicative of inflammation.
    • Restarted steroid eye drops.
    • Right cataract remains stable.

Gastrointestinal System

2014

January

  • Developed increasing lethargy, diarrhoea, nausea and decreased appetite.
  • GP ordered stool MCS, but did not show any abnormalities.
  • On the 26th, this worsened and developed a fever with nausea and vomiting, and mild abdominal pain.
  • Presented to the emergency department, and passed out in the ambulance bay.
  • Admitted under oncology, and started antibiotics.
  • Overnight, the abdominal pain increased and localised to right iliac fossa.
  • Referred to surgery, who found a mass in the right iliac fossa, and organised a CT scan.
  • CT scan showed bowel obstruction with a phlegmon in the right iliac fossa, with appendicitis as one of the differential diagnoses.
  • Progressed to emergency laparoscopy that day, but quickly converted to laparotomy.
    • Showed melanoma deposits throughout the abdomen.
    • Had a right-hemicolectomy and 3 small sections of the small bowel removed, with diathermy to numerous other small melanoma deposits.
  • Admitted to intensive care post-op, with a thoracic epidural in situ.
  • Epidural initially good, but became patchy so removed after a few days.
  • Ongoing fevers, tachycardia, diarrhoea and anorexia during admission
    • Abdo CT and CTPA excluded obstruction and PE
    • Maintained on antibiotics throughout admission

February

  • Discharged on the 2nd
  • Ongoing poor appetite and diarrhoea post-discharge, and occasional vomiting, with associated weight loss.
  • First infusion as part of the Checkmate-067 clinical trial on Friday the 21st. I was randomised to receive either ipilimumab, nivolumab, or a combination of the two.

March

  • Started acupuncture to help with the ongoing vomiting.

April

  • Woke up on the 11th with severe nausea and vomiting.
    • Advised by oncology nurse to attend the ED.
  • CT abdomen showed bowel obstruction.
  • Made nil by mouth, given IV fluids, and a nasogastric tube on low-wall suction.
  • Laparotomy on the 12th, which showed a small bowel obstruction secondary to adhesions.
  • Difficulty reinstituting diet post-op, with ongoing anorexia and vomiting.
  • Significant weight loss, malnourishment and electrolyte depletion.
  • PICC line inserted, high-level electrolyte replacement given, then started TPN.
  • Slowly reintroduced diet. Bowel activity slow to restart post-op, and then developed diarrhoea.
  • Pyrexia of unknown origin, and started IV antibiotics.
  • Discharged on the 20th on a light diet, but still ongoing issues with vomiting, diarrhoea, anorexia, and weight loss.
  • My surgeon performed a colonoscopy and gastroscopy on the 29th to investigate the persistent gastrointestinal symptoms.
    • Nothing obvious macroscopically, but biopsies revealed gastritis and colitis.
  • Reviewed by gastroenterologist. Prescribed domperidone to help improve gastric emptying.

May

  • In late May, the regime for the clinical trial changed to fortnightly infusions, as the ipilimumab component, whether placebo or actually ipilimumab, stopped after 3 months.

Late 2014

  • Gastrointestinal symptoms gradually improved over the rest of 2014, and the lethargy and fatigue also began to improve.

2016

November

  • Diagnosed with iron-deficiency anaemia, likely secondary to GI losses.
    • Started Spatone iron replacement.
    • Referred back to gastroenterologist.

December

  • Gastroscopy and colonoscopy performed on the 12th
    • Showed pre-pyloric gastric erosions and a nodule at the bowel anastomosis which was biopsied.

2017

January

  • Reviewed by gastroenterologist. Confirmed colonic biopsy was normal.
    • Advised to stay on proton pump inhibitor because of the gastric erosion.

March

  • Ongoing anaemia despite Spatone and PPI.
  • Reviewed by gastroenterologist on the 9th.
    • Suggested a “capsule study”.
  • Reported on the 21st. Showed an ulcer in small intestine which was slowly bleeding.
    • Suggested an MRI of the small intestine, which was performed on the 28th. Did not reveal the source of the bleeding.
  • Had 2x iron infusions at GP surgery.

August

  • Reviewed by rheumatologist and commenced methotrexate to help control inflammatory arthritis in the left knee.
    • After only 3 does, developed significant diarrhoea, with frequency and urgency.
    • Ceased methotrexate and increased prednisone dose which improved symptoms.

September

  • Reviewed by rheumatologist again. Keen to start a TNF-blocker such as infliximab or adalimumab, as it should help with both the colitis and the arthritis.
  • Referred to respiratory physician to assess for risk TB reactivation secondary to TNF blockade.

2018

February

  • PET scan showed “prominent uptake in bowel, particularly the transverse descending and rectosigmoid colon.” This was most likely due to colitis.

April

  • Gastroenterologist confirmed diagnosis of colitis on the basis of the recent scopes and biopsies.

2019

January

  • FDG distribution in the bowels had returned to normal.

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