Progress Notes-Chronological

As discussed here, I was diagnosed with advanced melanoma in late 2013. It has been a wild ride since, and I thought it would be good to document the many steps in my journey. I’m hoping this will be a useful record not just for myself, but my family and friends, as well as those that might be facing a similar journey themselves. This document will evolve over time, both as I go back through the last few years and find things to add, but also as my story continues to unfold.

To see my medical history organised by system, see this post here.

2013

October

  • 30th
    • Drove myself to John Hunter Emergency Department with abdominal and flank pain, had had some vomiting and diarrhoea the week before
    • Had a CXR which showed a large mediastinal mass, and a smaller nodule in the right lung.
    • CT showed additional nodules in the lungs and abdomen, and an additional mass in the left adrenal gland

November

  • 1st
    • Had bronchoscopy performed at John Hunter
  • 7th
    • Reviewed at the Mater, and given the diagnosis of melanoma
    • Referred to the Melanoma Unit
  • 8th
    • Head CT shows brain metastases
    • Started prednisone
  • 13th
    • Brain MRI showing additional micrometastases
  • 15th
    • Craniotomy at John Hunter Hospital for removal of large left parietal melanoma
  • The melanoma was found to be BRAF negative. Referred to Radiotherapy for palliative whole brain radiotherapy (WBRT)
  • Planning began for starting Ipilimumab once radiotherapy had finished

December

  • 2nd
    • Began a course of WBRT with integrated boost and hippocampal sparing at The Mater, Crows Nest
  • 20th
    • Completed last of 15 fractions of WBRT
  • 24th
    • Consultation for consideration for inclusion in the Checkmate-67 Clinical Trial
    • Registered, but had to show brain mets were stable by waiting for 8-weeks after completion of the WBRT and then re-scan.

2014

January

  • Intermittent diarrhoea. No organisms grown from stool sample.
  •  26th
    • Admitted to the Calvary Mater Newcastle with fever and vomiting
  • 27th
    • Increasing right iliac fossa pain
    • CT scan showed inflammation and matted bowel in the right iliac fossa, and an increase in the size of the previously noted abdominal mets.
    • Diagnostic laparoscopy showed widespread melanoma mets and a bowel obstruction. Converted to laparotomy and performed right hemicolectomy, and 3x small bowel resections.
    • Thoracic epidural and one night in Intensive Care
  • 31st
    • CTPA for ongoing sinus tachycardia and shortness of breath-no PE detected

February

  • 3rd
    • Repeat CT abdo for ongoing diarrhoea, nausea and vomiting. No abnormality detected
  •  6th
    • Discharged from The Mater
    • Lost ~10kg during admission
  • Ongoing diarrhoea, vomiting, anorexia & weight loss following discharge
  • 21st Started the Checkmate-67 Clinical trial
    • Ipilimumab (Yervoy) vs Nivolumab(Opdivo) vs Ipili + Nivo

March

April

  • 11th
    • Presented to The Mater with fever, and severe nausea and vomiting
    • Abdo CT showed a small bowel obstruction and reduction in the size of the abdominal and adrenal mets
    • Laparotomy: adhesiolysis
    • Malnourished and underweight
      • Electrolyte replacement due to risk of refeeding syndrome
      • Total parenteral nutrition
  • 20th
    • Discharged from The Mater
  • Ongoing anorexia, diarrhea, & vomiting.
    • Weight loss since diagnosis ~25kg
  • 29th
    • Gastroscopy and colonoscopy
    • Pathology showed gastritis and colitis

May

  • Ongoing insomnia, anxiety, depression, anorexia etc
    • Started on mirtazapine
  • Thyroiditis with hyperthyroidism
  • 14th
    • New infiltrate in right middle lobe on progress CT Scan
  • 22nd
    • Bronchoscopy
    • Pathology was positive for RSV

June

  • Developed widespread vitiligo, affecting both skin and hair pigment

July

  • Ophthalmology review for decreased visual acuity (6/12 and 6/7.5 and reading N.8)
    • OCT showed bilateral macular oedema
    • Started on ranibizumab (Lucentis) injections

November

  • Now hypothyroid
    • Started thyroxine

2015

  • Continued fortnightly infusions as part of Checkmate-67
  • Continued ranibizumab injections to good effect

2016

February

  • 10th
    • Reviewed by dermatologist due to subjective hypohydrosis
      • Biopsy inconclusive

July

  • 25th
    • Thermoregulatory sweat test showed universal anhydrosis

November

  • 1st
    • Reviewed by rheumatologist due to increasing pain and swelling, with decreasing motion of the left knee.
      • Joint aspirate showed no gout or infection
      • Diagnosed with autoimmune arthritis
      • Given steroid injection and started NSAID’s
      • Also iron deficient
    • 12th
      • Knee pain returned
        • Started prednisone

December

  • 6th
    • Persistent knee pain
      • Started by hydroxychloroquine (Plaquenil)
  • 12th
    • Gastroscopy/Colonoscopy
    • Pathology showed colitis and gastritis had resolved

2017

January

  • 17th
    • PET scan showed:
      • low avidity lesion in the apex of the right lung
      • Focal avid FDG uptake in the left hilum
      • Focal uptake left adrenal
      • Uptake in left knee consistent with auto-immune arthritis

March

  • 7th
    • Persistent knee pain and swelling
    • Started sulfasalazine
  • 21st
    • Iron-deficiency anaemia
      • Iron infusion
      • Spatone

April

  • 13th
    • Reviewed by neurologist
    • Diagnosed with complex migraine with aura
  • 15th
    • Persistent iron deficiency despite normal gastroscopy
      • Capsule endoscopy showed a slow bleeding ulcer in the mid-small intestine
    • Had a small intestine MRI which showed no obvious source of bleeding

August

  • 10th
    • Ongoing knee pain
      • Started methotrexate/folic acid
      • Triggered major flare-up in colitis
      • Ceased methotrexate and started high dose prednisone

September

  • 20th
    • Persistent colitis symptoms
      • Plan to start to adalimumab (Humira)

October

  • 17th
    • Stool cultures and PCR negative
    • Faecal calprotectin elevated (532)
      • Diagnosed as drug-induced colitis from immunotherapy/methotrexate
  • 30th
    • Reviewed by a respiratory physician for a TB risk assessment prior to beginning TNF-blockade
      • Quanterferon Gold result intermediate, but felt risk is low, so OK to start adalimumab

November

  • 27th
    • Started adalimumab to control both the colitis and the arthritis

2018

February

  • 6th
    • PET scan showed:
      • right lung apex lesion had resolved
      • uptake in the left hilar region smaller and less intense.
      • Uptake in adrenal gland less marked
      • Increased uptake in bowel consistent with colitis
      • Uptake in left knee less marked

March

  • 19th
    • Gastroscopy/Colonoscopy
      • Confirmed ongoing colitis
      • Showed fungal oesophagitis
        • Amphotericin lozenges

June

  • 12th
    • Shingles
      • Aciclovir

July

  • The trial was unblinded. I received both ipilimumab (for 3 months) and nivolumab (ongoing), which is what my specialist had suspected. I will continue to receive nivolumab
  • Ongoing colitis
    • Increased prednisone dose up 75mg/day
    • Started Vedolizumab
    • Paused nivolumab & Humira

September

  • Had to stop Checkmate 067 Trial due to prolonged period without trial drug
  • Continued Vedolizumab, while attempting to wean prednisone

November

  • 6th
    • Reviewed by ophthalmologist for worsening visual symptoms
      • Worsening bilateral cataracts most likely due to prednisone use over several years.
      • Planned for left-sided surgery in February 2019

2019

January

  • 31st
    • PET scan showed increased focal uptake in the left hilar lesion compared to the last study.
      • Discussed at melanoma Multidisciplinary Team Meeting:
        • Not for additional treatment at this stage
        • Increase frequency of progress scans

February

  • 11th
    • Had left cataract removed

March

  • 8th
    • PET scan showed uptake in the left hilar region had decreased since the last scan in January
      • Repeat in 3 months
  •  7th
    • Reviewed by ophthalmologist due to worsening visual acuity in the left eye
      • OCT showed macular oedema
      • Conservative management and review for consideration of restarting ranibizumab in the future

 

Ongoing/Recurrent issues

Vision

Between the worsening cataract on the right side and the recurrence of the macular oedema following removal of the left-sided cataract, I continue to struggle with glare and a poor dynamic range. Visual acuity and reading have also been affected

Anaemia

My haemoglobin and iron levels have fluctuated quite a bit over the years, and are probably a combination of iron deficiency from GI losses, and anaemia of chronic disease. I remain on oral iron replacement with Spatone, and recently it’s been in the low-normal to mild anaemia range.

Hypothyroidism

As is typical for the PD-1 inhibitors, I initially developed a thyroiditis and hyperthyroidism, which then reversed and I became hypothyroid. It took a while to stabilise my dose of thyroxine, but it has been steady at 100mcg/day for a while now.

Vitiligo

The depigmentation is pretty widespread but has never been complete. There have always been some brown patches left on the hair on my head, and every I notice some darker hairs in my beard if I don’t shave for a few days. Occasionally it even seems that some of the pigment returns. Wondering if this may be related to times when I’ve needed prednisone?

Cramps

Have noticed over the years since diagnosis that I get more cramps than I did pre-diagnosis, and they seem to be less related to physical exertion than previously. They occur most frequently in my hands, feet, fingers and toes

Fatigue & Insomnia

Variable & multi-factorial.  Stress, anxiety, depression have played a part at various stages, but so have symptoms from immunotherapy such as colitis & arthritis, as well as medication side-effects, especially prednisone

Arthritis

Will occasionally get pain in my right knee, though it is subjectively different to the previous pain, and with less swelling. Still suffering from quads wasting and weakness on the left side. Pain in other joints as well, particularly those of the fingers & hands