First notice dark mark on scalp. Dr says it's birth mark.
October 2013
Notice lump in back of neck (swollen lymph node).
Two doctors say it's nothing.
Putting 2+2 together, I demand biopsy.
January 2014
Results come back positive for malignant melanoma (stage IIIc at this
point; total fuckup from Doctors, who basically reduced my 5-year survival odds
from 90% to 20%. Most doctors
are bad at their job, have huge egos, and not at all focus on diagnosis and prevention,
do your own research always).
March 2014
Surgery #1: Removal of lymph nodes in back of neck to the right (one enlarged), and skin graft to scalp.
April 8, 2014
1 lymph node came back positive.
New lump (visibly swollen) found under right ear. Waiting for second surgery date.
Nodules in lungs show up in CT. No change in size between scans so not necessarily melanoma.
April 05, 2014
More lymph nodes removed from neck. A few are swollen. One positive for melanoma.
Summer 2014
Surgery #2.
Entered Ipilimumab (Yervoy) trial for adjuvant treatment. 3 mg/kg.
Finished 4 infusions.
Only side effects are mild tiredness, muscle weakness.
September 2014
Melanoma came back in one lymph node in the neck (same site as before).
Surgery #3 for removing lymph nodes.
Some facial nerves damage (trouble moving right side lower lip), and right side of neck very swollen this time.
November 2014
First round of maintenance Ipilimumab (every 3 months). 3 mg/kg.
June 2016
4 Lung nodules found. No symptoms. Now officially stage IV.
Start PD-1 Inhibitor infusions.
Not many side effects, but being lead developer for early-stage
startup while dealing with stage IV cancer is definitely not recommended.
Two thumbs down.
September 2016
Hospital after enlarged lung tumor, swollen lungs. Worst pain ever! Insane pain. Almost couldn't breather for 2 hours. Finally they give me antiinflamatories that work. (Picture above.)
PD-1 failed obviously. Lung tumors 4x4 cm.
Started Dabrafenib (BRAF inhibitor) + Mekinist combo.
Feel almost immediately better. Riding my bike 3 days after hospital visit.
November 2016
Lung tumors seem shrinking and stable. Shrank to 6mm.
Side effects are manageable: some tiredness, muscle weakness, I get a really high fever every 2-3 weeks and have to discontinue for a few days until subsides.
February 2017
Really bad upper back pain, persists through the night.
New tumor near spine pressing on nerves, and another one upper chest (lung?) found.
Spine very painful, Hard time sleeping or focusing.
Given morphine pills. I only take the quick-release every couple of
days when needed. Back pain has plateaued.
Back pain mysteriously better since the 5th, so no excuse to take
morphine. Double poop.
Two back-to-back sessions of high dose radiation to spine
tumor.
tl;dr:
March 2017
Have to go 4 weeks treatment-free to be able to enter clinical trial.
Back pain is back. Taking a lot of Advil / Tylenol / morphine.
April 2017
lung biopsy for trial.
Receive first infusion for
Phase I trial for PD-1 + immune therapy combo
(MTIG7192A + Atezolizumab) (trial link).
Trial failed, mass in right lung grew to 12x10cm, left lung mass
larger and wrapping around rib.
Spent two weeks in bed in hospital: right lung mass extremely
painful, left lung partially collapsed and filled with fluid, some sort
of lung infection (fever).
First week at home spent mostly in bed. Slowly feeling better.
First xray shows right-lung tumor slightly smaller, possibly from
either radiation or drugs.
Very little fluid in lungs, no need for more tubes.
July 2017
Back pain is returning. Doctor thinks BRAF meds might be wearing off
again.
Pain extends to elbow now too.
CT scan shows no change in right-lung tumor, left-lung tumor
doubled in size, pushing on ribs and clavicle.
August 2017
Surgery: biopsy of left-lung tumor to
harvest for possibly TIL
therapy.
Sept 2017
I HAVE KIDNEY STONES. Seriously? -- Extremely painful day at the
hospital.
TILs were successfully harvested. Scans show no new disease, but left
tumor is increasing in size, causing damage to ribs and a lot of pain.
TIL therapy postponed. Will talk to radiation about treating tumor
with radiation first to control pain.
Pain is now debilitating. Pretty much lost use of my left arm at
times, and
can't lift anything due to back pain. Significant loss of mobility.
Increased hydromorphone dose and on a course of steroids to reduce
inflamation, pain a little better.
Radiation: one week of radiation to left
shoulder tumor. Looked at the CT scan, it extends all the way down to the
ribs above the heart -- pressing on a lot of nerves and causing pressure
to rubs.
October 2017
After radiation, tumor in shoulder shrank after two weeks. Back / arm
pain significantly decreased. Lowered hydromorphone dose from 74mg / day
to 12mg / day.
Extreme fatigue for a few weeks.
Nov 2017
New scans show no new mets again. Right lung tumor keeps shrinking,
slowly (shrank by less than a cm in diameter). Left lung tumor
(the one radiated end of September) also shrinking. Improved condition
in lungs, though still some ground glass in the imaging. Areas of
atelectasis have not improved. Still showing rib destruction on left side.
TILs are going to be held off since there doesn't seem to be any
disease progression.
Been having strange symptoms: rash and dryness on back and face,
fever every night, fatigue, flu-like feeling in chest and shortness of
breath. Dr not sure what it is, possibly the dabrafenib/mek combo, but
even being off it for a week has not improved.
My left shoulder is all messed up and sometimes dislocates. Possibly
from tumor or radiation.
Sharp pain in left rib (can't breathe in all the way).
Dec 2017 - March 01, 2018
Three months of hell.
During a routine visit, they realise I've been bleeding internally and
am anemic, I am immediately hospitalized at Toronto General Hospital
and then moved to Princess Margaret Cancer Centre
for what will turn out to be three months of serious complications (oddly
enough, this is just a month after my last scan, which showed no disease
progression... then all of a sudden all hell broke loose):
Scans show: new extracranial tumor, partly infiltrating my skull; new
tumors in GI track, one is bleeding; more growth in near-spine tumor;
low blood cell count; new tumor near lining of the heart; new bone
metastasis in hip and leg.
Surgery: bowel recession for the bleeding
GI tumor. After a lot of trying, they find the bleed coming from a
tumor in the small intestines. Only that tumor is removed.
Three blood transfusions due to
constantly dropping red blood counts.
Chemotherapy: three rounds Dec - Jan of
chemo in hopes of temporarily managing the new mets..
I require magnesium infusions like twice a week
since my levels keep dropping.
Painkiller dose increase: now up to
30 mg Hydromorphone slow release, three times daily + 12 mg multiple
times a day, as needed for breakthrough pain.
Radiation to extracranial tumor:Luckily
they are able to use very targeted beams and most of my brain is
spared... though a small area was radiated.
Radiation to near-spine tumor at T1-T2: it is
starting to press on nerves and they worry it could reach the spine
itself. I am warned this treatment comes with a ~15% chance of causing paralysis
a year down the line.
I am given a PICC linesince the daily
poking and insertion of IV tubes is starting to cause many collapsed
veins and pain.
Three days after PICC is inserted, during a CT scan the PICC
accidentally gets displaced into my jugular and has to be replaced. Fun
times.
Radiation to ribs: rib mets were starting
to cause damage and pain to ribs.
I weigh 132 lb (I am 6'3).
At this point, something goes wrong with my heart, and it starts beating
at 160 BPM (standing) 140 BPM (resting). Cardiologists are not able
to figure out why, and as of this writing (April) my resting heart rate
is still 120 - 140 BPM. For some reason, Dexamethasone will temporarily
bring it back down to normal range (70 BPM). This new heart condition
causes me a lot of fatigue and disability... not to mention my constant
worry of suddenly dropping dead from a cardiac event.
I spend a full month completely bedridden, unable to walk altogether,
even to go to the bathroom. My heart rate often shoots to 170-180 merely
from standing up. After a month, I am finally able to stand up and walk
a few feet, but for my whole stay I am mostly bedridden. I am unable to
lie on my side due to rib pain... it was truly an indescribably excruciating
experience to lie in the same bed, in the same position, for three
months straight. This is the first time I felt desperate.
I am finally allowed to go home on March 1st. I am still
mostly bedridden but I can't take the hospital anymore.
March 2018
Still doing terrible but man it's good to be home!
Mostly unable to put on weight. Still weigh ~135 lb.
Heart rate still at 120-140 resting.
Extreme pain in shin turns out to be bone metastasis. I am given radiation to the tibia. This renders
me unable to walk for a few weeks again, completely bedridden /
wheelcair.
Still mostly bedridden. Some weeks completely, though here and there I
get bursts of energy and am able to go for a wheelchair stroll.
Odd side effect: I've been shedding massive amounts of dandruff and dry
skin from my scalp, forehead, and face.
I am having excruciating pain in my right hand, often unable to close it
or grip anything.
April 2018
Dr. thinks hand pain could be gout. I am given
colchicine for a few weeks which seems
to help.
Scans show an unexpected mixed response: there is a new liver and lung
met, and seemingly a bone met in the right leg as well, but most other
tumors have shrunk since last scan. Dr. doesn't think this is from
chemo, so could be a delayed response to something else?
Hand pain does not go away and is barely manages by the painkillers...
very frustrating and debilitating. Luckily leg pain has gotten better.
I've been having an increase in back, rib, and hip pain, even though the
scans show no reason for this to be so.
May 2018
Having a liver met means I can start application for a trial for
trial for Nivolumab + LAG-3 antibody.
They do a bunch of tests (liver biopsy
along with bone scan and other tests). However, not getting my pain
under control would disqualify my from trial.
LAG-3 is rescheduled for June because pain keeps getting worse. More
scans show that hand pain is caused my "moth eaten" bones in hand, most
likely melanoma, not gout.
Scans show progressing bones mets in hand, left femural head, right
knee, ribs, and skull.
I am given radiation to hand, right knee,
and left hip (hoping trial will resolve skull met).
I have an episode of extreme pain in right leg (unable to even get out
of stretcher). Luckily a course of steroids fixes it within hours. (However,
washout period for steroids is three weeks for the trial.)
My right hand is completely debilitated and throbs constantly.
Pain is extreme, often excruciating. Opiate painkillers don't work
anymore even at the dose I'm in. Gabapentin helps with some of the pain,
but the side effects interfere with my quality of life. I switch to a
different opiate, which helps a little, but it's still a bandaid
solution.
Will possibly try Methadone or Ketamine therapy to manage pain.
June 2018
I start LAG-3 trial, having my first
infusion.
Near the end of the month, I finally get admitted to the palliative care
unit and start the switch to methadone for pain management.
Sadly, on the last week of the month I have an episode of excruciating
pain and symptom deterioration (almost unable to walk, breathing
problems, etc.). They put me under heavy sedation, symptoms are very
difficult to manage. Scans reveal very rapid disease progression
(metastases in many organs, many bones affected, a broken rib),
including a bleeding metastasis in the liver.
I am given radiation to the liver.
I am pulled off the LAG-3 trial.
Oncologist is now convinced the progression is caused by the PD-1,
and that I
respond paradoxically to this class of drugs and should not be given
them again.
I am given Dabrafenib and Mekinist combo
for a third time. Almost instantly (three days), the tumor on my skull,
then the size of a golf ball, melts away into nothing. My pain also
disappears (and over the next month my painkiller dose is lowered
significantly).
I weigh 118 lb (I'm 6'3).
July 2018
However, my condition is otherwise very deteriorated. I can barely walk
a few feet. I get winded washing my hands at the sink.
Near the end of the month, scans show mixed results. New tumor near
C6-C5 spine since last scanning that area.
I keep getting fevers (around 38c-39c) that last for a week or so.
Unknown whether it's from the cancer treatment, the cancer, or lung
infections which CT scans seem to show. I
temporarily discontinue Dabrafenib/Mek, am put on a course of
antiobiotics, take daily Tylenol.
I weigh 221 lb.
Dabrafenib will only manage the disease for so long, and there are no
further treatments or trials available to me. I choose to apply
for Medically Assisted Dying (application
is approved), an option I plan to use once symptoms start becoming too
debilitating again.
Tomorrow I'm finally being discharged home (me and my girlfriend's
apartment), with some accommodations and home care provided by the
hospital I will hopefully be able to spend some more time at home
without too much distress. Due to lack of elevator, I'll probably not be
able to leave the apartment, but luckily we have a nice balcony
and big windows.
