Pretesting

April 11-13, 2016

Chicago, IL
Testing completed to make sure you are
healthy enough to undergo HSCT.

Pulmonary Function Test

Test to make sure lungs are healthy

Echocardiogram Ultrasound of the heart

Makes sure your heart is healthy Heart issues do not always make you ineligible
for transplant. Sometimes, the protocol used is just changed.

Blood work

Blood work

EKG and Chest X-Ray

Another check of the heart and lungs!

Psychosocial Evaluation
Confirming mental stability to undergo transplant

MRI of Brain and Cervical Spine

Used to establish a baseline, to identify any active
lesions, and for comparison with follow-up MRIs

Meetings with the doctors

Neurosurgeon
Unique in my case

Appointment with
Dr. Burt
Baseline tests (mobility, manual
dexterity, cognitive abilities)
Reviewed and signed consent for the
clinical trial
Met with Dr. Burt
Reviewed MRI
Asked questions
Reviewed risks and confirmed
consent

Appointment with
Dr. Balabanov
(blind neurologist)
Baseline Neurological Evaluation
EDSS (Expanded Disability Status Scale)
Dr. Balabanov does not know which
arm of the trial I am in

Randomization
Scheduled to be randomized on
April 19th
Due to a variety of delays, I was
not randomized by a blind
th
statistician until April 25
Was randomized to the transplant
arm!

Mobilization
Began May 9, 2016
Prentice Womens Hospital
Preparing (mobilizing) the body for the
harvest of your own stem cells

May 9-10 Admission to Prentice Womens Hospital

Met Jessica, my stem cell sister
VRE (Vancomycin-resistant
Enterococcus) swab
IV placed

Medications
1 gram IV steroids on both days
due to active lesion
Saline to hydrate
Mesna to protect the bladder
Lasix to increase urination
Anti-nausea medications
Cytoxan (chemotherapy - one
dose)
Discharged on 2nd day

Granix/Neupogen
Medication used to stimulate
stem cell production and assist
with moving it to your
peripheral blood supply
Prepares for a bountiful
harvest!
Started on Saturday, May 14th,
and gave myself shots daily until
the morning of harvest
Can experience bone pain,
minimal for me

Stem Cell Harvest

May 19, 2016
Rube Walker Blood Center

Vascular Catheter
Vascular Catheter placed into
your internal jugular vein
Local anesthesia

Stem Cell Collection

Predicted stem cell count of
15 million
Machine separates out stem
cells with a centrifuge

Stem cells
are collected!

Machine
warms blood
and puts it
back into
your body

28 Million Stem Cells Collected!

Vascular Catheter Removed

Catheter pulled out

Pressure applied for 10 minutes
Many steri-strips applied!
Gauze and tape placed over
steri-strips

May 26th Hair Shaving Party!

Hair starts falling out approximately
two weeks after first dose of
chemotherapy

Transplant
June 1-17, 2016
Prentice Womens Hospital

June 1st, PICC Line Placement

PICC (peripherally
inserted central
catheter) Line
Placed into a large vein
in your arm, through
the subclavian vein,
and through the
superior vena cava
(ends right near your
heart)
Local anesthesia

June 2nd, Admission for Transplant

Day -5 to Day -1
Negative (-) days pretransplant, Day 0 is
transplant, positive (+)
days post transplant
Foley catheter, VRE swab
Blood drawn routinely to
check numerous values,
but very specifically for
counts of white blood
cells, neutrophils,
platelets, and hemoglobin

Pre-Transplant Conditioning Regimen

Numerous medications given to combat the side effects of other
medications
Mesna (protect bladder), Lasix (protect bladder), Zofran and other antinausea medications, Benadryl, Tylenol, liver protectors, acid reducers

Cytoxan (cyclophosphamide) Chemotherapy

Days -5 to -2
Foley catheter removed on Day -1

1 gram of steroids (methylprednisolone)

Days -5 to -1
Pre-medication for rATG

rATG (rabbit Anti-Thymocyte Immune Globulin)

Days -5 to -1
Weakens the immune system and prepares it for the transplant

June 7th, Day 0 - Transplant Day!

Video

June 7th, Day 0 - Transplant Day!

Benadryl and Tylenol given as pre-medications
Stem cells taste like creamed corn!
Transplant took approximately 30 minutes

Days +1 and +2
Side effects from discontinuation of the high
doses of steroids (fast heartrate, intense
dreams, fluctuating emotions)
Blood transfusion to help with fast heartrate
Became neutropenic on Day +2
neutrophils (part of white blood cells that
are first responders to infection) dropped
below .5
Legs very weak and heavy
IV Antibiotics received every 8 hours until
discharge

Day +3
White blood cells and
neutrophils became too low to
count (Thats good!)
Platelets (blood clotting cells)
dropped too low had 1st of 6
platelet transfusions
Very quick took about 20
minutes
Tylenol and Benadryl given
as pre-medications to
combat any allergic reactions

Days +4 to +9
Had to gown up, glove up, and mask up to leave
my room!
Started Granix shots to boost neutrophil
production on Day +4 and continued until Day +9
Did not have any bone pain from the Granix
5 more platelet transfusions
IV fluids given periodically to help with increased
heartrate and low or orthostatic blood pressure
White blood cells and neutrophils finally started
rising on Day +9
Unfortunately, platelets kept dropping and I had
to wait for them to stabilize

Day +10 Discharge Day!

Platelets dropped
overnight, but started
rising by the afternoon
I was finally told that I
could be discharged!
Packed up belongings
and got ready to go

PICC Line Removal

Very simple procedure
Didnt hurt at all!
Pressure applied for 10
minutes after removal

Video

Ready to go!

Post Transplant
Post transplant medications:
Fluconazole (anti-fungal, 3 months)
Bactrim (anti-biotic, only one week due to
adverse reaction, typically taken for 3
months)
Acyclovir (anti-viral, 1 year, protection
against shingles)
HiBiotin (prescribed by my local neurologist)

Day after PICC Line Removal

Slight bruising
Minimal pain

Post Transplant
Lab Draws:
Weekly for four weeks
Biweekly for 8 more
weeks
Basic labs to check red
and white blood cells,
platelets, liver and
kidney function, and a
variety of other values
Other labs drawn if
needed

Improvements

Slight improvement in the numbness and tingling in my left leg

Cognition better on some days
Energy better on some days
Optometrist confirmed that she was able to correct my left eye
(with nerve damage) better than she has been able to in years
Vision is still blurry and choppy, but seems a bit better
Previously corrected to 20/40
Corrected to 20/25 post transplant
Pain in right eye (most likely caused by a Glaucoma surgery 1.5
years ago) has been gone for over a month (it used to come and go
frequently)

Challenges

A lot of ups and downs

Sweat A LOT!
Hot Flashes
Fluctuations in vision (could be good?)
Stress and anxiety
Inconsistent return of old symptoms (tingling up and down the left side of
my back and face)
Peripheral neuropathy
Happened intensely for approximately 1 week, then mostly subsided
Could be my nervous system try to re-learn its communication?