HSCT Presentation Outline

Review structure of presentation/outline it

o Make sure everyone received the handouts
o Fair warning regarding medical pictures (IV, PICC Line, Vascular Catheter)
Start with Dr. Burts video:
o Dr. Richard K. Burt works at Northwestern Medicine
o Conducting the Phase III Clinical Trial for RRMS
o Also treats other autoimmune diseases (listed on back of overview
handout)
o https://www.youtube.com/watch?v=Iafkr-qRnm0&feature=youtu.be (Start at
1:14 to 14:40 or 13:15)
Basic Overview
o Information on handout is adapted from the Handbook of Patient Education
from Northwestern I can email you a copy of the Handbook and it is also
available on my blog!
o What is HSCT? (same as bone marrow transplant)
o What are stem cells? How are they used? (will go into harvest later)
o Non-myeloablative removes most, but not all, of immune system
o Goal to reboot immune system and help body grow a new immune system
that does not remember that it has MS
Stop progression
Can result in recovery of previous damage (no guarantee), as nervous
system can now work on healing itself
o Possible Side effects/Risks
Severe/Life Threatening infections or complications that could result in
death
Slight chance of later developing lymphoma, leukemia, or bladder
cancer due to the use of Cytoxan, rare due to the low dosage used
Early Menopause/Infertility
ITP (idiopathic thrombocytopenic purpura) drastic drop in platelets,
easily remedied if treated asap
Thyroid problems
Review of my experience
o Initial evaluation
Review way to apply (back of resource sheet)
Must have patience, as it can take them a while to reply/schedule your
appointments
Doesnt hurt to apply! For even more info, check out Facebook page,
numerous files on there, my blog, and many other blogs listed on the
Facebook page following blogs and reviewing information is very
helpful to help make your decision whether or not to pursue this
Make Timelines/Current Symptoms for evaluation (see my
examples, I can email to you as well)
Organize your questions with spaces to write answers from Dr.
Burt
Dr. Burt will offer treatment for patients on a compassionate
basis at times, meaning you do not fit the trial criteria, but he

Start

believes you will benefit from the treatment Do NOT ask for
this!
I applied in May, 2015, evaluation in November of 2015
Evaluation typically consists of appointments with Dr. Burt, Dr.
Balabanov (blind Neurologist in study), MRIs (brain, cervical spine), and
bloodwork

Insurance coverage
Medicare covers all but $2500, consider getting a supplement to
cover the rest
Affordable Care Act states that the insurance company must
cover clinical trials if the doctors/facilities are in network
Health First covered part of my evaluation, but not the
transplant. Switched to Cigna on January 1 st and they covered
Other costs not typically covered:
Flights/Travel
Hotel/Lodging (Northwestern has contracted rates with some
hotels), can also consider long-term apartment rentals
Food
o Consider Fundraising
www.HelpHOPELive.com (Transplant based
fundraising, 501C3, tax-deductible donations)
www.gofundme.com
www.transplants.org - National Foundation for
Transplants (tax-deductible fundraising)
with power point
Pretesting
Hair-Shaving
Mobilization
Transplant
Post-Transplant
Post-Transplant Meds
Lab draws
Improvements
Challenges

Final tips
o Take care of yourself! Eat healthy, be in good shape before transplant to help
your recovery throughout and after
o Focus on mental health prepare yourself for changes (mostly good, but
different) in your life
o Again:
If you would like a copy of the handbook, I can email it to you it is big
and has lots of info in it!
On table:
Timeline/symptoms for evaluation
Copy of my schedule for others to review
Final Lab Work from transplant stay at hospital
Extra blog/HelpHOPELive cards

If you would like to be added to my blog, either subscribe online (address on

resource sheet) or provide me with your email address and I will add you
o Please feel free to call or email me with any questions in the future!
Question and Answer Session
o