HSCT Stem Cell Transplant for M.S.

Marc Coppins - Chicago

Chicago Tips

**Disclaimer: This information was compiled during and after our trip to Chicago and is only my personal opinion based on our experience. Please verify the information given as it may be incomplete, out of date or inaccurate for a number of reasons. My goal is to help others during the HSCT Trial with helpful tips that I wish we’d known before arriving in Chicago.

FREE or discounted housing:

If you haven’t already, once you are approved for the study, talk to Kim Bracy and ask her to put you on the “Patient First” waiting list for the Worcester House (owned by NWMH). As I understand it, there are only two rooms held aside for this purpose. The waiting list if usually very long. We were told we were so far down the waiting list that we’d never get it, so we made other arrangements, also thru Kim Bracy, at the Seneca, where she was able to get us a discounted rate of approximately $100 per nite + tax. [Note: The Seneca has since been converted into apartments and is no longer available. 10/12/12] So, we were really shocked when we got the call a week prior to our official “report for pre-testing” date that was scheduled. So, we threw things in boxes and rushed there to claim our free room.

IF you get it, it’s FREE housing for the entire length of the study. However, if your name comes up, they will notify you and you must be able to be there and check-in within 24 hours or they’ll give it to the next person on the waiting list. Also, once you get the free housing, you cannot leave the room empty for more than 24 hours (like to go home for the weekend) or you will forfeit the free room. Those are the two stipulations.

The Worcester House is not a fancy place, but it’s sufficient. It is only 1 block from Prentice Women’s Hospital, which is where the inpatient part of the study is done. So, if you have a family member with you for support, which they highly recommend, they will only be a block away. It is about 4-5 blocks away from Feinberg & Galter Pavilions, where most of the other appointments are.

If you are lucky enough to get a room at the Worcester House, you’ll want to .    There are about 28 videos on our , about the entire stem cell transplant procedure, but one of them is specifically about the Worcester House.

FYI, there is no wifi at the Worcester House. We had to make our cell phones wifi hot spots in order to get internet access in our room. The hospital and most of the doctor’s and other outpatient facilities have wifi available.

The “Patient First” rooms are only for the 2-3 month period starting with the pre-testing and going thru you discharge from the hospital. For other shorter appointments, like to see if you qualify for the study and follow up visits, you may still be able to get a room at the Worcester House for $75 per nite. That’s definitely the cheapest room in the area, within walking distance. If not, ask if there are any grants that may help with housing.

Worcester House (Pronounced Wooster)
244 E. Pearson St.
Chicago IL 60611
Hotel Front Desk: 312-926-2334 (Call Kim Bracy to make arrangements, NOT the front desk).

Ken is the main person at the front desk and will be your main contact there. Erica works in the evenings and is also very knowledgeable.

If you get a room at the Worcester House, please contact me before going and I’ll give you all the tips and info I can. One of the most important ones is, there is a kitchenette with stove/oven, refrigerator, microwave, sink & lots of cupboards, but the cupboards are empty. You have to bring your own pots & pans, dishes, silverware, kitchen towels, dish soap, etc. OR, you can opt to eat out all the time, which can get expensive very fast. It will be much cheaper if you plan ahead and pack things from home or buy things at home and bring them with you. Just buying paper plates, plastic ware, etc. can add up quickly. Also, bring boxed and canned foods from home to save money. You can also have things shipped directly to the Worcester House, but make sure you get specific instructions about how to address them.

We also had our mail forwarded to the Worcester House, which in hind-sight, might have been a mistake. Mail was very slow and the weekend front desk staff did not always give us our mail. Several items were lost for 1-2 months. Eventually, we did receive everything, but just be careful. Tell everyone do NOT send CASH in their cards. Gift cards work so much better.

Oh, one more thing, ask me about doing laundry at the Worcester House and what to do and NOT to do BEFORE you go. It was a nightmare because I had to learn the hard and expensive way. I’ll share my experience with you and save you the aggravation.

Transportation:

Don’t drive to Chicago, because then you’ll have to worry about parking. There is a lot of walking, so if you can’t handle at least 5-8 blocks of walking, one way, bring a wheelchair. Put your pride aside because you will probably need it. Otherwise, taxi’s are everywhere and relatively inexpensive compared to parking. There are also city buses everywhere. We didn’t ride them, but it’s another option. Another option to get TO Chicago is the train. From the train station, take either a bus or taxi to your room.

Free Handicap Parking:

If you do choose to drive to Chicago, the Worcester House has a parking garage that is a block away. They’ll give you a discount ticket so it’ll cost approximately $11 per day (most parking is $30-50/day).  After we had spent several hundred dollars on parking, we discovered a way to get FREE parking right in front of the Worcester House, or anywhere else where there is street parking.

If you have a handicap placard or plate and you can FIND parking on the street in front of the hotel, opposite side of street, it's FREE! Otherwise, the parking garage is a block away. DO NOT PARK directly in front of hotel (on same side of road) or bus stops, etc. You WILL get a ticket!! We got a $100 ticket, but were able to get it waived by disputing it and going to court. The ticket was for parking in a bus stop (which is directly in the front of the hotel front entrance. We were there for less than 5 minutes to check in and unload bags, so we wouldn’t have to carry them an entire block from the parking garage. It only took 5 minutes to get the ticket! They are ticket crazy there, so make sure you read all the signs very thoroughly before parking.  There are some exceptions to the street parking. Normally, for street parking, you park and buy a parking pass (I believe its $2-3 per hour) at the meter in the center of the street. Valid parking is usually ONLY between the signs that say PARK HERE. Most streets also have a time for street sweeping or snow removal. Look for those signs and OBEY them to the letter. If street cleaning starts at 9 am, you’d better move your car before then, cuz you WILL get a ticket at 9:01, no joke! As I remember, Chicago Ave., the street Prentice Women’s Hospital is on, does not have street cleaning, so you should be able to park there daily between the Park Here signs. My advice, is to drive or walk the entire block and read all the signs very carefully before parking anywhere to avoid a ticket. Better yet, if you can find a “meter maid” on the street in question, ask them specific questions or at least contact the parking authority office. Do not take the word of hotel staff or others who are parking. If you get a ticket, they won’t care that someone else told you it was okay to park there.

The hospital and doctor’s offices also have parking garages and you can get your ticket validated. Ask Kim Bracy about that. We never used it, but I know it’s cheaper than most other parking.

Standard Parking Garage (This is Worcester House parking, 1 block north)
274 E. Chestnut St.
Chicago, IL 60611

Groceries & Eating:

Looking for a cheaper place to eat or buy groceries? Ask us. There are no cheap groceries in Chicago, but the cheapest we found was a Market inside the Playboy Building. There is also a Walgreen’s inside the same building. There are Walgreen’s all over the place, and it’s the best place to buy toiletries, souvenirs, etc. A gallon of milk at most places cost $4-6. The cheapest place I found milk is at 7-11, near the McDonald’s a couple blocks from Feinberg. There is a McDonald’s a couple blocks from Feinberg. Au bon Pain inside Feinberg/Galter 2nd floor next to cafeteria is great, especially for coffee & breakfast. Downtown Dogs is a fabulous hot dog joint downtown.
It will be much cheaper if you plan ahead and pack things from home or buy things at home and bring them with you. Just buying paper plates, plastic ware, etc. can add up quickly. Also, bring boxed and canned foods from home to save money.
Oh, and the Prentice hospital inpatient food is very good!

Co-Pay Assistance for Neupogen:

Here’s a list of agencies that I’ve contacted for assistance. Our immediate need was for the $1900 copay for the Neupogen shots so that’s what I asked about. Some of the agencies have other funds to help in other areas, but I didn’t really get into that. You’ll have to get websites and ask what other services are offered. I know there’s at least one that said they have a fund to help pay insurance premiums and another helps with equipment like walker, wheelchair, bath chair, diapers, etc. Just ask lots of questions. Most of the agencies have a certain dollar amount limit each month, so if they say they don’t have the funds, you should ask if they will the following month and when you should contact them again. So the best time to contact these agencies is AT THE BEGINNING OF THE MONTH BEFORE THEY RUN OUT OF MONEY!!!

My personal opinion is you shouldn’t bother working on the Neupogen copay until being “approved” for the study. You should try to see if any of these agencies will help pay for the OTHER expenses like the actual COST of the study, travel expenses, food, living expenses, lodging, insurance premiums… I estimated at least $15,000 of additional expenses above and beyond what our insurance agreed to pay (Medicare plus Blue/BCBS of Michigan). Some of the agencies have a “look back” period of 90 days where they’ll reimburse you for the previous 90 days if you’re approved, but MOST of them you have to get approved FIRST and then they’ll pay the bill directly.

Copay assistance for Neupogen Injections– Chemo induced Neutropenia (CIN) or Chemo induced Anemia (CIA) is the diagnosis, not Multiple Sclerosis.

  1. Patient Advocate Foundation (PAF) 800-532-5274. You’ll have to complete a brief application and then they’ll assign you a case worker who will call you. They don’t have a fund per se, but they have connections to various other funds and can help connect you with the right people. The PAF also has people who can assist if your insurance denies the pre-approval and also after the treatment if bills are not being paid as they should be.
  2. Health Well Foundation are the ones who approved us for $2500 Rx copay assistance (for the Dx. Chemo induced Neutropenia only). 800-675-8416. You will have to submit the 1st 2 pages of your 2010 1040 and the Dr. (or Kate or Kim Yaung) will have to complete a form. Open M-F 9-5 est. It took about 1.5 to 2 weeks to get approved. Besides Neupogen copay assistance, they also do funds for Medical Insurance Premiums. But, you can only be approved for one or the other. Looking back on it, it would have helped us out more financially to do the premium assistance. Also, if you can find a different agency assist with Neupogen copay, then maybe you could still have both.
  3. Caring Voice Coalition 888-267-1440
  4. Diplomat Copay Assistance – Paula handles Neupogen. 877-977-9118
  5. Michigan Chapter of MS Society in Southfield 248-350-0020. I spoke with Catherine. They can assist with home durable medical equipment, cooling devices, med trans port, incontinence supplies, speech therapy, lifeline, and more, but I don’t think they help with copays. Not sure if they have other assistance or not.
  6. NORD 800-634-7207 I believe they assist with premiums. Can’t remember about copays, etc.
  7. Copay Relief Program 866-512-3861 (Dx. CIN/CIA)
  8. Diplomat Copay Assist Navigation Program 877-977-9118 located in Flint, MI
  9. The Bone Marrow Foundation 212-838-3029 email: This email address is being protected from spambots. You need JavaScript enabled to view it.

NOTE: (from April 2011 in the midst of Marc’s treatment to another person considering the treatment.) I’m sorry I don’t have more complete info on all of these. You have to understand the circumstances in which I got this information. I had contacted the Patient Advocate agency and did a brief intake over the phone on Friday. I was at home, getting ready to come to Chicago. Marc was in Chicago. I was supposed to leave 1st thing Monday morning, but got an “emergency” call from a customer that took the entire morning to resolve. So, I was running way behind and was very frustrated cuz Marc normally handles this particular area for our customers so I really didn’t know what I was doing. So, I had to stop at bank to deposit checks and would be on my way to Chicago… But, my phone rang before I left the bank parking lot. It was Shauna from Patient Advocate. She was super nice and went waayyy out of her way to help me. Anyway, she kept me on the phone and did three way calls with at least 10 different agencies, but the end result was that they all said no. I was so frustrated and overwhelmed and all I did during the entire conversation was cry and be negative (hopeless feeling). She knew I was having a rough day and really, really tried to help. We were on the phone for at least 2 hours!! Meanwhile, I’m still home in the bank parking lot… I had bought groceries to take to Chicago cuz things are so expensive and so I had frozen stuff in the car and it was melting…. Are you getting the picture of total frustration? I thought I was going to have a nervous breakdown. Thank God my cell phone battery didn’t die in the process. Anyway, I had one sheet of paper and I was scribbling notes in all the margins…you can barely read any of it. That’s where I’m getting all this info from. The end result from that entire frustrating day was I didn’t get any approvals because no one told me the correct diagnosis!!!! How was I supposed to know it wasn’t MS! Later on, Kim Yaung or Bracy told me and I eventually got approved. So, don’t forget the diagnosis if you’re looking to get approved for Neupogen copay.

You should also talk to all three ladies at Dr. Burt’s office and see if they have any other agencies. Feel free to tell all of them that you’ve been speaking with Barb & Marc Coppins. We told them we’d be sending people their way. Here are their names. I have phone numbers and email addresses, but did not feel comfortable posting them online. Please contact me directly to get more info.

Dr. Burt's Office main # 312-908-0059
Kim Bracy, Secretary
Kate Quigley Nurse
Kim Yaung Nurse

Once you have been accepted into the study, I recommend sending emails to all 3 ladies instead of calling. I believe Kate and Kim Y. work part-time. They seem to respond quicker and that way if someone is not in that day, you should still get a response.

Miscellaneous Info:

Get to Chicago early, the day before if possible, and rest. There is lots of walking. You don’t want to arrive the same day as your 1st appointment. You’ll need time to relax after your trip.

What is a stem cell?
A stem cell is essentially a “blank” cell, capable of becoming another more differentiated cell type in the body, such as a skin cell, a muscle cell or a nerve cell. Microscopic in size, stem cells are big news in medical circles because they can be used to replace or even heal damaged tissues and cells in the body. They can serve as a built-in repair system for the human body, replenishing other cells as long as a person is still alive.

Neupogen – easy shot, if given slow, to avoid stinging. But be prepared on day 3. Bone pain is bad! 2 Tylenol worked for Marc. Take it before each shot. Prescription pain meds, Ultram/Tramadol, didn’t work for Marc.

Copay assistance – Chemo induced Neutropenia is diagnosis.

Neutropenia, from Latin prefix neutro- (neither, for neutral staining) and Greek suffix -pe??a (deficiency), is a hematological disorder characterized by an abnormally low number of neutrophils, the most important type of white blood cell. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).

Things to bring:
Extension cords and/or power strips for room & hospital (especially for cell phone or laptop to plug in)
Phone extension cord if you plan on using Worcester House phone (in kitchen) to reach table or bed
Pots & Pans & lids
Dishes or paper plates (We had two plates & two bowls and kept washing them)
Kitchen towels
Silverware & utensils (We had two sets and kept washing them)
Paper Towel
Dish Soap
Band aids
Music
Spices
Laundry soap
Wheelchair/walker/cane even if you don’t normally use it. There’s a lot of walking & you’ll wish you did!
Small toiletries (shower cap, soap, shampoo & conditioner supplied at Worchester House, but you may want to bring your own.)
Bathroom towels and bedding is provided and is sufficient, unless you prefer your own pillow or blanket.
Games
Fan (Worcester House A/C went out while we were there)
Jacket or sweater, even in summer, for cooler days. It’s very windy 1 block off Lake Michigan!
Phone numbers and address book
Back Pack! Everyone walks everywhere! Carrying a shoulder bag gets old fast. Wish I had a back pack.
Luggage with wheels or anything with wheels. If you walk to get groceries or from appointment to appointment, you’ll need somewhere to carry everything.
Coffee Pot (unless you want to walk 1 block from Worcester House to get coffee)
Toaster/Blender?
All meds, including things you may need like Tylenol, Pepto, Tums, Chap stick,
GPS or map (Tall buildings sometimes block GPS signal, so know where you’re going)
There is a running track across the road from Worcester House
There is a biking/jogging area all along Lake Michigan, 1 block away from Worcester House
There is also a sand/cement beach about 6 blocks north of the Worcester House

CONTACT ME:

Please feel free to contact me if you have questions. I’m sure there’s a lot more that I’ve forgotten that I can share with you.

Contact Barb via email, text or phone

Friend Barb on Facebook

Join our Facebook Group - Marc Coppins' Stem Cell Treatment 2011: Many other who have gone or are going through the same treatment are members of the group and can answer questions and give you support. of each step of the study: If you are approved for the study, you will want to watch all of the videos so that you will know exactly what to expect. It will help take the "fear of the unknown" factor away.

Contact Marc via email, text or phone

Friend Marc on Facebook

We have tons of info on our links page.

Visit Dr. Burt’s official website

Please share these links so others can learn about the study!!

Also, please keep us updated on FaceBook so we can pray for you. We are interested in your progress! Eventually, if you get more tips to add, please when you get a chance send it to me so I can have a more complete list. I’d like to post it on the website and FaceBook page to help others in our situation.

Barb Coppins, revised 07/26/11

(If you find any errors on this entire website, please contact Barb so that I can make the corrections. Thank you!

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