Discharge Instructions After I.E. Chemo

Mathew’s discharge was such a relief, but then in other ways, there were additional, unexpected stressors. One of them was the medications. In this post, I want to share the information we were given at discharge, an important caregiver tip about transporting medications, and the medication list for Mathew.

We went home with a lot of information and medical supplies. It was overwhelming but I didn’t have the luxury of taking any time to rest physically, mentally or emotionally. Mathew's care was constant.

From Moffitt, we were given a list of printouts.

1. One page with the number for the Sarcoma Clinic, the names and numbers of Dr. Reed, the Inpatient Social Worker, The RN Case Manager and the Home Health agency with instructions on Activity: As tolerated and Diet: Immunosuppressed (This is deserving of a stand-alone blog post).
2. Risk of Infection information, when to start Neupogen injections, the promise of more appointments to be scheduled, and when Mathew’s port will be placed (and PICC removed), and that home health will train us on care of Mathew’s PleurX Cath (lung drain).
3. Instructions to call Sarcoma Clinic anytime if temp is 100.5 or higher or there is a change in mental status.

Then there were the handouts:

1. Instructions for Biliary Catheter Care and when to call the doctor if problems.
2. PICC information, it will be flushed by the Home Heath Nurse.
3. Subcutaneous Self-Injection Guide for the Neupogen Shots.
4. An Appointment Itinerary.
5. A list of medical equipment, such as the walker he took home.
6. The Medical Supply company sent a box of supplies with a list.

And several pharmacy bags of medicine. 16 prescriptions to be exact.

IMPORTANT CAREGIVER TIP*** Especially #3

One of the tips we were given was to get extra prescription bottles so that when you are out of the house or going to appointments you have the medicine you need without taking all of your pills with you. There are several reasons for this:

1. Even if you have put your pills in a pill organizer, you need to have the prescriptions with you for legal reasons.
2. You don’t want to have your entire supply of medications with you in case they get lost or sadly enough, stolen.
3. In addition to PRN pain meds, I kept enough scheduled medications with us for the time we expected to be at appointments plus another day’s worth. This was important a few times when Mathew was moved from outpatient to inpatient for various reasons or he was admitted with fevers. Several times his pain meds were scheduled before the orders were filled by the pharmacy. The few times this happened I gave Mathew his scheduled pain pill and let the nurse know. I suspect this isn’t protocol but I wasn’t going to let him get behind on his pain meds.

So, for the list of medications:

First the temporary meds

Dexamethasone  4 mg-2x a day for 3 days after each chemo cycle

Rifaximin  200 mg tablet 3 x a day for 7 days

Neupogen 300 mL injections, 1 daily for 6 days after 5 days IE chemo

Daily Meds

Ursodiol 300 mg 2 a day (this is to keep Mat’s bile thin, this is a very important medicine for him).

Phytonadione 5 mg tablet 2 tabs daily

Thiamine 100 mg daily

Protonix 40 mg 1 tab daily

Morphine 15 mg tablet extended release - 3 tablets every 8 hours

furosemide 20 mg tablet daily

Cholestyramine powder reconstituted 4 times daily this is a bile acid-binding resin. It works by removing bile acid from the body.

Miralax to keep his bowel movements regular (this is a big problem between the tumor and the medications). 

Magic Mouthwash as needed for mouth pain/Mucositis

As Needed Meds PRN

Hydroxyzine 10 mg tablet, 4 times a day as needed for itching. (Because of the bile)

Oxycodone 15 mg tablet every 4 hours as needed for pain

Compazine 10 mg tablet every 6 hours as needed for nausea

Zofran 8 mg tablet every 8 hours as needed for nausea

I haven’t done it yet, but it will be interesting to see how this list changed at the end, the amount of medication needed to keep Mathew in any sort of comfort.

Some background on my family’s experience with regard to prescriptions. Other then prescriptions for allergies and asthma (for Joseph), we did not have a very interesting medicine cabinet at home. To suddenly have so many prescriptions, all with different schedules and durations, was a challenge for me. That first night at my sisters, or home, I know I spent probably two hours figuring out a spreadsheet for keeping track of the doses.

There were quite a few built-in bookshelves in Mathew’s living room and at first, I would put the bottles on one side of the shelf and move them to the other side as they were used that day. My methods would evolve and eventually I could go home with a new list of medications and sort them out with no problem.

I never did find a pill organizer that would work for us. A seven-day pill organizer eventually became what I would use for 1 days worth of scheduled medications. I kept a small notebook for writing down when PRN meds were taken. Eventually, we just treated them as scheduled meds.