NOTE: I had a PICC line inserted (in my groin for 1st treatment but in my arm for 2nd-6th treatments) so all the medications administered into veins were given to me through my PICC line. They put a splitter on my PICC line so they were also able to use it to draw blood which was great.

PREDNISONE

• Administered as pill, every 12 hours during the first 5/6 days of each cycle

• Could feel the effects

  • It has a stimulating effect, making it really hard to sleep if you take it at night so they would give me Melatonin (pill) and/or Lorazepam/Ativan (pill) to help me sleep in those situations

RITUXIMAB

• Administered into vein, bag 1 of 5 in each cycle

• 1st time

  • Slow administration in case of allergic reaction (standard procedure)

  • Given Benadryl (into vein) because I developed itchy throat and rash on my scalp

• 2nd-6th time

  • Pre-medicated with Benadryl (pill form)

  • Quick administration because they knew they could do it safely

• Every time

  • Nurse in the room with me in the beginning then checking in on me frequently (standard procedure)

  • I would get a bit swollen (nurse gave me a surgical bra to help alleviate discomfort from my breasts becoming becoming heavier, the rest of my body was a little noticeable but not uncomfortable)

ETOPOSIDE, VINCRISTINE, DOXORUBICIN

• Administered into vein, bags 2,3,4 of 5 in each cycle

• Three bags per treatment cycle, one after another

• These three medications were mixed together in one bag (light pink/orange color liquid, covered in brown bag because light sensitive) and each bag took about 24 hours

• Can take longer than 24 hours per bag if it is overfilled or if air bubbles form and treatment gets paused to fix it

• Could feel the effects

  • Some nausea

    • They pre-treated me with Zofran (into vein) before each bag and if I still felt some nausea they would give me pills as needed and it was always enough for me to feel fine

    • At home I had anti-nausea pills I could take as needed (Zofran and Compazine) and it was always enough for me to feel fine

  • Fatigue

    • Effect would get stronger as these medications built up in my system but then would decrease and I would feel more energy again a few days before the next cycle started

  • Thrush

    • Like the fatigue, this would get worse during each treatment but get better before the next one and then worse again, etc.

    • After a couple rough experiences where the thrush built up a lot in my mouth, my doctors and I developed a strict routine to prevent it from getting too bad – I bought lots of disposable soft-bristle tooth brushes and tongue scrapers and never re-used them, I rinsed with Chlorhexidine and used Nystatin and Magic Mouthwash as often as was allowed. Later they gave me a Fluconazole (anti-fungal pill) that replaced some of these.

  • Neuropathy in my fingers (my fingers felt tingly/raw/numb)

    • This did NOT go away between treatments and built up a little more each time

    • Later on in my treatment it became hard to write but I was able to do everything I needed to (for example, my main doctor told me to let them know if I could not use my zippers anymore but that never happened)

    • It completely reversed by 6 months after I finished chemotherapy

Cyclophosphamide, bag 5 of 5 in each cycle

• Administered into vein

• Takes less than an hour

• Given after Etoposide/Vincristine/Doxorubicin combination bag

• Could feel the effects

  • Body was tingly and head spun a bit but not uncomfortable or impaired

NOTE: This injection is used to boost neutrophil (white blood cells that fight infection) counts in the body.

• Injection into arm or abdomen, 24-72 hours after end of Cyclophosphamide bag each cycle

• It is given preventatively in an effort to keep the neutrophil levels from crashing (it worked for me at levels 1-3 but at level 4 (cycles 4, 5, & 6) I became neutrophenic anyway and was hospitalized with a neutropenic fever until my levels recovered)

• Could feel the effects

  • I would get a fever and intense body pain feeling like it was coming from inside my bones so I would have to take fever reducer (e.g. Ibuprofen/Acetaminophen/Naproxen, pill form for a few days after the injection but make sure to stop after that so they didn’t mask a neutropenic fever (see below)), strong pain medicine (e.g. Oxycodone, pill form for about a week after the injection), and anti-histamine (e.g. Loratadine, pill form every day)

  • NOTE: the first time this happened they thought I had an infection until an experienced doctor was able to identify what was going on (they said only about 25% of people react this way to the injection so medical teams are not always looking for it)

NOTE: this is not required but we wanted to do everything we could to protect my reproductive system (it is not known how much this helps but it doesn’t hurt).

• Lupron – injection either every month or every three months (depending on dosage)

• Letrozole – took as pill for 10 days after administration of first Lupron injection (to reduce flare effect on estradiol)

• Norethindrone – took as pill every day during ovarian suppression (to reduce vaginal bleeding and hot flashes, and for bone health)

• IUD – I have had one and was able to leave it in during treatment

MENTIONED ABOVE: Benadryl, Zofran, Compazine, Melatonin, Lorazepam, Ibuprofen/Acetaminophen/Naproxen, Oxycodone, Loratadine, Chlorhexidine Rinse, Fluconazole, Nystatin, Magic Mouthwash

• I got a blood thinner shot once early on to help with circulation while my SVC Syndrome was the worst.

• Anti-ulcer (Pantoprazole) – taken as pill regularly throughout my entire treatment to protect from the possibility of getting ulcers from the steroid.

• Hibiclens – special type of soap recommended to me by a doctor to help reduce irritation from hair follicles dying.

• Stool Softener (Senna with Docusate) – taken as pill regularly throughout my entire treatment but would take more during times I was also taking Oxycodone.

• Icy/Hot – cream that was applied as needed if my body was sore. I would also increase my activity if I felt body stiffness, not just rely on the cream.

• Mouth Sores

  • During “mouth sore week”, it was very painful to eat/drink so I relied heavily on Ensure (high protein) and Pedialyte (advanced) – of course there are other brands you can use as well, the goal is to get nutrients/electrolytes/staying hydrated.

  • The doctors provided me with Viscous Lidocaine which would numb the inside of my mouth for a short time and I would use it prior to my meals.

  • I would take Oxycodone during this time as well, to help reduce the pain from the mouth sores.

Sometimes my body would become deficient in some vitamin or mineral and the hospital would give me supplements. In general, this was not a negative experience, whether it was pill form or into the vein. The exception to this was Potassium administered through the vein. This was excruciatingly painful for me. They gave me pain medicine and thinned the Potassium out with saline for me to be able to get through the administration.