The Week of Yondelis

The first week of July was a busy one for us!

Here is how our schedule went:

Monday, July 2: Received call from Dr. Musgrave’s NP in Norton, VA, that a baseline CT could be set-up for Teresa, and that someone from Bristol would be calling us to set-up a time. Also, that her pre-meds had been called in. (Prednisone, taken at 13 hours, 7 hours, and 1 hour pre-CT, plus OTC* Benadryl and hour before.)

Next, Laura called from the Cancer Center, to give us the time of T’s CT – at Volunteer Parkway. I thought this was odd because we were told it had to be at the hospital from now on, but I thought maybe since the premeds are handled by us, it was okay. The CT was scheduled for 10:45am, and the Parkway location is further into TN than the hospital is.

Also, there was no way we could go down Tuesday morning and get the Prednisone in time, so I had the prescription transferred to a CVS in Roanoke. Then we had dinner and got packed up, and she had her first dose, and we left close to midnight.

Tuesday, July 3: Early this morning, Imaging Center on Volunteer Parkway calls to tell us they’ve moved her to the hospital for 11am. Even though T took her pre-meds herself, when a patient is pre-medicated, there must be a radiologist on hand, and the Imaging Center didn’t have one on hand. 

Luckily, they got hold of us before we drove all the way down! 

So, now we’re at the hospital for her CT. We wait for maybe 10 minutes, but she goes back relatively quickly. T had been having a LOT of trouble breathing. She’d been very winded. I had listened to her breathing and her breath sounds on her right side were decreased to the point of being absent. It also felt like her left lung was being crushed if she tried to sleep on her left side. She couldn’t get up 1 flight of stairs without wheezing.

We suspected she needed another thoracentesis done, at least on the right side. (Her breathing on her left sounded deep, and loud, but in December, she had to have one done on each side.)

Teresa talked to the nurse during the CT and told her how hard it was to breathe. The nurse said she’d have a radiologist look at the scans right away. 1 – 1 1/2 hours later (it was very fast), they had everything arranged through Dr. Musgrave for T to have a thoracentesis. It was all done shortly after 1pm.

They drew 3 liters off** of her right lung. Or, for visual which has helped several people we’ve described this to, approximately 8.5 12oz cans of soda.  

They couldn’t get all of it, because she started coughing too much, but the radiologist who came to talk to us said they really got almost everything. He also showed us with his fingers about how much lung she had available before — a measurement about 2 inches long and 1 inch high!

A sample of the fluid was sent to pathology to see if there were any malignant cells in it. We’re still waiting to hear. (I think the mid-week holiday threw everything off.)

Wednesday, July 4: This was a relaxing day for us since the cancer center was closed.

Thursday, July 5: 

  • Labs: 8am
  • Office Visit with Dr. Musgrave: 8:40am
  • Chemotherapy: 9:15am

Of course, things rarely run on time. Labs are often slow to go out to the doctor, even though they do them in-house. And since it was the day after a holiday, they were very busy (many extra patients who had to move from Wednesday to Thursday). 

But eventually everything got started. Chemo Education for the new chemo was done at the infusion chair. I already knew everything they told us about the chemo, thanks to the ChemoCare site and the Yondelis site which offers a video to watch about how 24-hour outpatient chemo works. You can watch a virtual infusion here.

Thanks to my parents, we stayed in the Fairfield Inn across from the hospital on Thursday & Friday nights. This way, we were only minutes away if Teresa developed an infusion reaction (which thankfully didn’t happen).

Early Thursday evening, our friend, and T’s PCP (and my Abingdon-area PCP), Sally Blackburn, came by our room to see us. It was really great to see her! She’s truly one of the kindest people you would ever meet!

Friday, July 6:

At 10:30am, we had an appointment with one of the Palliative Care NPs. We talked to her about T’s pain, got new prescriptions, and asked about any exercises she can do which won’t do more harm than good.

She’d been scheduled to have her Yondelis pump removed at 11:30, but the infusion hadn’t started until around 12:30p the day before, so it was still running. We left to get something to eat. When the pump beeped to let us know it was finished, we headed back.

I’m including photos on this post so you can see what the infusion bag, pump, and chemo look like. Not pictured are the bio-hazard waste bag and the instructions they send you home with on how to clean up properly if there is a chemo spill. We’re both very relieved we didn’t need them!

But when we went back, we found out that the Neulasta approval had expired in June, so they were waiting on a new approval. It still hadn’t come through by the time the chemo was undone, so we went to do errands.  We were working with Nurse Tonya, and she estimated 3p, but I left her our cell number in case it was earlier. 

About 10 minutes into my walking around Food City (grocery store), she called to say it had come in, so we headed back and got the Neulasta patch applied!

It was a very busy week! We stayed one more night just to be safe (and to avoid having to drive back up 81 to Roanoke in several nasty thunderstorms). Then left Saturday, early enough so that Teresa would be resting comfortably on the couch, or in bed, when the Neulasta patch started dispensing.

So far, she has had mild nausea from this chemo, and for several more days than she’d had nausea in the past. She’s taking Zofran, which is helping.

In addition to waiting to hear about the results of the pleural fluid, I asked Dr. Musgrave this morning about getting Teresa scheduled for a paracentesis. We had discussed the possibility with her on Thursday. She has an appointment the morning of Friday the 13th. Dr. Musgrave’s nurse in Bristol, Cathy, called to let me know the date/time of it just a few minutes ago. She said T should have a similar recovery time to this as she did the thoracentesis.

This procedure is similar to a thoracentesis, except it would remove fluid from her abdomen. This should help alleviate a fair bit of pain and pressure, and hopefully reduce the size and distension of her abdomen. We hope that this will also help reduce her back pain. Dr. Musgrave says it should.

If you’re so inclined, you can watch a paracentesis performed here, if you want to know what it involves. It is done outpatient.


*OTC -> Over The Counter / Non-Prescription

**As a reminder, the pleural effusion is in the pleura which surrounds the lung and lines your chest wall; the fluid is not IN the lung.

YONDELIS® (trabectedin) is indicated for the treatment of patients with unresectable or metastatic liposarcoma or leiomyosarcoma who received a prior anthracycline-containing regimen. (Doxorubicin is an anthracycline.)

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