A Change is Gonna Come

Teresa started Cycle 6 of Doxorubicin/Olaratumab on Thursday, May 17. She was supposed to have her CT that morning, but a communication error somewhere meant there was no pre-medication. So her CT was rescheduled for EARLY the next morning.

We waited anxiously for the CT results, which came the morning of Tuesday, May 22, in the form of a voicemail.  Progression of tumor. Need to be seen immediately. Need to change to a new chemo and/or get into a clinical trial. Well. That was unnerving!

So we saw Dr. Musgrave today (Wednesday, 5/23) instead of tomorrow. We were very nervous going into it. We did manage to get a printout of the CT report prior to the appointment (at the cancer center). It was … so disorganized and vague. Tech-in-training? The report is read by someone in radiology at Bristol Regional Medical Center, in Bristol, TN, and then sent to the doctor or FNP who ordered it at the Cancer Center.

Dr. Musgrave agreed it was not a good report. (Ex: On March 1, Teresa’s CT mentioned a mass attached to the right side of her liver. This report said it was on the left side…. There was so much of just … bad reporting (or bad reading skills followed by bad reporting skills).

There has been tumor growth on doxorubicin/olaratumab, but compared to the period before she started chemo, and the period she was on gem/tax, it’s pretty minimal. Since her March 1 CT, she’s had approximately 1.5cm of growth on the primary tumor. Leiomyosarcoma is an aggressive, fast-growing tumor, so even though it’s still growth, it’s pretty awesome.

We discussed how there was possibly just too much tumor for the chemo to be truly effective against (and there may be some resistance of the doxorubicin). My visual analogy was, “trying to hunt an elephant with a BB gun”. Dr. Musgrave agreed this was an apt description. (Do please note that I absolutely do not condone shooting elephants with anything!)

In an online group for the LMS Direct Research Foundation, a friend told us that her understanding was that Dana-Farber Cancer Institute, in Boston, Massachusetts, was more aggressive than other big sarcoma centers. I also had that impression from posts I’ve read from other patients, and from medical journals. There is also a lot of innovative sarcoma (and cancer in general) research that comes out of DFCI.

Before I could ask Dr. Musgrave about Teresa going there, she brought it up – mentioning Dr. Suzanne George as an excellent medical oncologist to work with, and that she’d worked with Dr. George on another patient. Dr. Musgrave told me to apply for an appointment, and she’d work on contacting Dr. George to discuss treatment — and discuss expediting an appointment at DFCI!

She told us that the team there is much more likely to be willing to do surgery, which Teresa is definitely up for. We know from Roswell that there is a chance that Teresa would need permanent colostomy and urostomy bags. Teresa says it’s worth it if it means she has a better chance of surviving this.

But, who knows? Maybe DFCI wouldn’t need to remove any, or as many, abdominal organs as Dr. Kane at Roswell said he’d have to remove.

I have applied for an appointment with Teresa, and the site said we should hear from a Patient Coordinator within 24 hours. I let Dr. Musgrave know as soon as I submitted the form.

Dr. Musgrave also told us about a local cardiologist who is changing his practice around to just treat oncology patients. As a reminder, doxorubicin can be very cardiotoxic. T has had 2 cycles of the chemoprotectant Zinecard, but that doesn’t mean she couldn’t still have problems from the doxorubicin….even as far into the future as 10 years (or more) from now.  

A potential next chemo to try is Trabectedin (Yondelis), which can also be cardiotoxic… but there is no chemoprotectant for Trabectedin.  She has her first appointment with Dr. Eduardo Fernandez this Friday morning. Originally the earliest we could get was at the end of June, but Dr. Musgrave talked to their office and said Teresa needed to get in sooner.

Our understanding is that he will follow and monitor Teresa’s treatment from here on out!

Today was labs (bloodwork) and the office visit. Her labs are where we’d expect after Day 1 of this cycle. Because the chemo is helping keep her relatively stable, Teresa will go ahead with Day 8 (olaratumab only) tomorrow afternoon. And get the Neulasta patch to boost her white blood cells. The chemo protocol will not be changed at this time. We will wait and see what happens with DFCI.

Despite the alarming voicemail yesterday, once we actually got to speak with Dr. Musgrave, we felt much better about the whole thing.

This is not great news, but it is way better than we expected, and we are excited about the possibilities that going to DFCI brings.



Colostomy: A surgical operation in which the colon is diverted into an artificial opening in the abdominal wall, bypassing damaged colon. The diverted piece is sutured into place. The artificial opening is called a stoma. A small pouch (bag) is placed over the end of the stoma to collect waste products. (If this is done with the small intestine instead, it is called an ileostomy.)

Urostomy: The same type of procedure, but for the urinary system.

Helpful links:

Dana-Farber Cancer Institute: https://www.dana-farber.org/

DFCI Sarcoma Center: https://www.dana-farber.org/sarcoma-and-bone-cancer-treatment-center/

Trabectedin (Yondelis):     https://www.yondelis.com/patient
(An interesting bit of trivia, Trabectedin is sourced from Colonial Sea Squirts. Yup, you read that right! You can learn more about it here:  https://www.britannica.com/animal/sea-squirt )

Trabectedin is given over a period of 24-hours via IV or central line (she’d get it in her port, presumably) once per each 21-day cycle.

Dr. Musgrave also offered the names of 2 other chemos that Teresa could potentially try, but as I mentioned before, there’s no plans to change anything until DFCI is involved. Those other two chemos are:

Votrient (this comes in a pill, not an IV, and patients take 800mg a day, every day): https://www.us.votrient.com/advanced-soft-tissue-sarcoma/

Halaven (this is an IV, and is taken on Day 1 and Day 8 of each cycle): Do not have a link to share for this yet (just medical journals and clinical trial studies.

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