Even before Teresa started chemo in October, she wanted the rest of the tumor, and her cervix, out.
Before chemo seemed the best opportunity — the tumor was very small. The cervix wasn’t enlarged and was about the same size as the piece of left behind tumor per our understanding, and her labs (CBC and CMP) showed significant improvement over her pre-surgery labs.
But the doctor we saw at Sloan Kettering declined surgery, saying essentially it was small and chemo would take care of it, and so forth.
From things we’ve read online, we now feel a lot of this may have been more so that she would have a “chemo baseline” with the drug regimen that’s supposed to have the best outcome.
If it works.
It didn’t work. And, as you all know, her tumor grew alarmingly fast. It’s at least half of the original size of 30cm.
The gold standard in treatment for LMS cancer is surgery with clean margins. It is treatment-resistant, so your best chance is to get absolutely as much out as possible and then do chemo if there’s any left that surgery cannot get.
Teresa never stopped wanting the second surgery, and when we learned that the chemo didn’t work and the tumor was bigger, something which was extremely obvious, we pushed for surgery again.
Dr. Musgrave got all the information she needed from us to speak with Dr. Abu-Rustum. As a reminder, he is a surgical oncologist, and one of the reasons we picked him is we read a very good article about him performing a very high-risk surgery (I shared a link to it last Fall).
He has declined to perform the surgery, saying it is too high risk and he thinks Teresa should try at least one more chemo regimen, if not two different ones. That will take weeks; especially considering one cycle is often 21 days!
Of course, if he feels it is too high risk, we really don’t want him performing the surgery in the first place!
Monday night, I discovered he’s not a sarcoma surgeon. I happened across the page of MSKCC sarcoma surgeons and he is not listed. He has vast experience with gynecological cancers, but he is not a sarcoma surgeon.
Dr. Musgrave advised that we see if we can find another doctor at MSKCC, who is a sarcoma specialist and oncology surgeon, to perform the operation instead. In the meantime, she will set everything in motion for T to start a new chemo regimen (doxorubicin/olaratumab) to make sure Teresa’s insurance will cover everything.
So, next Tuesday, she is scheduled to have another echo and another ultrasound.
On Wednesday, she’ll have her regular labs drawn, and we’ll have chemo education on the new medicines. If the plan goes through insurance, she may start chemo as early as next Wednesday — which would likely put a snag into the surgery plan. (You really want your fast growing cells for healing to be operational if you’re going to have surgery!)
So, I’m going to get back in touch with our patient adviser at MSKCC. But I’m also going to see about an appointment at Roswell Park, in Buffalo, NY, providing they’re familiar with leiomyosarcoma specifically. And I’ll be asking people in the leiomyosarcoma group I am in to recommend surgical oncologists with experience specifically with the uterine variety of LMS.
(We just wish this wouldn’t mean a potential long drive in winter to NY!)
Dr. Musgrave said Teresa’s lungs sound pretty clear, which is awesome.
What’s not awesome is Teresa has been having a fair bit of abdominal pain. We have no way to know if it’s the tumor, pulled muscles – since she’s lost a lot of muscle tone – or a combination thereof. Dr. Musgrave said any of that is possible. So now Teresa has started palliative care for pain management (she’ll officially see the Palliative care person on January 23, but in the meantime, she has medicine to take to help with the pain, and it’s already made a wonderful difference).
Last week, Teresa’s hemoglobin was above the critically low range for the first time since November 21! It’s still low (8.9) but she didn’t need a blood transfusion. This week, it was still 8.9. Her RBC is coming up slowly but steadily too, and her kidney function (eGFR), which should be between 90 and 120, is nearly back to normal, coming in this week at 88!
Sorry for taking so long to share any new information, but up until this week, we just had little bits and pieces. I really wanted to have a more comprehensive picture to share with you before I posted.
Please let me know if you have any questions.