The anatomy of grace
I had my first appointment with the medical oncologist yesterday, on Rare Disease Day. Leiomyosarcoma (LMS) is a rare disease — and the retroperitoneal type (RPS) which I have makes up 0.2% of all cancers. Rare diseases are tough because there’s such a small market that there’s no economic incentive for companies to invest in research. So to some extent solutions are reliant upon the goodness of others, and ideas more abstract than return on investment.
I’ve been thinking a lot about that, because experiencing the goodness of others been so much of my life lately. Honestly, I think I may have cried more from all the kind gestures that you’ve shown me and my family than I have about the cancer itself, because I did nothing to deserve it. All I did was get cancer! Which is arguably a stupid thing to do.
When you face a rare disease with no clear solutions, you also think about God a lot. And all this love that you’ve shown me has reminded me of the gospel of grace — that what we receive is not always because of anything we’ve done to earn it, but sometimes it is given purely out of love.
When we met with the medical oncologist, we talked through some treatment options. I got an echocardiogram yesterday too.
She recommended we start with chemotherapy before surgery, because:
- This allows us a chance to shrink or stop the growth of the tumor, and any other early stage tumors not yet detected, which may also make surgery easier.
- This also enables us to find out if the LMS responds to the chemo — we can see once we surgically remove the tumor what the impact was. Otherwise, if do the chemo post-surgery, we won’t know whether or not it works.
What is not clear in LMS is the benefit of pairing chemo with surgery, but it is generally done since directionally studies suggest better outcomes when both are done than with surgery alone.
The regimen she recommended is called AIM (doxorubicin / ifosfamide / mesna). This is a very hard and aggressive regimen, and is given in-patient. I’d go in for 6 cycles of 4-5 days in the hospital, where it’s given to me via IV, 16 days at home, and repeat. It also has some long term risks such as congestive heart failure (1%) and risk of blood cancers like leukemia (1 in 1,000). I hear it is also hard on the kidneys — and remember, I’ll only have one after surgery.
People on this regimen cannot do much of anything — and generally don’t work during this time.
There is another she suggested called gem / docataxel, which is as more data behind it for uterine sarcomas than RPS. But easier to take.
From a patient board, I talked to someone with RPS who had consults at Memorial Sloan Kettering (MMSK), who recommended doxorubicin and olaratumab as the first line of therapy, because there seemed to be better survival data around it and it was less harsh on the kidneys. It is technically only approved for non-resectable (non-removable) tumors so there may be an insurance barrier. She then had two rounds of chemo after surgery, with zinecard to protect the heart (the doxorubicin is what increases your chances of heart failure).
I asked my oncologist to poll a few doctors whose names I got from MMSK and Dana Farber to get ideas. But at the same time, I’m working to see if I can get a quick referral to get a consult myself for a second opinion.
For someone who is data driven, this is hard, because there really isn’t good data around the relative performance of these drugs. As my cousin Gloria shared, there are no head-to-head comparisons of the regimens. Because the number of patients in the studies is very small, even differences in disease-free survival and overall survival are hard to tease out as the expected survival between the study populations could have been very different before treatment.
So, as a person qualified only to play a doctor on TV, I will have to make a call as to the treatment to pursue.
The bright side
Can I just grouse for one second about this sarcoma before we get to this part? I don’t even get new boobs out of this #@!$@ cancer!
- The past few weeks has been like a walking yearbook — it’s been so nice to reconnect and see friends from so many different chapters of my life and from all over. Thank you.
- The kindness of strangers has been overwhelming: I’ve received gifts and encouragement from strangers! From a student of a dear friend; from the sister of another. Thank you.
- I think my kids think it’s Christmas. They’ve gotten so much love and attention. Thank you.
- So many surprises. I can’t name them all. The time you’ve taken to think of us, share things with us, feed us. Thank you.
- More soft clothes. You know who you are. Thank you.
- Hindsight: this week there was a local boy in the news with bacterial meningitis. Some of you will recall the one-in-a-million type of bacterial meningitis Audrey had when she was two, and what a scary time that was — and hard it was afterward (and those of you who know her will know now she is a force to be reckoned with!). But that experience gave me the ability to reach out to a friend of the family’s as a resource, and to be grateful for that experience, hard as it was, in many ways. That’s probably for another post.