Support Registry Update

What’s next?

In support of
The Steinhaus Family
View Support Registry
It’s been a while since our last update. I’ve returned to work full time, and what’s happened since the last post isn’t as straightforward to write about as previous updates. 

Today we’re at NYU for chemo #6. After this round, Andrew will likely have just two more chemo days. No matter what’s next, his oncologist strongly believes Andrew’s body needs to rest. Time off chemo while it’s still working—especially the drug Oxaliplatin, which is most toxic to the nerves in his hands and feet—could not only roll back some of his neuropathy but also allow for him to possibly go back on a full dose at a later date. Oxaliplatin is believed to be the drug most effective in shrinking tumors in BRCA-positive people like Andrew.

What happens next? 
Option 1: Start taking a drug called Olaparib. This is a targeted therapy for BRCA and is the typical pancreas cancer protocol for those taking a break from chemo. Olaparib belongs to a drug class called PARP inhibitors, and its job is to provide a maintenance period, where the tumors are stable while you rebuild tolerance for chemo. You can stay on it for weeks, months, or years—until a CT scan shows tumor growth. At that point, he’d probably go back on chemo. People who didn’t do as well on their first-line chemo regimen may progress to a second-line chemo. We hope that Andrew would be able to return to the current cocktail and see more shrinkage. 

Option 2: Enroll in a clinical trial that combines Olaparib with an immunotherapy that’s FDA-approved for other cancers called Keytruda. Immunotherapies have not proven effective in treating pancreas cancer overall. But there’s a belief that it may work against BRCA in conjunction with a PARP inhibitor. NYU is opening a trial site so he could participate and stay with his home team of doctors. The trial is randomized to offer a 50% chance of receiving both medications. If he doesn’t get Keytruda, he would get Olaparib no matter what. We will not know if he’s getting both or just one medicine while on the trial. 

Option 3: Consider one or two procedures. This was the surprise that came from the tumor board discussion a few weeks ago. Typically they don’t operate on stage 4 patients because the data doesn’t show that surgery improves survival outcomes. Due to Andrew’s age and that he’s otherwise healthy, some surgeons felt it was worth a conversation. Initially, Andrew thought his oncologist was more interested in this idea than we learned he really is. There’s a fundamental difference in medical oncologists—who generally think you treat cancer most effectively with a systemic approach like chemo and other drugs—and surgical oncologists, who want to cut it out. (Of course many people do both, but it’s the stage 4 part that makes this complicated.) 

The big surgical option for pancreas cancer is the Whipple. At first Andrew was excited about it because removing the primary cancer tumor is obviously attractive. But Whipples are maximally invasive with real risks and potential long-term downsides. His oncologist doesn’t like it because it doesn’t address microscopic pieces of tumor, which would probably eventually reconstitute and he may not be any better off. His cardiologist doesn’t love it either because he’ll have to discontinue blood thinners for a while, and there’s more than a small chance of uncontrollable bleeding. Andrew is now leaning away from this option, but it’s not totally off the table. 

Another procedural option is called a histotripsy—high-frequency ultrasound that can zap superficial liver tumors and may even elicit an immune response. Both the oncologist and cardiologist are comfortable with this option, and ideally Andrew could do it before or during the clinical trial. However, a histotripsy would probably DQ him from being on the trial. Generally, trials don’t want you to do anything else that could complicate whether success (or not) is attributable to what’s being researched.

We hope the next CT scan in October-ish helps inform the next treatment. In the meantime, Andrew is trying to set up an appointment at Sloan Kettering for their opinion. He often says he feels he has to play a perfect game with his disease. There may not be time to recover and move to the next option if he tries something that doesn’t work.

Besides this casual mental turmoil over what’s next, he is still looking and feeling good. He’s now more than regained the weight lost in the hospital and after chemo #1. We are celebrating that his watches are tight this morning as we walk into chemo #6. 

Browse Current Support Options

View Options

Comments

Abdulla Zubair

It is admirable to see how you are handling this as a family. While this is Andrew’s journey, we all are able to take so much from it. So thank you Elyse for all of the updates. I agree to keep searching for which option would be best. Praying for you to select the option that is the best for your health. Hang in there, Andrew. You are doing great.
  • over 1 year ago

Francesco Deluca

Glad to hear some optimism in his outlook. Here if you guys need.
  • over 1 year ago

Richard Salsano

It sounds like there are a lot of options on the table which is good news IMO. I think trying to get some input from MSK also make sense. Leave no stone unturned in the search for best overall treatment and outlook. Thank you for keeping us all informed with the details and decisions. It's really helpful for all of us out here who care so much about Andrew to hear how things are going. Sending love and positive thoughts as always.
  • over 1 year ago

Kimberly Yates

Thank you for the thorough update! Adjusting my prayers to help everyone involved decide between these options with deep
Wisdom and peace. Praying for rest and restoration for the whole family. I love you.
  • over 1 year ago

Mary Alice Cashin

Hi - so glad to hear Andrew is doing well and options are opening up for next steps. I know it’s a lot to consider but it’s clear you are a great team and doing everything humanly possible to make the right choices for your family. Your update is much appreciated. Keeping you all in my prayers.
  • over 1 year ago