Support Registry Update

The next chapter

In support of
The Steinhaus Family
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We know we are long overdue for an update, and there is a lot of news to share. 

Histotripsy
Andrew had the histotripsy on January 2. Insurance did not block it, but have denied the claim. NYU is appealing on our behalf and we will try a few other avenues to get it covered.

The procedure itself went well—no issues with anesthesia or infection. The doctor said he was not able to target quite as big of an area as he wanted due to the tumor sitting too close to Andrew’s bowel. But the CT taken right after and a subsequent one showed a large histotripsy “cavity” that indicates the tumor is gone. 

We will learn more over time whether the procedure triggered an abscopal effect, meaning his immune system will activate to shrink his other tumors. This is believed to happen in 10-20% of cases. Getting the immunotherapy drug that’s part of the clinical trial could improve those chances. 
 
The following week we learned that two new clots are on his liver, almost certainly from the histotripsy. Andrew’s cardiologist said he isn’t concerned and doesn’t need to adjust his blood thinners, and these could go away.

Starting the trial 

Immediately following the histotripsy, Andrew’s medical team began planning for him to start the trial. Last week, we learned that he would receive the immunotherapy drug (Keytruda) in addition to the standard of care medicine (Oliparib) meant to give him progression-free time off chemo. This is huge and what we really wanted. 

The average time on maintenance for people taking Oliparib is 7 months. The study is trying to validate whether Keytruda can add 5 additional months. Of course we want longer, but it is a huge relief to get any time off chemo.

Last Friday, Andrew got his first immunotherapy infusion. It is only 30 minutes vs. 6+ hours of pre-medicines, chemo, and fluids on chemo day, on top of doctor appointments. He did not have any side effects that day, though immunotherapy side effects are cumulative and may not be seen for 4-6 weeks. Andrew is also taking the Oliparib 2x a day at home and is generally tolerating it well.

We are really looking forward to a quieter period with fewer appointments. The new cadence is every 21 days instead of 14. The next CT will be about eight weeks from now to see if his tumors are stable, have shrunk or have progressed. If they are stable or smaller, we will continue on the trial.

CA 19-9

A surprising piece of great news is that last Friday, his CA 19-9 lab dropped for the first time in two months. We anticipated the opposite, at least in the short term while his body recovered from the histotripsy. Instead, we are hopeful that this suggests the liver tumor that's now gone was indeed the one giving us trouble. That is really encouraging going into this next chapter.

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Comments

Francesco Deluca

Happy for you and your family. Hoping we can get together soon.
  • 11 months ago

Debbie Schlackman

It’s so good to hear encouraging news.
My love to you all.
  • 11 months ago

Mary McGill

Alot to go through but sounds encouraging. I am praying everyday for all of you. May God Bless you keep you strong and in faith
  • 11 months ago

Teri Garner

Praise Jesus for success with the histotripsy.
I pray it triggered an abscopal effect. Also, that the blood clots will dissolve without bad effects, and there will be no side effects from immunotherapy. Glad the CA19-9 has improved and you were admitted to the trial. All of this must be a relief. Please ask for any specific prayers. Love to all.
  • 11 months ago

Karell Roxas

I've been thinking about you both, a lot. Thank you so much for this update and I'm so happy to hear that it's positive. Hoping for the abscopal effect and looking forward to you all having some longer downtime in between all the treatments and appointments. Hoping the CT scan a couple months from now continues to show us what we want to see. Love you guys.
  • 11 months ago

Kimberly Yates

Great news is great news! Most of this seemed like very wonderful news (as a non medical lay person). Thanks for you updates. Love you all.
  • 11 months ago

June Littlepage

Sounds like progress and movement in the right direction. Thank you for the update. Continuing to pray for Andrew and you all. Blessings
  • 11 months ago

Richard Salsano

Sounds like some positive news which is great to hear. Perhaps the combination of modern medical science with prayer and positive thoughts from friends and loved ones is the healing cocktail working best for Andrew. We will all certainly keep doing our part. Thank you for sharing the update. Stay strong and think positive.
  • 11 months ago

Mary Alice Cashin

Glad to hear Andrew's treatments are working and there are some better options with downtime away from the hospital/doctors. Keeping your family in my thoughts and prayers!
  • 11 months ago

Meredith Bodgas

So happy to read all this great news. Hope the trial keeps the goodness coming.
  • 11 months ago