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May 26-Jun 01

Week of May 26-Jun 01

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Good Evening All,

Mark did have his 5th infusion today-his first at the outpatient site--but, it took awhile to make this decision from the medical team.  The U consulted with the Australian testing site to decide to help determine if we  proceed ahead. The Australian site had a patient who had low neutrophils--it is thought ( we don't know for sure) that Mark's CRS episode of a couple of weeks ago; in which he had to be given the antidote drug of Toci can lower one's neutrophils and it may take up to 4 weeks for that to improve. 

The team also believes that the high doses of Dexamethasone steroid Mark receives as a pre drug treatment  may be a contributing factor.  So, with "fingers crossed" in my language,  the Dex was reduced by 50% this time.  The possible downside of that is that Mark's fever may shoot back up to the scary zone, culminating in another CRS episode.  Please pray this does not occur.

He is at home--I wavered about this--but the medical team felt he did SO well last week, that he should be able to get through this next 24 hours without a high fever.  Yeah, well, in my mind--we have 2 additional variables that weren't present last week.  1.  The low neutrophils and 2.  The reduction  of steroids.

So, I am feeling quite anxious to be honest.

The CT results are mixed (what else is new).  Mark does NOT have the infection that sometimes occurs from Tak 186 (thank you Lord!!).  He has some lung nodules that have shrunk, but he also has some very tiny new nodules.  Again, this is the horror of pancreatic cancer--it knows how to hide from and evade treatment.  His pancreas site and his abdomen did not show growth at this time.

Assuming Mark's does well this weekend-he will have infusion on June 20th.  That is as far as we know. He will also have a specialized CT with the aid of AI to attempt to get more definitive measurement of specific targeted nodules that are cancerous.   The date for that CT is June 27th. The out come of that CT will determine his ability to stay in the trial.  Trial protocol says you can't have more than a 20% cancer growth. 

I hope this makes sense.  My brain seems a bit foggy--not a verse can I think of-I am back to the child's song once again- "Jesus loves me, this I know." 

Your words of encouragement continue to mean just so much!

Love, Darc

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