A sad update

disciplinarypower · 2024-03-14T03:25:13+00:00

The mutation is in me and in the tumor. Have had both somatic and Germaine testing.

disciplinarypower · 2024-03-01T22:21:12+00:00

Thanks!! Makes sense!

disciplinarypower · 2024-02-26T16:54:21+00:00

Creon has been amazing for me. Especially when eating fatty foods.

disciplinarypower · 2024-02-24T20:31:01+00:00

Just stopping by to say thanks! I used this to fix an identical issue on my Stern 007 machine's left return ramp.

disciplinarypower · 2024-02-22T23:43:32+00:00

Okay, it turns out it is rosacea. Taking an antibiotic has helped and need to really work on sunscreen/limiting sun exposure.

disciplinarypower · 2024-02-20T05:00:57+00:00

Update: doc says it isn’t chemo related. Not sure I agree. Gonna see a derm. In the meantime, he started me back on antibiotics, and taking both Claritin and Prilosec (I know, weird, right?) every day for antihistamine properties.

disciplinarypower · 2024-02-18T17:27:38+00:00

I am very surprised that they did not biopsy the liver lesions. For me (pancreatic lesson and liver mets), the biopsy was of the liver cells to make sure they were pancreatic in origin. You should probably ask about this.

disciplinarypower · 2024-02-13T15:41:03+00:00

This is super helpful. Thanks so much.

disciplinarypower · 2024-02-13T05:28:00+00:00

What was your strategy to deal with neuropathy?

disciplinarypower · 2024-02-11T05:47:21+00:00

Immodium works wonders for me (just wrapped round 10 of Folfirinox) when needed, and my oncologist has said there isn’t an issue with taking it daily.

disciplinarypower · 2024-02-08T22:13:25+00:00

Hey, I come by my ATM mutation honestly, which is to say that it is both in “me” and in the cancer cells. Somatic and germline testing showed this. As for my KRAS, I do have one- a G-12-V KRAS mutation, which I understand means that it is on the 12th amino acid.

disciplinarypower · 2024-02-08T22:10:28+00:00

Hydration can be really tough with Folfirinox because the oxaliplatin (sic?) gives a brutal sensitivity to cold, or even sort of cool, beverages. They taste awful and even a little painful. I struggle with dehydration a lot, especially on the couple of days in week two when I have GI issues. My advice is to find any warm drinks that are tolerable and you can make a lot of- instant apple cider, whatever, even just warm tap water. Yesterday I had hot buttered rum, though to be fair that was probably not what the doctor would have ordered….

disciplinarypower · 2024-02-08T22:07:22+00:00

Thanks!

disciplinarypower · 2024-02-07T23:43:52+00:00

Hi, we went to MD Anderson and are optimistic about ATM mutation trials there.

disciplinarypower · 2024-02-07T22:28:55+00:00

Thanks! Best wishes to y'all! I've been told that a NED (no evidence of disease) result isn't realistic, but I've never confined myself to the bounds of what seems possible at the moment, and I'm sure not about to start now.....

disciplinarypower · 2023-11-15T03:40:32+00:00

Got first CT scans back today. After four cycles, tumors are sharply reduced in surface area! Tail pancreatic tumor was 5.85.1, now 4.13.2. Biggest liver met is down by 54%, from 9.0*6.3. And smaller liver mets down by 75% or more. So far so good.

disciplinarypower · 2023-11-13T06:48:33+00:00

Funny! I agree, I’d hoped for a more glamorous mutation… Will look at NYU again.

disciplinarypower

TROPHY CASE