Connect
Rising Ca19-9 and elevated Alkaline phosphatase
My husband just finished his 5th session of Gem/Abraxane. This is his second line treatment. He did 11 rounds of fulfirinox before it stopped working. His Ca19-9 has just continued to go up with this new chemo: 143 to 265 to 423-and now 719. A month ago his alk phos was 95 and then now it is 165, which I know isn't horrible. It had been going down and then shot back up this time. He has also mentioned a few times that his bones hurt which we had been assuming was from the new chemo. Now with everything combined, I am worried that this new chemo isn't working. I have message into oncologist to see about getting scan done sooner, as right now they don't have one planned until June 18th. I am just extremely concerned. He for the most part is still doing really good. He is active and eating fine (other than chemo day and day after). He has maintained his weight although I feel like he is quite a bit thinner (he has always been a bigger guy) and his pants are practically falling off. The oncologist never seems worried but makes us feel like there is no hope at the same time. We are also seeing oncologist at Mayo Rochester and go back at the end of this month. Thank you for listening to me vent my concerns. It helps to be able to tell people who understand what I am going through.
Like
Helpful
HugInterested in more discussions like this? Go to the Pancreatic Cancer Support Group.
Connect
I do a CT and PET scan every 3 months. You may also want to ask your doctor about KRAS inhibitor drugs, depending on your specific mutation.
Daraxonrasib (RMC-6236)
“Pan-RAS” inhibitor (covers multiple KRAS mutations)
Showing strong early results and moving into Phase 3 trials
Many oncologists think this could be a major breakthrough
Ask about this drug it will be avaliable soon
-
Like -
Helpful -
Hug
3 Reactions@mcharlesfrancis
I've been a cancer fighter (not feeling well enough to be labeled as a "survivor" at this point in time, though I once was) since late 2022. I've employed many modalities (chemos 5FU, Naliri, Abraxance/Gem), SBRT, Histotripsy and distal pancrectomy. My cancer antigen hovering in the 80,000+ range right now so life is tough. I do push myself to do the most I can each day. Eating is ok a few days after chemo. I've lost 15-20 pounds since last year, but I had been keeping a "fat savings account" so I'm probably healthier in that way: do most of my own healthy cooking. My cancer metastasized to my lungs and liver (1 lesion each) and to the dreaded abdominal peritoneum. 6236 was released last Friday for use and at my appt yesterday my oncologist advised me to get on it so she is ordering it for me since I've literally tried everything else to this point. It's early release is feasible due to a congressman who's been on it and has been given extra months so far for cancer relief. Please look into, everyone.
-
Like -
Helpful -
Hug
4 ReactionsI wanted to add that the latest Guardant 360 test shows I no longer have the KRAS mutations (;just TP53 and SMA4); however UCI oncologist yesterday said 6236 also works on KRAS wild or instances where there is no KRAS present.
-
Like -
Helpful -
Hug
2 Reactions@mnewland99
I will definitely be asking about the RMC-6236 at his next appointment. I don't think his current oncologist will be willing to but the one he sees at Mayo I am sure will, because he mentioned it last appointment and that they were just waiting for it to get approved.
@williebadger
Congressman Ben Sasse did an interview with 60 minutes about it; you can search for it.
Good luck!
@mnewland99
This is VERY interesting. I just did Guardant 360 and it said I don’t have KRAS. It did show the TP53 and a new one, BRCA2. I don’t think I trust this test. My oncologist in Arizona, a pancreatic specialist, was suspect as well. He suggested retesting.
My original genetics testing was processed by Ambrey Genetics. Both that report and somatic tests showed KRAS G12D. Go figure…
@gamaryanne
I no longer have KRAS. I think Guardant is a reliable test. Weird about the BRCA, however, maybe testing sensitivities have improved?