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Rising Ca19-9 and elevated Alkaline phosphatase

Posted by williebadger @williebadger, May 4 3:16pm

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.

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Turkey, Volunteer Mentor | @tomrennie | May 8 9:39am
In reply to @jcrouse "@williebadger Listen to your intuition, get a new scan (maybe before the Mayo appt) and get..." + (show)
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@williebadger Listen to your intuition, get a new scan (maybe before the Mayo appt) and get on RMC-6236 ASAP. Many of our doctors see so much "normal" deterioration of numbers and "surprise" recurrence that they can't maintain the level of urgency each of us have. Good for you to be listening and observing - you're doing the right thing to raise the alarm.

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@jcrouse Hi and welcome to Mayo Connect. You seem to have some some experience with this. Tell us a little about your experience please? Thanks.

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Colleen Young, Connect Director | @colleenyoung | May 18 7:27pm

@williebadger, just want to check in. How is your husband doing as you wait for the upcoming appointment? How are YOU doing?

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 21 6:25pm
In reply to @jcrouse "@williebadger Listen to your intuition, get a new scan (maybe before the Mayo appt) and get..." + (show)
Profile picture for ThxMSK @jcrouse

@williebadger Listen to your intuition, get a new scan (maybe before the Mayo appt) and get on RMC-6236 ASAP. Many of our doctors see so much "normal" deterioration of numbers and "surprise" recurrence that they can't maintain the level of urgency each of us have. Good for you to be listening and observing - you're doing the right thing to raise the alarm.

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@jcrouse, welcome. Are you also dealing with pancreatic cancer? Are you on the clinical trial RMC-6236?

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carlos322 | @carlos322 | May 22 7:01am

Hi all, I am a 74 yo married for 47 yrs retired MD diagnosed 11/11/24 and completed folfirinox, RT and Whipple. Now on 3 month cat scans and lab work surveillance. Doing well but living in the after diagnosis world with all that entails. A minority of my time is spent wondering if this cancer is going to come back. My Mass General team is superb!
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mcharlesfrancis | @mcharlesfrancis | May 23 7:45am
In reply to @carlos322 "Hi all, I am a 74 yo married for 47 yrs retired MD diagnosed 11/11/24 and..." + (show)
Profile picture for carlos322 @carlos322

Hi all, I am a 74 yo married for 47 yrs retired MD diagnosed 11/11/24 and completed folfirinox, RT and Whipple. Now on 3 month cat scans and lab work surveillance. Doing well but living in the after diagnosis world with all that entails. A minority of my time is spent wondering if this cancer is going to come back. My Mass General team is superb!

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@carlos322
I would recommend you go to the Seena Magowitz web site and sign up for the twice monthly zoom calls where we talk all about life drugs and health you will be with people from all over the country who are experiencing the same things that you are

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scooter369 | @scooter369 | May 26 12:23am

Have you done a test define what type of molecular gene mutation you have? If you haven’t, you should if you do or are planning on it, you will be able to take the results and match it up with Clinical Trials. I have done this with the help of my doctors, of course and a couple months ago. The cancer stopped responding to my first line treatment, and then my second line treatment. And then I got nervous as it sounds you did and I just started a clinical trial, which took a month to find and get into. And now my pancreatic stage four cancer is responding very nicely to the clinical trial drug. Which of course is tailored for my specific BRAF mutation.

I hope this helps as it has given me great help to keep the fight going in this stage. It is easier but harder to get from the previous stage to the stage in the treatment options
Scott

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