Had to schedule my next PET/CT already

Kathryn_in_MN Member Posts: 1,252 Member
My last PET/CT was just the beginning of February. I wasn't supposed to need another till May or later.

Well, going on maintenance chemo may not have been the right thing for me. My CEA had stayed at 2 for a few months, and my PET/CT showed clear. My full skeleton lit up, but that was because I was on Neulasta. So we made the decision that I would go to maintenance after 8 tx of FOLFIRI and Avastin, instead of 12. Save the big guns for later if I needed them again. I've been on just 5-FU and Avastin.

So I've ben on maintenance for the last 3 tx. My CEA went to 4.2, then two weeks later 4.9. I was concerned because CEA has always been a good indicator for me. My oncologist wasn't too concerned and said that we now really have to look at balancing quality of life and keeping cancer at bay, and/or under control - slow growing if not gone. My real worry is that I will have an extra 3 week break right now, 5 weeks between chemo cycles. But he stil wanted me to keep my plans. My daughters said they weren't worrked if my onc wasn't worried. He has always pushed me very hard. So if he's letting up, it should be ok.

So yesterday he said he did want me to come in for labs as soon as I was back - before my chemo day. And if my CEA was over 6, we'd do another scan. Under that we'd just continue as we are. Because he didn't think we'd see anything on a scan yet till it gets above that. I was supposed to have CEA checked next week again right before I leave, but the orders for my labs yesterday hadn't been changed and they sent in for my CEA check.

I got the bad news today. Just one week since my last CEA check and I jumped again, from 4.9 to 6.2. So instead of waiting to see what it is when I get back, I had to schedule the PET for when I get back. By then I suspect I will have the highest CEA I have ever had. I haven't been over 13 yet. Between 6 and 12 we've been able to see my active cancer on PET scans.

I'm both nervous and thinking there are some good parts to this. Chemo has always been really hard on me - FOLFOX and FOLFIRI. But I've been doing better on the maintenance chemo of just 5-FU and Avastin. The crazy thing is I feel so much better, but at the same time, my cancer is progressing again - cancer makes no sense sometimes... Since we don't know yet where my progression is, if it turns out to be liver or something resectable, it will be good that I will be off Avastin for 5 weeks, so then I could schedule surgery not too far out. Also no matter what course of action I need to take to jump back in heavy battle, I will be stronger to do it again after a nice break.

I'm still bummed though - hard to keep going on the rollercoaster ride... my ups and downs seem to come a lot more often, and closer together than most. I'd love to have 1/2 year or a year in between flare-ups, rather than just 1-3 months.

I haven't been on the colon cancer boards much lately because once I started having more energy and more better days, I have been taking advantage to try to get my work more caught up. And when I learned my CEA was rising, I just didn't want any more reminders of cancer for a bit. Not sure how much I'll be on while I am gone for my stepson's wedding, and then some downtime for just my husband and I after the rest of the group goes home. I do think about all of you often, even when I'm not here much.


  • CherylHutch
    CherylHutch Member Posts: 1,375
    Awwww Kathryn!
    That's a bummer Just before you are about to go away to celebrate a happy occasion, you don't need this hanging over your neck! And yes, you most certainly do deserve a longer break between flareups... just to get your life back onto a nice normal pattern and strength back into your system so you are ready to tackle the beast when you need to.

    I know it's so hard to thing, but, go and enjoy your stepson's wedding and then some downtime with your hubby to enjoy some "us" time. Although your CEA has been a good indicator in the past and is probably very sensitive to any changes in what's happening with your cancer... even if they CEA jumps up to over 13 by the time you get back and have your PET scan... remember that it can jump back down fairly quickly too once you find out what's going on and then your onc changes your plan according to the findings. I was really feeling bummed myself when I started this Irinotecan treatment and was having such a hard time with the first treatment. My CEA is a good indicator for me too, so when it kept rising, we knew something was on the move... and when I got my CEA results after the first nasty treatment and it had jumped to 25.0... well you can imagine how bummed I was about that. Then the second treatment, which was only a half-dose, the CEA dropped a big 10.0 points to 15.0. That's still high for me, but hey, as long as this treatment is going to bring it down, then I'm happy that it's working... so don't get too discouraged. It can change to a downward trend just as fast as it changed to an upward trend. It's that darn yo-yo affect that we all can never quite get used to, even though we know that's just the nature of the journey.

    Hang in there... and put this all aside to enjoy the wedding and some time with your hubby.

  • Love2Cats
    Love2Cats Member Posts: 127
    Hi Kathryn
    I just wanted to say "hello" and send well wishes your way. I hope your CEA improves, and you enjoy your stepson's wedding.