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Signatera Numbers are sky high and I'm terrified

Posted by kat77 @kat77, Oct 21 2:33am

Hi All-

Stage 4 metastatic colon cancer. Recurred in my skull and in bone mets in my spine, pelvis and femur, diagnosed in Sept 2022. Had a craniotomy, radiation in skull and lower back, did 12 rounds of the standard FolFox/Oxil. Everything shrank and and continued to shrink.

I stopped chemo June 1 and due to some pretty serious communication problems with my oncologist, I left him and started seeing another. I was off any chemo from June 1 to Aug 25, when I began taking 4000mg of Xeloda per day, 14 days on, 7 days off. On Sept 15 I started Avastin once every three weeks. (I had to delay the Avastin because I had to have non-cancer related surgery on my spine and needed the time to heal before taking Avastin.)

My old oncologist had been doing Signatera tests on me periodically without my knowledge while I was doing chemo, and then sent someone to my home to take blood. He never shared the test results with me even though I asked. My new oncologist did the first Signatera blood draw during my 2nd Avastin dose on Oct 6. I just saw those results (and the results of the previous three tests) today.

In April, my number was 3. In July, it was 58. In mid-Aug, a week before I began Xeloda, it had jumped to 219. And my Oct 6 number, after doing two rounds of Xeloda and one round of Avastin, the number had jumped to 273. Needless to say I am a basket case.

We had done a PET scan in June which showed further shrinking, and I had an MRI of my pelvis in August which showed no further growth. My last CEA test was July 19 and it was 0.4. I am flabbergasted that my Signatera numbers have jumped so high so quickly and I don't know what to think. My new oncologist responded to me right away and wants to do a new PET/CT to see what's going on.

Has anyone ever seen Signatera numbers jump so high, so quickly? I'm guessing this means the Xeloda/Avastin aren't working, and I'm not sure where that leaves me with treatment or if I have any hope at all of bringing this back down and keeping it in check for at least a couple years. I thought I was doing so well and now it's looking like I'll be lucky to see another year. And I cannot stop thinking about it.

If anyone has had any experience with the Signatera numbers, or has not seen progress with Xeloda, curious what your next plan of action was.

Thanks for listening.

KT

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 30 5:42pm

@kat77, I'm sorry to hear about this latest news. That must've come as a sucker punch out of the blue like that when you felt things were going well. I'm tagging fellow members like @reidroberts @cjay @rjjacobsen @pjebp @mustang08 @amyb5, who may have thoughts and support to add.

Kat, have you had the PET scan done? What does your oncologist suggest as next steps? And most importantly, how are you doing with all this? (I know. Easy to ask. Not so easy to answer.)

REPLY
kat77 | @kat77 | Oct 30 8:17pm

Thanks so much for responding. I did have the PET last week and saw the results same day. There is a new spot on my right side pubic bone about 1.7cm in size that lit up from the test. The good news is that none of my other metastasis spots seem to be active. The tech recommended a pelvic MRI to get some further detail.

I discussed the findings with my oncologist a couple days later and he said he was actually quite relieved by the report because he thought it might be much worse due to the number spike. He feels that for right now, we should stay the course with the same chemo meds and keep a steady eye on how things progress. He also told me that the Signatera is relatively new and that he's had about 100 patients doing it and he's come across several incidences where numbers have climbed or spiked, only to go back down again.

While I do trust him and feel he is paying attention, and more importantly, taking action, I still feel like I should be doing something more (or something else) to address the fact that a new tumor has popped up. I speak to the doctor once every three weeks, the day before infusion, and I would like to ask some new questions that have surfaced in the days since we spoke.

My old oncologist had also prescribed the current chemo program I am on, but he said it would be for a finite amount of time. My new oncologist said I would likely be on for the rest of my life. Also, my new oncologist was a bit aghast that I had been off of chemo for 2 months (at that point) and asked why. I had no answer other than that's what my oncologist felt was okay. I wound up being off chemo for 3 months (as I believe I mentioned earlier), so I'm wondering now if perhaps this new tumor formed during that time. Because if not, than I'm worried about continuing on a chemo regimen that isn't necessarily keeping new cancer from happening.

That's what's really messing with my head right now- am I doing everything I can to keep the cancer at bay, or am I sitting back and relaxing too much? I thought I was doing everything I was supposed to after my first bout of cancer in 2016. I went for my scans, I did my blood work, never missed an appointment, even changed oncologists when I felt my first one was not serving my needs. (I'm now on oncologist #3.) And still, my cancer came back, but it returned so largely that it made no sense for someone who was being diligent. So clearly I missed something or should have been doing more. And I don't want to repeat that mistake. So sticking to the "plan" if the plan isn't cutting it is making me very uneasy.

I'm not sure what to make of the Signatera numbers going up and down for patients. I am going to ask that they start doing regular CEA tests so I can compare those numbers to my Signatera numbers. My last CEA test was in July and my number was 0.4 (when my Signatera number was 58). I don't know if my CEA climbed commensurate with the Signatera climb since no further CEA tests were done.

All that being said, I think I am down off the ceiling in terms of panic and thinking I'll be dead in less than a year, which is really important, of course. I can't function if I'm walking around in a panic all day. But yes, I would love to hear from anyone else who has any Signatera number oddities and how they played out. Thank you.

REPLY
1 reply
rjjacobsen | @rjjacobsen | Oct 31 2:12pm
In reply to @kat77 "Thanks so much for responding. I did have the PET last week and saw the results..." + (show)
@kat77

Thanks so much for responding. I did have the PET last week and saw the results same day. There is a new spot on my right side pubic bone about 1.7cm in size that lit up from the test. The good news is that none of my other metastasis spots seem to be active. The tech recommended a pelvic MRI to get some further detail.

I discussed the findings with my oncologist a couple days later and he said he was actually quite relieved by the report because he thought it might be much worse due to the number spike. He feels that for right now, we should stay the course with the same chemo meds and keep a steady eye on how things progress. He also told me that the Signatera is relatively new and that he's had about 100 patients doing it and he's come across several incidences where numbers have climbed or spiked, only to go back down again.

While I do trust him and feel he is paying attention, and more importantly, taking action, I still feel like I should be doing something more (or something else) to address the fact that a new tumor has popped up. I speak to the doctor once every three weeks, the day before infusion, and I would like to ask some new questions that have surfaced in the days since we spoke.

My old oncologist had also prescribed the current chemo program I am on, but he said it would be for a finite amount of time. My new oncologist said I would likely be on for the rest of my life. Also, my new oncologist was a bit aghast that I had been off of chemo for 2 months (at that point) and asked why. I had no answer other than that's what my oncologist felt was okay. I wound up being off chemo for 3 months (as I believe I mentioned earlier), so I'm wondering now if perhaps this new tumor formed during that time. Because if not, than I'm worried about continuing on a chemo regimen that isn't necessarily keeping new cancer from happening.

That's what's really messing with my head right now- am I doing everything I can to keep the cancer at bay, or am I sitting back and relaxing too much? I thought I was doing everything I was supposed to after my first bout of cancer in 2016. I went for my scans, I did my blood work, never missed an appointment, even changed oncologists when I felt my first one was not serving my needs. (I'm now on oncologist #3.) And still, my cancer came back, but it returned so largely that it made no sense for someone who was being diligent. So clearly I missed something or should have been doing more. And I don't want to repeat that mistake. So sticking to the "plan" if the plan isn't cutting it is making me very uneasy.

I'm not sure what to make of the Signatera numbers going up and down for patients. I am going to ask that they start doing regular CEA tests so I can compare those numbers to my Signatera numbers. My last CEA test was in July and my number was 0.4 (when my Signatera number was 58). I don't know if my CEA climbed commensurate with the Signatera climb since no further CEA tests were done.

All that being said, I think I am down off the ceiling in terms of panic and thinking I'll be dead in less than a year, which is really important, of course. I can't function if I'm walking around in a panic all day. But yes, I would love to hear from anyone else who has any Signatera number oddities and how they played out. Thank you.

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I have no special knowledge or experience with what you're experiencing.
Except maybe this: You stated:

"That's what's really messing with my head right now- am I doing everything I can to keep the cancer at bay, or am I sitting back and relaxing too much? I thought I was doing everything I was supposed to after my first bout of cancer in 2016."

First, that's a normal response and is quite common.

Second, I think it's helpful to not replay that self-doubt video in your mind and even worse to blame yourself for not doing enough. Cancer is an extremely fickle and unpredictable thing – there is nothing you did wrong and it's not your fault. There are no guarantees going forward/

Please be confident that you and your treatment team did your/their best knowing what you/they knew then and leave that doubt behind. If you should have and could have, you certainly would have!

Focus on moving forward according to your medical team's plans, but also be flexible to adjust the plan as necessary. Forget the past and strain toward the goal.

It's not my intent, but if this seems a bit rough/harsh, forgive me .

All the best!

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