Update

Erica2016
Erica2016 Member Posts: 47 Member
edited May 2022 in Colorectal Cancer #1

Hello friends I have not checked in this forum for months. I still have three mets in my lungs and was on maintenance chemo 5fu until today. My doctor ordered a blood /tissue test called Signatera which looks for cancer cells in your blood. The results came up negative so we decided to take me off all chemo and observe me every two months. Has anyone had experience with Signatera or any outcomes? the test is relatively new. I told my family the news and everyone is excited except myself, I am afraid more mets or my current mets will grow while off chemo. I can't ever accept small wins because I'm afraid of the outlook my future has. I am always thinking of you guys

Comments

  • Soundings
    Soundings Member Posts: 14 Member

    My wife uses the test. She is at Hopkins and has used it since the beginning of her diagnosis in July 2021. She started off at over 10,000 (huge liver met) and by the 2nd chemo was down to about 65.

    The Signetera test is good, but City of Hope’s study last year determined that it’s not as effective determining lung or peri mets. Maybe they shed less tumor cells? There’s a lot of discussion of Signetera on Colontown. And they have been developing introductory materials for it and doctor’s talks as well. (Links below)

    A zero Signetera test is worth celebrating. But, given that recent study - https://www.cityofhope.org/news/signatera-liquid-biopsy I would not solely rely on it if you have a history of lung mets. I think if it stays at 0 and the scans don’t show anything (is your CEA a reliable marker also?) that would be the safest bet.

    I’m hoping for a 0 Signetera for my wife in the next couple of weeks.It is nice to have an additional tool and especially one that can give the team a heads-up before anything shows up on a scan.




  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member

    I have not been on chemo for 6 months. My tumors are stable. There is likely to be new growth at some point but I'd say take the win, stay off chemo until a scan shows growth and it's time to go back. Unfortunately I have no experience with the blood tests but it might have been nice to have them when I was first diagnosed.

  • abita
    abita Member Posts: 1,152 Member

    You have tumors and they don't grow when off chemo for 6 months? are they sure these are cancerous and not something else. I didn't even know that could happen. What are the tips to having that happen?

  • Erica2016
    Erica2016 Member Posts: 47 Member

    Soundings , I am actually being seen at City of Hope Los Angeles. They will run my CEA, MRI and Signatera at the same time. My CEA for the most part has been at 2.7 during my year on maintenance chemo. My three mets in my lung have been inoperable due to how small they are. I am also hoping for a 0 on your wifes next signatera as well. my best wishes.

    Real Tar, I believe you can request the blood test during your MRI/CEA check ups, its just an added test to monitor. 6 months of stable with no chemo sounds like great news to me. I'm also curious as Abita says what are the tips to keeping stable?

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member

    I did have a biopsy on the first one that showed up and the doc confirmed it was a met. I haven't had a biopsy since. That said, the tumors grew in between the time of the last CT scan in November and when I went into the coma, which was January. That's when they stopped FOLFIRI. All the scans I've had since showed no growth.

  • abita
    abita Member Posts: 1,152 Member

    A coma? from the folfiri? That is terrifying. That is a fascinating thing that they grew on folfiri, then stopped growing when you stopped folfiri.

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member

    I don't think that the FOLFIRI was the cause of the coma, it was likely related to the steroid induced hypoglycemia that at the time was going unchecked. Also, I was on FOLFIRI for several months prior and did experience 10% shrinkage prior to the cancer figuring it out, so to speak. That was shown in the first CT I took after starting. After that, no change for several months until one tumor started growing again. They stopped FOLFIRI because it seemed the detriments were outweighing the benefits. It may be pure luck or the D3 I take or some other thing that is causing stable tumors. Weren't yours stable for some time?

    Guess I should add that I contracted COVID a couple of weeks ago and made it through that fairly well. It was like having the flu. Thanking my parents for giving me a decent immune fighting system.

    I think the common experience on here is that the drugs work for some and don't work for others. I would guess that an oncologist confident in their field would think that the tumors being stable now is due to lingering effects of the drug. I tend to doubt that but I'm no oncologist.

    My doc wants to ride the good luck until the end of the summer and start a new drug, see what happens.

  • abita
    abita Member Posts: 1,152 Member

    I get waiting. Each drug only works for so long, so any time between is a bonus time. But I hope that it just stopped the growth altogether.