CEA rising with No Evidence of Progression (Covid related maybe)

LSU2001

Update on CEA CLIMBING

well it turned out that my CEA kept rising and I was taken off of folfuri+avastin and put on Lonsurf.  that lasted about 2 months and my scans showed more progression/growth in my liver tumors.  They took me off of Lonsurf in July and I was supposed to start Stivarga as my last chance chemo.  I was delayed in getting the new medication due to insurance then Hurricane Ida.  I started Stivarga on September 16th and Just finished my first 21 days on and 7 days off of Stivarga.  I have been on one chemo or another for the past 5 years and this is by far the worst side effects I have suffered.  Unending gut pain, lots of nausea and vomiting along with extreme fatigue, no appetite, and now my hands and feet are starting to get red and irritated (no blisters yet).  It sucks so much that I am going to talk to the onc tomorrow about ending the treatment and let the chips fall where they may.  getting a few more weeks or months is not worth the pain and anguish of this Stivarga garbage

Tim

 

sgold88

JJRies

Hi JJRies - Was reading your post with interest and I am hoping for the best for your Dad. I do just want to give you some additional hope and comfort - my wife was stage 4 at 39 yrs old - colon tumour and then two liver mets. That was two years ago. She had surgery on both and 12 rounds of chemo. She is now in remission with, according to her doctors, a really good prognosis for the future. While every cancer is different, rest assured that Stage 4 CAN in fact go into remission. There are lots of great recovery stories out there, the problem is that many people in remission try to forget about the whole ordeal and don't end up posting anything online because they want nothing to do with the topic, but rest assured remission is possible. Different doctors and patients may have different views of what "remission" is, but still - it is possible and happens more than people think. All the best.

abita

How many of the pills do you

How many of the pills do you take? Does the anti nausea med work? Are you moisturizing your hands and feet to prevent those issues? Doing what is necessary to alleviate the symptoms helped me. 

Trubrit

Seven years and counting

sgold is right, there are allot of Stage IV who are living the life. While some are on a form of chemo, others like myself, are counting up the years and doing well. 

I hope that they find that your dad had some kind of reaction to the vaccine, and that soon he will be off the harsh chemo.  

Welcome to the forum. I am happy that you found something here that gives you comfort. Stay for a while, we love new friends.

Tru

Gabby T

Stivarga

Tim, please don't give up on Stivarga so soon. This week I am finishing cycle #5.

In addition to keeping hands and feet moisturized, look on Amazon for cooling socks.... they were a lifesaver for me. A couple months ago when I started to have some stomach issues my oncologist told me to pick up Prilosec and it took care of it, so ask your Dr about it. Also ask him or her about adjusting the dosage in the future. Also stay hydrated

Before I started on Stivarga I researched  what I could and most of what I found was terrifying. So don't do that.

I've also spent a lot of time on different forms of chemo, targeted therapy etc. Dealing with this one does involve some trial and error, but many of the effects can be helped.

I'll never be cured, but I do consider myself to be a survivor because in a couple weeks I can say I'm still here after 6 years! I have bloodwork and see my oncologist every 3 weeks, and in mid-August my CEA had dropped into normal range. I hope I don't sound preachy, but I do hope you'll try it just one cycle at a time.

 

 

 

 

tanstaafl

(hyper) inflammation

I would be suspicious of Covid's spike protein for its inflammatory character, inflammation affecting both the CEA measurement and potentially awakening the sleeping giant.  It used to be common on the boards to see people's  CEA/CA199 markers jump 2x - 3x after majorly inflammatory procedures like RF liver ablations.  Ditto patients who had major inflammation from disease; one stage IIIc had malaria and major inflammation then both CEA and the CRC took off.

Knowledge is power.  I would track both inflammatory markers for CRC and Covid, like hsCRP, ESR, NLR, ferritin and d-dimer with the CEA, CA199, LDH series  and share here. 

(NLR, Neutrophil Lymphocyte Ratio, comes from the  CBC) ditto PLR platelet lymp ratio.  Lymphocytes for CRC patients tend to already be fried by chemo and/or RT.

We used **a lot of anti-inflammatories**, natural and medical over the years for inflammation, the cancer itself, and marker measurement improvement.  e.g. IV vitamin C, concentrated fish oil, 1/4 aspirin, celecoxib, boswellia, many flavonoids 6 kinds at a time.

That spike protein is a hyper-inflammatory thug.  We had to rescue an extended family member from severe covid inflammation (cytokine storm) with oxygen and our supplies.  Our cancer nurse blew 300,000 mg of IV vitamin C through them (176 lb)  in less than 24 hours to normalize temp and spO2.  The nurse said this was 5 days faster than normal. Even four full days later, with 2 days of IV steroids too, some inflammation markers were still off the f'g charts. After the first day's 300 grams IVC,  IV vitamin C was run another two weeks at 50 - 100 grams per day.  A week after the first lood test, inflammation was way down, most normal.

Tim, some advanced stage 4 patients have been able to re-light 5FU effectiveness through daily oral Xeloda and various potent anti-inflammatories, starting with the ADAPT protocol (Xeloda + Celebrex), but often better extended with other mild generics mostly high potency nutraceuticals and chronomodulation.     

LSU2001

New growth and new Mets

Hey gang,

First thanks to all of you who posted esp. the encouragement to keep on keeping on.  I am currently about 3/4 of the way through my second round of Stivarga and I must say that this round has been easier than the first at least so far.  It seems that the original jump in CEA was caused not by the vaccine but because of my cancer progressing.  Dr. did say that for some reason my cancer has become more aggressive than before and was growing at a faster rate than they have seen with previous progressions.  

I have been at MD Anderson for the past few days for scans, bloodwork, and appointments with my oncologist and a doctor over numerous clinical trials.  The bad news is that my cancer has been growing for a while now and I have new lesions in my perirectal area, 2 new Mets on the liver, a new met on my iliac bone in my pelvis several newly enlarged lymph nodes, and numerous low-grade opacities in my lungs that may or may not be new Mets.  Could be some type of infectious process according to the oncologist at MDA, I will know more at my next scan.  My original rectal tumor has begun growing again and has invaded the perirectal space which the Drs. believe is causing all of the pain in my rectum and hip.  They also recommended that I seek out my radiation specialist to see if these tumors in the rectum and hip/iliac bone can benefit from some palliative radiation to relieve the pain.  I will find out about that next week when I see my local medical oncologist

They recommended that I stay on Stivarga since my CEA numbers are falling now.  I will get rescanned in mid-December to see if the Stivarga is working or not .  Anyway, with all this news, I asked what kind of timeline I am looking at if the Stivarga doesn't work and the oncologist at MDA said between 6 months and a year.  So I now have to decide if I want to try a phase 1 clinical trial at MDA or look for local trials.  I am not very inclined to enter a phase 1 trial since I would rather have 6 months of quality time rather than keep fighting a losing battle with an untested drug for a hail mary pass.  I have some big decisions to make in the next feew weeks but I will keep fighting even if I don't do a trial.

Tim

Real Tar Heel

My CEA doubled today. Last

My CEA doubled today. Last scans (two weeks ago) showed no changes. I would presume I'm in the same boat as you since my Oncologist mentioned off-handedly that there were "some more things we can try," which was odd.

gooddaddy

I was diagnosed with stage 4 colon cancer in Sep 2020. Had a part of my lower left descending colon surgically removed to rid of the cancerous tumor. Thereafter, underwent 13 cycles of chemo therapy. 

My CEA level during the initial diagnosis was 7.0 ug/L. By May of 2021, I was totally off chemo drugs. My CEA level was mostly stable between 1.3ug/L to 1.9ug/L. At one point in Feb 2022, it was 0.9ug/L.

I had a total of 5 covid vaccinations. The following is the schedule of all the covid vaccination I had:-

* 6 Aug 2021 - Pfizer

* 27 Aug 2021 - Pfizer

* 26 Jan 2022 - Moderna

* 25 Jun 2022 - Pfizer

* 3 Feb 2023 - Moderna Bivalent

Following the latest vaccination on 3 Feb 2023, my CEA taken on 3 April 2023 was still a low 1.8ug/L. But the subsequently 3 reading were elevated.

However, my CEA level shot up to 7.0ug/L on a test taken on by 26 Jun 2023. It was repeated on 18 Jul 2023 where my CEA level continued to elevate to 9.5ug/L. My oncologist and I were concerned. I was sent to do a colonoscopy and a CT scan. Both test showed nothing abnormal. Determined to find out the reason(s) of my elevated CEA, I was sent to do a PET-CT scan as well as a gastroscopy. Again, both test results were negative.

Today, 26 Sep 2023, I did my CEA test again, It has elevated to 15.7ug/L. I am due to see my oncologist tomorrow. I am getting really worried as we have exhausted almost all avenues of trying to nail down the reason(s) of my recent CEA level elevation. I wonder if it could be the Moderna Bivalent covid vaccine which I took on 3 Feb 2023 that is causing this elevation in my CEA levels for my recent 3 tests.

I wonder if anyone could shed some light here to help me navigate during this traumatizing period. It has been extremely difficult for me and my family.

John

gooddaddy

https://csn.cancer.org/discussion/comment/1709214#Comment_1709214

I have to add that, other than the rising CEA levels, I don’t feel unwell. My appetite is good, I have good sleep, continue with the various exercises (yoga, dragon boating, Forest walks, cardio exercises and stretching) and I even gained almost 4kg in weight.