CEA Uptick From 3.3 to 3.4……..Any Cause For Alarm?

[roadrunner]

Tomaz26:

I don’t know if it helps at all, but all the reading I have done on the topic indicates that pulmonary mets are generally seeded long before primary tumor resection. It’s generally a matter of years, not months. I don’t know what size the mets were when discovered in your case, but if you know the doubling time you can probably confirm that pretty easily. Some modeling indicates that it mostly happens very early in the course of disease. So perhaps the recurrence made your W&W choice a “wrong decision,” though those are usually salvageable, but I don’t think you should beat yourself up about the pulmonary mets (if you are!). Surgery on the primary likely would not have changed that outcome.

[Tomaz26]

@roadrunner

Thanks! Yeah, I though so too. As I did not have PET CT done before, only regular CT at the time of DX, those lung mets could be there already.. PET CT was done 15 months after DX CT so this was a long time.. One thing that would help if I was to do surgery is that I would have at least that part solved. Although recurrence somewhere higher in the gut/rectum could probably still happen. Now it is in almost the same spot. On the other hand I had better quality of life and no surgeries and this is also why I choose W&W in the first place. At 41 years it matters

[Rikimaroo]

RikiMaroo:

what kind of chemo are you on now?

I am in the same position as you two guys.. After SOC rectal tumor gone, placed on W&W instead of surgery and it was a wrong decisio. 9 months later a recurrence in rectum plus 6 lung mets scattered across lungs.. Placed on CAPIRI and Cetuximab but canceled both after only 1 round as I had nasty side effects. I had dysarthria which also happened on last rounds CAPOX during 2020 and ugh, its worrisome. You feel like having a stroke. Cannot pronounce words..
Now I also question my way of trying to "cure" it with diet tweaks, 50+ supplements etc and no chemo. I am only on capecitabine now and lowered it to 50% of the dose prescribed which I dont think will do anything.. Capecitabine alone anyway
even in high dose would probable not do much, and is quite toxic too. No option of SBRT or any surgery for me as those lung mets are all across in all lobes.. The only hope for me is laser surgery in Germany which treats many people coming from Canada and US too who were told no surgery option.. That or back to CAPIRI + Cetuxi which would probably work for sometime, but I just hate hate hate being nausseated and in bed all the time while on chemo. This is no life for me.. What good is it to problong life for 6 months if those 6 months are spent in bed.. But on the other hand a lot of people were in the same boat as me and got to surgery with SOC so even if chemo does not cure you if it gets you to resection it is worth while so I must start thinking this way, if not too late alredy (last scan in dec showed some progression on lung mets but also something happening in peritoneum with some large lymph nodes increase)..

Hi Tomaz26,

I am on 5FU (which is the IV form of the pill your taking) and Avastin/Leucovorin maintenance chemo, I get it all via IV. I chose not to do the pills anymore because it is way to toxic, taste nasty and I find myself skipping because I am in control. I think all the natural stuff is a croc of shit and waste of time (no offense to anyone taken it). I use to drink tree leaves from a guanabana tree thinking I would get to cure, everyone without cancer thinks they know how to cure cancer with natural.

Rich people like Black Panther Actor died, Steve Jobs, etc...from Cancer and they had all the money in the world to try all the natural stuff because that stuff is expensive and not covered by insurance, that is why most people are hesitant to do natural, although there is no statical evidence that is really cured people.

I don't want to have people lose hope that is on natural stuff, bottom line stage 4 cancer is hard to beat, but beatable with conventional medicine or you die from it. It's what I have to face and understand at this point in my life, I just want to enjoy my time with my loved ones, work hard to make more money so there comfortable when I am gone, or pray something comes out to cure cancer.

Rikimaroo

[claudine]

As I did not have PET CT done before, only regular CT at the time of DX, those lung mets could be there already

Maybe, but my husband's many small lung mets were found on regular CT scan; they were too small to "light up" on the PET he had not long before. He had 18 cycles of Folfiri/Avastin and so far so good, they're calcified/gone/stable (it's been two+ years since last chemo).

On the other hand I had better quality of life and no surgeries and this is also why I choose W&W in the first place. At 41 years it matters

Absolutely! And "woulda coulda shoulda" isn't going to help anyhow. I often wonder "what if DH had gone to the doctor as soon as his back started hurting? What if he'd had a PET early last year instead of December?", etc. But what is done is done and the best is to move forward with as much strength and positivity as one can muster (I know, easy for me to say, I'm the caregiver, not the patient...). Wishing you much luck and courage with the a path forward - keep us posted.

[Tomaz26]

Yeah, the "problem" in my case is that DX CT was done in june 2020 and PET scan was done in september 2021! This is 15 months. In september 2021 the largest met was 10mm. I really think there is a big chance that in june 2020 it was not there yet, but then I was treated for 6 months until end of 2020 and it could have spread during that time too. Mine was EMVI+ at DX which as I later learned has very bad prognosis.. It has already invaded the main portal vein or something like that which means it had access to other parts of the body already at that time... This is why I think there is at least 50% chance that surgery would not help with lung mets, but still I would have at least rectal surgery solved. Although mine would have been reversed a few months later which means not a lot of tissue would be taken and always a chance that it could recur on some different spot that time in rectum too.. Like you said, doesnt matter and not worth mullin over as it is what it is

[stu]

We found out about my mum’s lung met seven years after diagnosis. It had been visible at 2mm two years before but then started doubling in value !
Some people here traveled to Dr Drew’s in Germany for laser surgery on lung mets . Their posts should still be here if you use the search function . Just a thought !
Stu

[Tomaz26]

Wooohooo, Congrats !!!! So all that supplements and off label drugs are working after all!

What do you think made a biggest difference? I think artemisenin has most research behind it..

I hope to get same results mid of april - CT scan.