The Colon Club

Hi Gina, I'm a caregiver for my mom stage 4 crc and our story seems to be very similar to yours. We also had liver resection and first post op ct scan showed 3 new tiny liver mets. It was decided to do 3 cycles of xelox + avastin and then RFA them but scans after chemo was clear so there is nothing to rfa or operate so another 4 cycles and everithing was still clear. Tomorrow we will have ct scan 9 month from beeing ned hope it will come back clear but I'm not sure whats next as mom is still on chemo and struggling with side effects she does not want to be chemo for life. Sorry for my eng

I made the mistake of not posting here and starting other threads about specific issues so a quick recap:

Kemeny gave the ok to stop chemo in Dec after 3 consecutive clean scans.

Then a questionable scan in March, a trip to Hawaii, and a small met confirmed in April. Dr K talked about one chemo and then ablation, but later decided 4 chemo, a scan, then ablation.

Thanks to WBC I was able to do 2 5FU + Vectibix and 2 Vectibix alone.

Had an MRI and a PET today. Both appear clear! Waiting to hear from MSK what that means: the ablation may not be possible if nothing is visible, and then it seems like we are back to playing a game of Whack a Mole, as this is exactly what happened last time.

I’ve been reading about Signaterra tests. My NW onc said not as helpful for someone like me for whom CEA is very sensitive. But could it be used here to determine if I need to do additional chemo vs break and monitor?

I know it’s ridiculously optimistic but I still feel like I will be well again - just a question of when!

I know it’s ridiculously optimistic but I still feel like I will be well again - just a question of when!

I wouldn't call it "ridiculously optimistic", Gina! From many stories I've read, here and in other forums, many folks have to keep hacking away at the beast before it finally succumbs. Look at Stu's mom, she had some recurrences but is now out of the woods. I can totally understand that you'd want it over with now, for good, but I'd say clear scans is great news! Enjoy your summer!

Happy to see this update Gina!

Finally heard from Dr Kemeny’s office: no ablation, continue chemo.

My oncologist at NW had a different perspective: 6 week break, labs after 3 weeks, then a scan. Most likely something would recur, and then ablation or resection would be on the table again.

After my last recurrence, I think I did 8 chemo cycles after my first clean scan. And I still recurred. So is there reason to believe that THIS time the chemo will wipe it all out?

I have labs Monday at 8 and a telemedicine conversation with Dr K at 9. Depending on what she shares as context for her reco, I’ll need to make a to-chemo-or-not decision after that. Hopefully my head will be clearer after this weekend.

Damn, Gina, you have had a LOT of chemo. It would be so great to be done with it for a good long stretch, if not permanently!

boxhill wrote:Damn, Gina, you have had a LOT of chemo. It would be so great to be done with it for a good long stretch, if not permanently!

Ha, I know! I’m above 30 rounds now.

Kemeny’s take was that my response to chemo has been so unexpectedly good that she thinks a chance 4 more rounds will wipe it out completely. So I did one yesterday, 3 to go. Then we will stop and see what happens.

Wondering if I go all out this round: diet, acupuncture, supplements, everything I possibly can to knock this out once and for all. But still stay sane!!

ginabeewell wrote:

boxhill wrote:Damn, Gina, you have had a LOT of chemo. It would be so great to be done with it for a good long stretch, if not permanently!

Ha, I know! I’m above 30 rounds now.

Kemeny’s take was that my response to chemo has been so unexpectedly good that she thinks a chance 4 more rounds will wipe it out completely. So I did one yesterday, 3 to go. Then we will stop and see what happens.

Wondering if I go all out this round: diet, acupuncture, supplements, everything I possibly can to knock this out once and for all. But still stay sane!!

Are you able to still stay on schedule with Folfiri? All of mine are delayed at least one week due to low platelets. Also had one case of neutropenia. Not sure if there's anything I can do for the platelets.

Nor Cal wrote:
Are you able to still stay on schedule with Folfiri? All of mine are delayed at least one week due to low platelets. Also had one case of neutropenia. Not sure if there's anything I can do for the platelets.

I took neulasta when I was on FOLFIRI which helped, but I had a tough time tolerating it. So we dropped it after 8 cycled and I have done my last few without irinotecan and with just 5FU and Vectibix. I’ve done all kinds of combos and it seems like Vectibix is the magic drug for me; works better than irinotecan. (I did 4 FOLFIRI, 4 FOLFIRI + Vectibix, 4 5FU + Vectibix - and after seeing all the results Dr K and I agreed it seems to be the last combo that works best at the lowest toxicity.)

I should add that lately I’ve had to alternate full cycles with Vectibix only because my WBC is low and they don’t want my body to be dependent on neulasta.

And yeah, I’ve had low platelets and not much you can do about that but wait. I tried slamming juices etc to no avail!!

I've been neglecting updating this thread for a while, posting instead on separate threads that are more specific to what I am going through.

My latest update (already shared) is that my June 2022 scan picked up a spot where I had radiation this past November, so I am headed next week to MSK for an ablation.

I've also taken my Facebook support group and converted it into a live blog, so that it can be read / accessed by anyone. I recently added a page that shares the bare bones of my diagnosis and treatment to make it easier to follow all the specifics, and it can be found here:

https://www.weareallmadeofstars.net/col ... nt-journey

Monday’s ablation was successful - yay!!

Got the official biopsy report today: both the tumor cite and margin around it (10mm) were negative for malignancy. And the PET scan directly after was clear, too - will rescan in a month, but I’m feeling really optimistic.

With my blog now live, I’m starting to want to post links to updates I think may really resonate, and I have a doozy from last night. Of course feeling good about the result, but with spiking liver enzymes, I am back on pump steroids, and man… has it been messing with me!

If misery loves company, please be my guest! LOL

https://www.weareallmadeofstars.net/pos ... -star-save

(Earlier posts give more detail on the ablation - including a pregnancy scare - which may also be of interest, and cause yourself to ask why there hasn’t been a cancer-focused dramedy out there yet? Because I think this past week and a half gave us at least three episodes!)