Cetuximab plus Irinotecan

[lagarto]

Cetuximab plus Irinotecan

After 3 rounds of chemo including the Relay 4008 study, I will now start this ...anyone know the longest anyone has been able to be on it? I have 2 tumors 1cm ea, one live and 1 peritoneal..

[Thedruid]

Hello, Lagarto

I finalized 8 cycles of Irinotecan + Cetuximab a month ago. I had 2 mets, being one of 8mm and another of 6mm in both lungs + 3 VERY enlarged lymph nodes with high activity + cancer growing along the scar of a wedge surgery I made to remove a met in the left lung in 2022. The lymph nodes were placed in different parts of the body.

After 8 cycles all cancer sites were cleared / reduced. Lymph nodes returned to their normal size and no more metabolic activity was found anywhere by the PET scan. Mets reduced 50%+ in size. The PET scan result said I had a complete response to treatment. During treatment the Onc was planning to extend it to 12 cycles since the initial exams were not as good as the final one.

In the recent past I made some research and found different interesting cases. In one of them (I can not remember exactly where ) a peson said her grandmother stayed on Cetuximab-only regimen for 10 months and had a lot of reduction in all mets.

The link below shows in "case 2" a very sucessful response of 12 cycles of Folfiri+ Cetux and then only Cetux. The patient reached CR ( I believe it stands for Complete Response). The page says "Moreover, under continuous cetuximab therapy, metastatic rectal cancer kept CR for an extremely long time (over 7 years)"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8888900/

Regading side effects, I can tell you for me it is generally more tolerable than Folfox, but watch out for the rash. It is really anoying and exposure to the sun or not taking good care of your skin as recommended is not a good idea at all. As I said above, I stopped the treatment a month ago and skin rash is still present.

I hope you get a good result with the treatment. Let me know if you have any questions.

[lagarto]

Thank you!!

[lagarto]

Well I'm ready for round 3 this week. It is better than folfox , I do have a mild rash but not too bothersome. Causing a low wbc count- only once before in 3 years-tired, seems to drag out longer than other 2 meds before, little appetite, mild nausea. They -local group-wanted to put me on Lonsurf thinking my tumors had mutated, but they didn't also because I insisted ( I heard) that Lonsurf was "last resort" med and Moffitt wanted the present med. I wish Relay Therapeutics would release rly-4008..it worked until they lowered the dose from 70mg to 40..I think 50 would have continued to work and ir was tolerable.
I will post my CT exam results in s few weeks. Wouldn't it be nice if this continued to work for several years.

[lagarto]

One more thing, just venting I guess Here's my history:

1. 2021 stage 3b colon cancer in outside of my colon on 1 lymph node. Put on folfox for 6 mo.redults: all cancer gone.

2. 6 mo later: stage 4, 1 x 2.5cm tumor on liver + tiny bb like scattered all over peritoneum. Put on folfuri for 4 treatments, protein I'd done, meanwhile all cancer gone 50%. Suggested to do a pill study at Moffitt.

3. Last 24 mo, relay pills, 70 mg. After 10 mo. 2.5 cm tumor down to .4 cm, peritoneum clear. Tumor markers all normal.

4. Last 2 mo moffitt med dropped to 40mg, as it was affecting vision in one eye, fluid buildup. After2 mo, a .5 cm tumor appeared on my left peritoneum area, liver tumor increased to 1 cm. Ejected out of the program because "my cancer came back". Back to local cancer center, on present meds.

My question is, is it fair to say that I am on my 3rd drug treatment, insinuating that the first 2 didn't work? I reminded my oncologist that when I finished folfox and it came back, he said we can always go back on it, it obviously works, yours just comes back quickly" And when I left for Mofgit, he said the folfuri was working so if I come back we can use it or the folfox. When I reminded him of this, he didn't remember apparently and said we had to do a third new med since I've already had 3 others. Don't know what to think- any opinions?

[jts]

Hi,
I'm sorry about your situation.. That sounds like a real roller-coaster ride. I am not well informed about these specialized treatments you are talking about, so I apologize that my response it too basic.

Yes, sounds to me like you are on your third or fourth type of treatment, depending on whether or not you count the study:
1. adjuvant folfox
2. folfiri
3. Moffitt pill study
4. Cetuximab plus Irinotecan - what you are starting now

No, I would not say that your previous treatments did not work. If a treatment stops your tumors from growing, or even better, shrinks them, then it is working. That is a positive response.

The question is why your oncologist wants to try something new, when you had a good response to folfiri? I really can't say. But the expectation is that all of these drugs will stop working eventually. Some people will switch back and forth between them to manage the disease. So it is reasonable that your oncologist would want to see if you respond to something else.

Can I ask, how did they detect your peritoneal tumors? I have always heard that those do not show up in scans.

Why do they not resect or ablate your liver tumor?

[lagarto]

Thanks...both places said that the peritoneum looked like a handful of BBs were scattered throughout it on the ct scan originally. The last scan I saw, and I could not see any sign in the peritoneum and the radiologist reported only a 5mm tumor in the upper right peritoneum and the liver tumor went from 4mm to 10mm (originally 25mm)..my local oncologist said the peritoneum had them scattered, just too small to see on the ct scan (?). Both places said removing the liver tumor was pointless since it was all over the peritoneum, and every med so far shrinks it..moffit thought it might have gone completely at 4mm, maybe its now just scar tissue, but then it came back.
Thank you for your positive opinion about the meds, maybe switching around will ultimately give lots of years, it has yet to mutate or adapt apparently, just comes back quickly..FGFR2..

[beach sunrise]

Second, maybe third outside opinion away from where you are treated now.
I always have second opinions by docs in the best different box I can find.
Let us know!

[lagarto]

Any suggestions for the rash? Itches like crazy on my chest!!

[Green Tea]

Some skin rash resources

Skin rash creams etc.

Also:
https://www.weareallmadeofstars.net/vectibix-how-to

[Green Tea]

. ... Don't know what to think- any opinions?

I'm sorry to hear that you have been on such a chemo roller-coaster for so long.

I don't have any direct experience with Erbitux (cetuximab) or with any of the other treatments especially designed for RAS-wildtype tumors, but I do have a suggestion:

You could download the 2-page document in the link below, print it out, and study it thoroughly. This document contains a summary of all of the 19 FDA-approved primary medications currently used in treating colorectal cancer -- including all of the so-called "last-resort" meds. Note: Combination regimens like FOLFOX, FOLFIRI, FOLFIRINOX, etc., are made up by combining two or more of the 19 primary medications on the list

By studying this document you can become better prepared to have discussions with your doctors about treatment possibilities for the future. Be sure to pay attention to the footnotes at the bottom of the table because they identify the main restrictions on use of these drugs. Also you need to know your MSI-status (MSS or MSI-H) in some cases

FDA-APPROVED COLORECTAL CANCER TREATMENTS, May 2024
https://www.empr.com/wp-content/uploads/sites/7/2024/05/FDA-Approved-Colorectal-Cancer-Treatments-r0524.pdf

[Thedruid]

Any suggestions for the rash? Itches like crazy on my chest!!

Hello, Lagarto

I am sorry for taking along time to answer. I did not connect to the forum fo a while.

I also had a lot of itching during my treatment, but mostly on the face. To be honest, it felt like some itching mixed with sunburn.

When I had such itching I used A LOT for cream. Some sites with information about Cetux said we should use cream at least twice a day. I used it 8-10 times a day.

For the worst days I also used some mid-potent steroid cream (Mometasone furoate cream, 0.1%) - but for this one, please check with your doctor. Constant usage is not recommended.

And do not forget the Doxiciclin. It really looks like it helps. Are you using it ?

My best wishes,
TheDruid