Erbitecan or Irinotux?

[BrownBagger]

Trying to figure out what to call my current maintenance chemo cocktail of Erbitux and Irinotecan. I guess in keeping with convention, it should be either Erbiri or Irinoerb, but I don't like either one as well as the ones in the title.

My onc says I'm looking at 12 rounds of the stuff. So far I've had four with minimal side effects. From the Erb I've got a rash pretty much confined to my chest, while I haven't had any nausea from the Irinotecan for a few weeks, so I've either figured out how to handle it, or it's not an issue. And, one of them is drying out my skin.

Can I expect increased side effects as I move forward through treatment, or does that fact that I'm doing fine after 4 rounds bode well for the remaining eight?

[NedPlease]

Irinoerbi rolls off my tongue the best. I have no experience for any heads up info.
BB, I follow you closely with your lung mets, no chemo, lungs mets, chemo....
When you're up to it, I'd be interested in why no chemo with the first lung recurrence. Not judging, just interested because a cancer twin of mine is not doing chemo for his second recurrence (nor did he for the first) and I'm slogging along doing Xeloda. I know. I know. Can I live with the decision not to have done it if a recurrence? Obviously, I can't and he can. We're a local case study of two. Always searching for the right decision when there's no way to know what's right. Tough spot we're all in. Best of luck.
FYI-My husband is an avid mountain biker and we both admire your fortitude. You do make me look bad as I'm lying on the couch while you ride a thousand miles.

[Gaelen]

I think I'd just call it Erbitux + Irinotecan. Dr. Personality tends to cook up personalized dosing regimens that don't always fit into established "cocktail" names. And she does modify them as you go along (which is how I realized I was on less than 1/4 the dose of her standard HAI pump + systemic regimen.

Erbitux is the one causing the dryness. For me, after 8-10 weekly rounds of Erbitux + 5FU, I developed - not a rash, exactlyn but dry, itchy skin around my mouth/nose (think extreme chapped lips), crusty eyes, vision cganges and extremely dry/itchy scalp. I think you'll see progression of some eymptoms. But which ones? No way to say.

[Gaelen]

Sorry about the typos - gotta stop posting from my phone!

[BrownBagger]

just interested because a cancer twin of mine is not doing chemo for his second recurrence (nor did he for the first) and I'm slogging along doing Xeloda.

My first lung met was kind of an odd duck--it grew 2 mm in about 15 months and nothing else popped up, and it didn't really show the kind of uptake on the PET scan that you would expect from a tumor. But that's what it turned out to be when we did the needle biopsy. My local onc concluded that in the absence of any further recurrence, removing the tumor through surgery would probably be sufficient, and that sounded good to me. Unfortunately, I had two more, faster-growing mets pop up on my next post-op scan, so obviously chemo would have been a good idea. But that's just the way it goes. Hard to predict what this disease will do, and I understand why my doc didn't want to subject me to unnecessary chemo.

The dry skin can be treated fairly successfully with lotion, but I'm just glad I'm getting this stuff in the humid summer months rather than in the dead of a cold, cold winter. My skin hurts when the weather is like that--without chemo. I have noticed a bit more tendency for my nasal passages to get sore, which I assume is what you're talking about, Gaelen. Most notably, it happens when I ride my bike.

[Gaelen]

Actually, BB, until you mentioned the nasal passages, I'd forgotten about them. The chapping I'm talking about is around mouth and nose, visible. I had to cancel an interview at a food event because I didn't feel I could interview chefs while I looked like I had a contagious disease, so did the interview over the phone.

The inside of my nose - the nasal passages - did get very dry. Bloody noses, etc. I tried saline spray but hated that. Breathing in warm mist was more tolerable, as was putting a hot washcloth over nose/mouth, using Cetaphil to clean my face, and using Aveeno facial moisturizer on the scaly, chapped areas.

[CheeseHead]

I'd go for Erbitecan myself, as you can nicely stress the final syllable (Er-bi-te-CAN) if you want to use it in a pejorative sense... just in case you'd want to some day

Hope it does the job regardless of its name...

Cheers,
Cheese

[Bev G]

How 'bout just calling it "BITE ME"? (that shares a fair number of the same letters, I think)

[juliej]

Dr. Personality tends to cook up personalized dosing regimens that don't always fit into established "cocktail" names.

Maybe Bev is right and BB's custom formula needs a custom name.... BiteMe or KickAss. I always enjoy reading the names that old apothecaries and traveling medicine shows used for their medicinal products -- Bile Beans, Wine of Tar, Snake Oil Liniment. How about "Nodes-B-Gone"?

Whatever the name, I'm rooting hard for you.

[Laurettas]

I don't know, I am having a difficult time deciding between your first two choices. I guess I would go with Erbitecan. It has a better look somehow!

Also, Eric, I have a somewhat OT question. After my husband didn't respond at all to Erbitux even after determining that he was KRAS wild, I did a little research. It turns out the they think that BRAF mutation is also an indicator of the effectiveness of Erbitux. If you have a BRAF mutation, this one study says that Erbitux doesn't work. I was just wondering if you were tested for the BRAF mutation. I don't think that Jake was tested for that.

[BrownBagger]

I was just wondering if you were tested for the BRAF mutation.

I don't know. I didn't know that I was tested for the KRAS mutation until my doc said I was wild and could take the Erb. You'd think the ins. co. would want to know that, since they're the ones footing the bill for that very expensive stuff. I have heard that if you don't get an outbreak, it's probably not working--though opinions vary about whether the severity of the reaction is a significant indicator. I did ask my onc about that and she said that it's not, because everyone responds differently to the rash treatment meds (Minocycline), so a minimal rash isn't necessarily an indication that it's not working very well.

In my case, the only way we would know it wasn't working would be if I had another recurrence during treatment. Hopefully not--during treatment or afterward.

[Laurettas]

Here's a link in case you want to bring it up to your onc:

http://jco.ascopubs.org/content/26/35/5705.short

I know what you mean about the insurance company but ours didn't ask as far as I know. And this is not new information. The article was published in 2008. One would think the insurance companies would be up on that fact by now!

I don't know if that's the reason that Erbitux didn't work for my husband. Might bring that up to his onc and see if he should be tested for that mutation when looking for future treatment options.

As far as the rash goes, my husband had a fairly substantial rash and I read about a KRAS mutant who had a horrible rash. So, in those two cases, rash was not an indication of anything.

Just wanted to give you a heads up about the limitations of Erbitux before you dealt with too many months of the side effects. I know one fellow that it has worked great for but it has its limitations and the BRAF mutation would be an easy one to check out.

[Jackandkatiesmommy]

Eric
I found that the Irintican caused very dry skin for me. Not in patches, but all over. I found myself using lotion a couple times a day. It never got worse but since I have been off chemo for surgery it has resolved.

Cynthia

[juliej]

For what it's worth (I'm not taking Erbitux), I was tested for KRAS and BRAF mutations at my original diagnosis. I tested negative for both mutations, which means I can take Erbitux if needed. BB, the test results would have been in your original pathology report.

In the notes on the test results it said, "For patients whose tumor is positive for a KRAS mutation, treatment with anti-EGFR monoclonal antibody therapy is not recommended based on Provisional Clinical Opinion issued by the American Society for Clinical Oncology. There is also evidence that mutations in BRAF predict for lack of response to these drugs."

[edgellc]

I'd go for Erbitecan myself, as you can nicely stress the final syllable (Er-bi-te-CAN)

I believe i will have to ride in the car with Cheese on this one. Erbitecan sounds a bit like a Carribean Island to me.
So in theory you could take your treatment, close your eyes and drift off to a warm sandy shore in front of deep blue waters with some Rum in a hollowed out coconut shell with a lil umbrella and a straw........Aghhhhhhh the good life. Good luck with the new cocktail.