Chemo no longer working maybe

Hey Deb
Like Winter, I've been trying to think how to respond without giving the old "Oh, don't worry... everything will work out fine" when, whether it will or not, that is not how you are feeling right now so you don't need that kind of patronizing tone. On the other hand, you certainly don't need "Oh, dear... well that sucks, doesn't it?" tone either.

In some ways... we are in a bit of a similar situation right now. I am on Irinotecan (no combo at the moment) because the Xeloda stopped working for me. My onc won't put me back on FOLFOX because the Oxy did so much neuropathy/nerve damage that she says the risks outweigh the benefits. My CEA has been a very good indicator for me and when things are stable, I have a nice low reading of 1.0 - 2.0 and that remains steady. Well, last spring it started showing an upward trend... very slow, but still, it was going up rather than staying where my normal is. That's when I went on the Xeloda which worked great for 3 months... CEA went down and I had a 33% shrinkage on the nodules in my lungs. But from Sep - Dec, for whatever reason, it stopped working. CEA started going up and a few of the nodules started growing again. So, I too took a break over Christmas and because my onc wanted to make sure the chemo was gone from my body before we started the new chemo (Irinotecan). When I started the Irinotecan on Feb 7.... my CEA was 9.0, which is high for me when the norm is 1.0. After the first treatment of Irinotecan, we did another CEA test and it was 25.0! YIKES! So I know how you are feeling when there's a big jump that you weren't expecting!

Now, just reading over what you wrote.... you've been on the Irinotecan/Vectibix since April of last year and things seemed to be going well until December when you took a break over Christmas. While not on chemo, the CEA took a big jump. The scan you had showed some shrinkage and some growth. Well, that kind of makes sense. Since you had been on chemo, it obviously was affecting the tumours, hence the shrinkage, but when you stopped the chemo, some of the tumours took advantage and started growing since there was no chemo stopping them. Those tumours that had started to grow might be enough growth to affect the CEA and push it up. I know it doesn't take much growth spurts in mine and the CEA indicates a rise because it is very sensitive.

Am I correct in assuming you are back on the Irinotecan/Vectibix combo after having the break over Christmas? If so, then that makes perfect sense that your onc wants another scan in a month because if your CEA rises when you aren't on chemo, but if in another month of being on chemo your CEA starts going down AND the CT shows shrinkage, especially in the tumours that had started to grow... then this gives him/her a good picture of the Irinotecan/Vectibix is actually a good combo for you.

So I wouldn't jump on the "oh oh we are running out of options" yet. Totally understandable how easy it is to let our minds go that way, but I personally don't think you are close to that wagon yet First your onc is going to want to know just how effective this combo of chemo is for you. If it isn't doing as good or effective of a job as he/she would like to see it doing, then he/she will change your doses. It's amazing how you can be on the same chemo, it doesn't seem to be working, and they just change the doses, or schedule on how often you get it and voila, it's like a whole new chemo.

I think the danger with our imaginations is, we get this plan set in our heads. We are going to start a chemo and then it is going to follow this pattern so we can almost quote from week to week how well we are doing. When the reality is it doesn't follow that plan we set up, then we immediately think the worst... and we can justify to ourselves and everyone else why this is the worst thing that could possibly have happened. Although our imaginations are the wonderful, creative parts of our beings... sometimes they can be our worst enemies

Soooo... the tough part for you right now is going to be the waiting... the waiting for the CAT scan in a month, and then the waiting for the results of that CAT scan, not to mention getting the CEA results and if they don't come down, you are going to want to beat your self with worry. This is where we have to draw on our strengths of patience. If the CEA comes back as still trending upwards, remember, it could be ONE silly solitary little tumour that is causing the upward trend and not the others. It could even mean, there is a new nodule/tumour that shows up that you didn't know about and it is the rogue that is causing the rise... and it may be one that is very easily removed by an RFA procedure, or maybe it will respond to the chemo, it just needs time.

It can be sooooo many things and all of them might be very easily managed. When my CEA jumped to 25, I also heard from my Kidney specialist on the same day and he passed on the information that the RFA radiologist doesn't think I'm eligible for the RFA procedure in removing a tumour in my kidney. I, of course, immediately thought.... WAAAAAAHHH! Everything is going against me! I sent a panicky email to my onc (who is out of the country for 2 weeks) and she calmed me down in an email she sent from China ... saying she knows I'm disappointed about the CEA being that high and not to worry about the kidney tumour... she will follow up with the kidney doc and we'll get a plan in place for how we get rid of that tumour, when she comes back. In other words, business as usual... carry on!

So that's the words of advice I give you too. No matter how it "looks" or how you perceive it to be... there are probably a whole heap of things to still try and work on... don't let your imagination get the better of you

Cheryl

another possible option
Hi Deb,

I know the scary feeling you're experiencing- I've lived it a few times. I've "used up" all the mainline chemos already myself & I could not find a clinical trial that I qualified for either. My dx was 3-1/2 yrs ago in 8/07- I was stage IV at that time already, but even though I'm still needing more chemo & even though I've run through all the mainline chemos that are FDA approved for this type of cancer, my cancer in all this time has not spread beyond where it was originally found in (liver and lungs). Although it is still there, I am funcitoning pretty well & still all the normal "mom" things that I need to do in life.
I just wanted to tell you what I am on. I am currently on a combo of Gemzar (gemcitabine), 5FU, and Avastin. I have been on it for a year now & am due to get scanned this week on Thursday. So that will give me my latest status. As of my last scan in November, everything was holding its own- no disease progression, but nothing has lessened either. My onc likened my current treatment to a "dam wall, holding things back". Of course, I'd love to find a treatment that will get rid of everything, but keeping things from progressing or going anywhere else works for me too.
I am on this current treatment based on a recommendation to my onc by Dr. Lenz at Norris Cancer Center at USC in L.A. Have your onc look into it.

My insurance did deny it at first (actually twice) because although it's FDA approved for cancer, it's not approved for colorectal. So, it was after the 2nd denial that I applied to the California State Dept of Managed Care & started that process & my insurance amazingly reversed their decision and also reimbursed me for my out of pocket (we paid cash for 3 treatments of it). They have continued to cover it to this day. I am hopeful that it might even set precedent for any other "offline" chemos I may have to get if I need to change and still can't qualify for a clinical trial.
I'd be happy to share more specific info with you via a PM- just let me know.

Never give up!!!!
Lisa