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my husband's colon cancer recurred and a new kind of fight starts

choihe
Posts: 10
Joined: Dec 2008

Hi,
I first visited this site in Dec. 2006 when my husband was first diagnosed with Stage 3 Colon cancer and found it very helpful. He had 2 surgeries, since then, 2 series of Chemo (24 times). We were beginning to think that we're getting handle of the disease. But, We just learned that it disease spread around abdomen, pelvis, and pelvic bone (& possible attack around spine as well). It does not look good.

The Doctor told us that they are not going to treat him aggressively, but rather, he will be going through 3 weeks interval Chemo and they will treat the disease as a Chronic, meaning that my husband will live with Chemo Treatment to contain it from further advancing of the disease. I reviewed his PET Scan result and the outlook seems pretty grim.

The new Chemo medication would be Avastin, Irionteen, & Xeloda. Rather than taking this Chemo via Pouch, it will be oral form of Xeloda this time.

Another concern I have is that I'm hearing Irionteen would give him a serious diarrhea and I'm afraid of the diarrhea effect more than anything else. As hard as they were the 2 series of Chemo Treatments he took, he managed to survive through (handle them well than others from what I've heard ...), I'm really concerned of this 3rd time around reinsurance of the disease. I don't think he can handle as well as he did since his body had already taking a lot.

I appreciate for any thoughts, advice from you all.

Amy

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi Amy, so sorry to hear of the reoccurance of your husbands cancer. I have been on the irronotecan and yes, diarrhea is a concern, but they gave me an infusion prior to the irronotecan each time and it seemed to control it pretty good. I was also encouraged to have plenty of immodiom on had. Be careful as I did pass out a couple of times and it was due to dehyderation. So to make it sound so bad, as it really wasn't, but just be careful. I have also been on Avastin for about 18 months total and had little or no problems with it. I have not been on Xeloda. I too am stage 4 cc and other then short breaks will need to be on some type of treatment to keep fighting. As much as I wish I could be off of it for good I do consider myself blessed that I can find treatments that might help me. I am currently on doing clinical trials and pray daily for drugs to be available. Best to you. Jean

choihe
Posts: 10
Joined: Dec 2008

Jean,

Thanks for your input.

Glad to hear the insights from someone who is going through the similar prognosis. I find your words encouraging as the treatment seems to be controllable for you. Do you know what kind of infusion that you took prior to taking irronotecan? My husband will be starting Chemo again Jan. 13th and I can probably ask the doctor if he could provide my husband the same thing to minimize diarrhea.

Also, would you mind sharing the clinical trials that you are doing?

Thanks again for sharing and encouragement!

Amy

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hi Amy,

I'm not sure if my .02 cents will help since we all are dealing with the same disease, but different situations... so again, everyone's mileage and response will vary.

I was diagnosed with colon cancer back in Dec 2006. I had the colon resection surgery plus heavy duty intravenous antibiotic treatments since I the tumour had perforatted the intestinal wall, which then caused major perotonitis (infection of the abdomen). After healing from that hospital stay/surgery, I did 8 months of FOLFOX and 6 weeks of daily radiation (which doing the 6 weeks of radiation, I was put on Xeloda instead of the FOLFOX, then back on the FOLFOX once the radiation was finished. I finished that chemo in Oct 2007 and although I was diagnosed as Stage IV, the mets in my lungs were very indolent and just were too darn lazy to grow (hey, I'll take lazy cancer any day!!!)... so they kept close watch on me, but I went for 2 1/2 years of NO chemo, NO treatments. Life was good. This spring, those indolent lung mets started to grow, so I was put on Xeloda (that is the pill form of 5FU that your husband is going to be giving a try.

Like me, it sounds like your husband has had a nice long break from his chemo (?) which is why his onc is probably going to try him on the Xeloda. Normally, our systems are pretty smart and if one chemo stops working, then they will try something else. Both the 5FU and the Xeloda are pretty much the same thing so if one doesn't work, chances are the other might not either, BUT if he's had a fair length of time not being on the 5FU, then there's a good chance your husband's system might see the Xeloda as being a new med. When I started it in June, it worked GREAT for 3 months. Seriously.... the largest of my mets in my lungs shrunk 33% in three months on the Xeloda!! We were ecstatic to say the least!! But this last 3 months (Sept - Dec) my system I guess figured out we were fooling it and the cancer stopped responding to the Xeloda, and two of the mets have started growing again. Still, it is worth having taken it because I'm still further ahead than I was last June, what with the 33% shrinkage.

So now, my onc is going to have me take the Irinotecan. This is a new chemo for me, so I have no idea how I'm going to react to it. I have been warned by my oncologist and some of the folk here on the board, that there is a good chance I will lose my hair. I know, I know... hair is just hair and no big deal... but it is a big deal for us gals if we have never gone through it before. So I'm taking this break time to prepare myself for this very strong possibility. Also, the other three side affects I've been warned could happen are the 1) diarrhea, 2) nausea and 3) fatigue. I didn't really have a problem with diarrhea or even too much in the way of fatigue while on the FOLFOX. At least, I don't remember having problems with either... and I was very much active with our theatre community and working 2 Broadway musicals while on the chemo, which is why I feel fatigue couldn't have been a major problem for me. I also don't remember too much in the way of nausea, although I do remember feeling it coming on and a couple of puffs of my neighbour's wacky tobaccy and I could feel it dissolve away and I never did actually vomit at any time. Sooooo, I'm hoping that since I did have it fairly easy with the FOLFOX, that I will have it fairly easy with the Irinotecan. But I will keep everyone's words of advice, such as watching out for dehydration.

I have not been on Avastin, but that is on the back burner should any of these not work out. My onc did mention that another one we might try down the road would be the Ertibux... but she is going to have me tested for the mutant KRAS gene now, so that we will know if Ertibux will be an option for me. Others can tell you more about that test, but something about if you have the gene, then Eribux won't work... but if you don't have it, then they have had good results with it.

It's interesting how different oncs will suggestion different treatments. For instance, you say your doctor told you that they are not going to treat your hubby aggressively. I'm not sure what he/she means by that. If they are throwing three chemos at him, it sounds like that's a pretty aggressive plan, no? My oncologist told me that we aren't anywhere close to being in "dire straights" (my words, not hers) and that right now we are going to try one at a time to see which one works for me... down the road we can try combos, but we still have options. So, the way I look at it, as long as they have options and have drugs/treatments to throw at us, then the plan is still fairly aggressive.

I know I questioned... well, why not go in and use RFA on all the mets (that's where they stick a needle in a tumour and zap it with radio frequency waves and toast it to scar tissue). Why keep giving us all these expensive chemos when they could go in and zap them one tumour at a time (or a couple at each session). But she explained that that is not necessarily the route to go because a lot of the mets are very small, and we want to keep them that way. If we were going to go in and zap a couple at a time (with a good 6-8 weeks healing time before doing another session), then it would mean not being on chemo before/after the sessions, so it might mean going a year or more without chemo.... and those mets waiting to be zapped would then be given free reign to grown. Not to mention, without chemo in your system, there could be new growth popping up anywhere. So when that was explained to me, I totally understood why what seems like an easy/simple procedure to rid one of the mets, is not as simple/easy as it first appears.

So, I don't think either of you have to think "grim" yet. Yes, it is wonderful when we just do our treatments and then they are over... and we hope over for good (or at least for a very very long time). But alas, that's not the nature of our beasts ;) The term "chronic disease" is just that... if we are going to have a chronic disease and have to deal with it on an ongoing basis, then so be it... we just have to adjust our psyche to accepting that we can still do what we enjoy doing in life, we just need to do it with ongoing medication or ongoing treatments :)

Keep us posted... I know I'll be really interested on how your hubby is doing and faring, since I'll be on one of the same chemos as he is.

Cheryl

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