Stage IV Seeking Answers....

rayjay said:

Stage 4 metastasized to both lungs
My wife was diagnosed with stage 3 rectal cancer in Oct. 07, followed by chemo and radiation with the resection done middle of Jan. 08. This was followed by 4 1/2 months of chemo with ileostomy reversal in Aug 08.
January 09 we were told everything looked good, but in March we are now told it has metastasized to both lungs, is inoperable and there is no cure.
April 14th we start chemo again on 5FU plus Avastin, and we're told they'll do more scanning in 3 months to see if it is working.
Avastin is just a new chem in our chemo centre so there isn't much history yet around here.
As for what to expect, we were told to think years rather than months, in most cases. No expansion on that info though.
I'm having a hard time trying to keep the wife thinking positive and hopefully this thread can give me some ideas.

Mets to both lungs
Hey Rayjay!

In some ways, I'm in the same boat as your wife... I was dx'd with colon cancer (not rectal) in Dec/09, and went through all the various treatments (surgery, radiation, chemo, etc), only to find that it metastacized to my adrenal gland and both lungs. The adrenal gland, we dealt with by having it taken out.

Now I still have the nodules scattered throughout both lungs that we are keeping an eye on. Once you are dx'd as Stage IV, that very scary word "incurable" is attached to the diagnosis. Just that one word alone is enough to depress the strongest of people, let alone ruin one's positive thinking. BUT, the fact your wife's doctors have told her to think in years rather than months is a wonderful sign! It may not seem like it since that word "incurable" is the only word that she is probably dwelling on, but you tell her, it's just a word. And as a word, break it down:

IN - CURE - ABLE

AKA we all have the ABLE'ity to CURE from withIN

Now, when I was told my cancer had metastasized from the colon to the adrenal and lungs, I was given the 2 months - 2 years talk and that the prognosis was NOT good. But, once they removed the adrenal gland (and there was no lymph nodes in the area affected), and the nodules in the lungs have proven to be extremely slow growing... then all of a sudden the mood in the onc's office changed. I'm still considered Stage IV, I'm still considered "incurable", but all of a sudden there's no talk of 2 months - 2 years. As a matter of fact, I have not been on any chemo since Oct 07, which means I have gone 17 1/2 months without chemo. I did have 12 nodules, of which one of them got to be 17-19mm. We had that one ablated with the RFA procedure this past January, so it's gone. Now I have 11 very small nodules in my lungs, but like I say, they are growing soooo slowly, if at all. There's no point in going on chemo at this stage because the idea of the chemo would be to shrink them to the size they are now and keep them stable at that size. So, I will get another scan in 4 months to see if any have started to grow and if they have, we will deal with that one or two at that time... if a bunch of them are showing signs of growing, then we will treat them with chemo to bring them back down. If need be, we shall go on "maintenance" chemo to keep them stable. Or maybe if only one or two grow, we'll ablate them once they get to be a certain size.

In other words, there are options... and a lot of time it's a matter of wait and see. But the big question... physically how does she feel? If she feels great, then this can go on for years!! Compare it to a disease like Diabetes or AIDS. Nasty diseases, both of them, and they can have some serious complications or death if they aren't treated. Well, our lung mets are the same thing... if left to their own devices, the outcome would be nasty... but if monitored and treated when needed, then the idea is to keep them under control or stable. In all the years ahead, while we remain stable, they may come up with a lung met drug and voila, a cure! Which than would take away that label "incurable".

Have your wife come to the boards... there are oodles of us Stage IV types here And although Avastin may be a new med for the chemo centre she is going to, it is a common one in other areas and has lots of good reports for shrinking tumours. Tell your wife she is not alone, and that a lot of us are doing just fine!

Hugggggs,

Cheryl

PhillieG said:

Erbitux
Rayjay, there is also a drug called Erbitux that I have been on since spring/summer of 2005 and while I still have some mets in my lungs I used to have them in both lungs. I have been living a decent life because of drugs like Avastin and Erbitux. The thing I feel I have to do is to stay one or two steps ahead of the stupid cancer, then I'll be OK. More and more people are living with cancer. It's become a chronic illness instead of...you know.
There is hope and the ability to cure from within or some nonsense that some members
of this forum like to post :-)
Cheryl always has a lot of great info and attitude too.
Be well,
phil

:::smacking::: Phil!!
:P'''' Phil!!

Nonsense, indeed!! But hey, if we all stay 1 to 2 steps ahead of the monster, then the monster will always be 1 to 2 steps behind us and that's where he/she should remain

Hugggggs,

Cheryl