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Stage IV Seeking Answers....

Tigerman
Posts: 7
Joined: Apr 2009

What do I have to look forward to? Has anyone else had a similar diagnosis?

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

HI Tigerman, and welcome to the world of 'semi-colons'.

If you scroll down a tiny bit, you'll see 'Semi-Colon roll call'. You can read the dx of many of the people here. Most seem to be Stage IV and most are doing great. Many are NED (no evidence of disease) after many years.

Also, if you click on each picture, you can read about our journey. Mine is still a new journey and Stage III.

Ask questions, join in the threads, take a deep breath and make a friend!

God Bless,
Diane

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Yes, I'm stage IV dx 8/07, but I don't know anything about your dx to know if they are similar. In the last 20 mos I've had 5 surgeries, 5wks of liver radiation and constant chemo (except for surgery breaks). I also live a good quality of life. I've had good news and bad news along the way. My mets are in the liver and celiac lymph nodes. All stage iv's are NOT created equally.

Where are your mets? Are they operable? What is your treatment plan? Do you have colon or rectal canzer? We are all so individual and so are our diseases. If you can give us more detail we'll be able to help more. We like the long version, I guess - LOL.

Kimby

Tigerman
Posts: 7
Joined: Apr 2009

Hi, thank you for the reply.

As of now I have bilateral metastasis in the Lungs, Lymph system, pressing on nerves on pelvis. Hasn't gone to any other major organs. Was managing fine, despite a little cough, but now trouble walking. More scans, and biopsy today. Still awaiting treatment.

Thank you

-Stan

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

Hey Tigerman... welcome to the board! Hehehe... you are a man of few words... unfortunately, you are going to have to tell us a lot more about your diagnosis before we can even begin to tell you what sorts of things you can potentially expect. Even then, none of us are fortune-tellers so we won't be able to tell you exactly what things you will experience on your personal journey.

There are sooooo many factors to any stage diagnosis and, although some of us are old hats and have been through a lot over the last X years, we all are still learning new things about it every day. No two people's reactions are going to be the same.

So, let us know where you are at. How long ago were you diagnosed? Have you had any surgeries? Have you consulted with an oncologist and if so, what is her/his recommendation for treatment for your particular situation? The more you can tell us about your diagnosis and what the short-term plan is, the more people can jump in and let you know if they had this treatment and how it was for them.

Hugggggs,

Cheryl

PhillieG's picture
PhillieG
Posts: 4869
Joined: May 2005

You have a lot to look forward to.

More info would help a lot. What's been affected? Liver, lungs, nodes. I've been living with stage IV colon cancer for over 5 years. It's been a rough road at times but it beats the alternative. Some people have 1 or 2 operations and they're done. I've had 5 and still have it to a minor degree. There is a wide spectrum of outcomes. Some people have those ostomy bags for a short time, some for a long time and some not at all (me for one), Tell us more when you can.
Do get a good team around you and get second opinions too.
my advice
-p

jenalynet's picture
jenalynet
Posts: 363
Joined: Nov 2005

Hi,
I'm Stage 4 and now on Folfri chemo with Avastin. I had mets to the liver when first diagnosed and had liver surgery to help with that, then 8 Folfox treatments. The cancer then spread to my lung so I had lung resect for the one nodule. The cancer then spread to lungs, liver, sternum, and lymphnodes quickly. I was diagnosed in Oct. 2005 but I am still ticking. Everyone is different so this is just a little about my cancer. I keep fighting the fight and will as long as my quality of life is okay...Hugs to you, Audrey.

rayjay
Posts: 5
Joined: Apr 2007

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.

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

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's picture
PhillieG
Posts: 4869
Joined: May 2005

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

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

: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

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Tigerman,

I'm another stage IV. You still have lots to look forward to- I've been able to do most of what I used to do (certainly not every day, but MOST days). You will be okay!
It definitely won't be an easy road, but you WILL get through it. I've been dealing with treatments off and on for a year and eight months now and just found out last week that my cancer is now inactive (most tumors gone, just some left in the lungs, but they're small and inactive)- nothing lights up on my PET scan anymore, and I'm cheering about that! Next week I start "maintenance" treatment. I can handle that! There is hope, my friend!

That's just to let you know that stage IV patients are surviving longer and longer these days. Definitely DO NOT believe the stage IV survival statistics you read online. All statistics are outdated because to be a statistic, the people had to have been diagnosed and treated at least 5 or more years ago. Back then, some of the newer treatments and drugs we have now didn't exist then. So, we have way more advantages then they had even five years ago. That's also true of antinausea drugs. Anytime I felt nausea, the drugs they gave me would do the trick. If you can get Emend, definitely ask for it- it's a life saver. Everyone is different of course, but I've only thrown up three different times from chemo related nausea in a year and eight months- not bad.

Thinking of you in prayer,
Lisa

Tigerman
Posts: 7
Joined: Apr 2009

Thank you everyone for the prayers, and encouragement. I had a biopsy today. My lungs didn't collapsed, so that was a plus. I'm still waiting for results, but everyone seems to be sure that it's originated from the stage 3 that I had 5 years ago. I think I'm kind of a text book case. Docs gave me a patch to wear, to ease the pain from bone mets. Feeling better already. They also lent me a walker to use until my bones get stronger. I sure hope that I'll be able to return that soon.
I've also been given a supplement for bones, I think that it's similar to what is used to help people with osteoporosis. I get
to go home tomorrow for a bit, until they decide on a course of treatment.

Thanks again,
Tigerman

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