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Stage 4, Metastic to lungs

gdavis
Posts: 4
Joined: Sep 2005

Hi my name is Gary,
I ws diagnosed Oct 2004 with stage 3 colon cancer. I had chemo and radiation for two months and then Colon Resect Jan21, 2005. It had broken thru the colon and was in 4 lymphnodes. I have a permanent colostomy. I am 45 years old. I then started chemo again in march and finished in June. I had a full body scan and they discovered a mass in my mid lobe of my lung on one side, they said that was all they found and I was preparing for surgery. Then they did another scan and the new radiologist says I have almost in detectable spots in all modules of both lungs. They then declared me inoperable. I have now started a regimen of Avastan and 5FLU. This first round will be over end of October. My Oncologist (who I have placed great trust) says even if they can clear the one lung with microscopic spots it will not make me elgible for surgery on the other lung. Has anyone dealt with this situation and do you know of anyone who was able to recieve the surgery when one lung went into remission and was clear. Also the DR is not saying much about my odds. Does anyone have any ideas of life expectancy at my stage. And when do I start going down hill? Because othe than the chemo I feel pretty good. I certainly dont feel like I am dying in the next 17-24months as most web sites suggest.
Thanks for your input and response.
Gary Davis

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Kudos to your doctor for not talking about your "odds". I personally feel that is very damaging, unless they are going to tell you it from the "glass is half full" point of view. I am not in your situation. I had two mets to the right lung that were removed last October. I have scans coming up in the next few weeks. So far so good. But I can tell you that nobody's cancer is the same. Some respond great and some do not. You just have to take control of the mind over matter and I would suggest not looking around for news about your so called odds. Those statistics are based on the average colon cancer patient. As you know, they are mostly much older than we are. My age is 35! If you are in otherwise good health, that improves your odds even more. Besides, all of those stats are out of date. There are new drugs coming along the pike all the time. Avastin did not exist when I was diagnosed, and I have never been on it. Same w/ Erubitux. Just try to focus on your healing. If you do not agree w/ the surgical plan, or lack thereof, I suggest you get a second opinion. Where are you being treated BTW? I know it is scary, but you are healthy! Right? The only difference is that you KNOW that you have these nodules. Have you made any major dietary changes in your life? Now might be a good time to research everything that you can do in your power to fight your cancer. For example, diet, supplements, exercise, and so forth.
Keep your chin up! I know, easier said than done,
Susan.

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Hi Gary,

Thanks for coming to these boards. I think you will find (as most of us have) that they are a great place to just talk to people and get opinions and support. I'm very sorry to hear of your recent upgrade to 4.

I was going to type much of what Susan said in her post. It used to scare me to death when I would come across statistics. Now, I ignore the statistics completely and only focus on the knowledge. No matter how much we trust our doctors, in areas of death they can only give us their best guess and we often hope they are wrong. You and your state of mind have just as much if not more to do with your outcome than what the doctor says. Does that mean that if someone is fighting with everything they have that they are never going to die? Definitely not. What I'm saying is that death is a huge mystery and statistics are only that. Cancer doesn't necessarily mean that you have a death sentence. So, please, try not to focus on your "odds" and focus instead on changes you can make in your life to increase your standard of life and life expectancy and focus on getting through treatments with minimal side effects and getting better. I agree with Susan; kudos to your doctor for not talking about your "odds".

There is some great advice in there in regards to diet and lifestyle changes. Make your body an environment in which cancer does not thrive in through diet and lifestyle changes.

Please come back as often as you like/need to. If you are interested in making these changes, there are some very knowledgeable people one these boards in regard to nutrition and some excellent books out there to get you started.

Take care,

Patricia

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Hi Gary,

I was dx Feb 2004 with stage IV rectal cancer (2 mets to my liver and 1 to my left lung). I was told surgery was not an option at the time so I did chemo (Oxiliplatin, Luecovorin, 5FU, and Avastin). While on chemo, I started researching and learning more about diet and alternative treatment options.

After 8 months of chemo and having found a local naturopathic doctor, I chose to stop chemo. It had worked the first 4-5 months and the tumors did shrink, but then everything plateaued. At the time the chemo was really getting to me and I made a conscious decision that it wasn't really about quanity of life anymore, it was about quality of life. If I was going to die, I wanted to at least enjoy and remember every single second of it and I could not do that while on the chemo. I completely changed to an entirely natural/organic diet, juicing, and taking some vitamin, mineral, and herbal natural supplements in Nov. 2004. I stayed with my oncologists and he stayed with me too. I was very fortunate with that, not all docs would have stunk with me. My CT scans and other testing slowly got better and better and in July, I got my first NED report. ALL WITHOUT ANY SURGERIES!!!!!!!!!!

Since then we have done a flex sig for where the original rectal tumor was with about a dozen biopsis. All came back negative, the damn thing was completely gone. The tumor in my lung is gone as is one of the two in my liver. The other one in my liver now looks like fatty tissue and should be gone soon.

What I am trying to tell you is that not being able to cut it all out does not mean you are going to die. I sincerly thought it did and now have to keep pinching myself to make sure I am not dreaming.

Help your body fight the ******* cells, eat healthy and start doing some homework on the clinical values of foods. If you are really brave, find a naturopathic or homeopathic doctor you are comfortable with if you can. Today there are so many things you can do to help your body fight cancer and it doesn't always have to be surgery, chemo, and/or radiation. You can compliment them.

The best of luck to you and let me know if I can help you in any way.

Lisa P.

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

yeah scouty and I'll bet you were pretty stinky too when you were detoxing!! since your docs may not have "stunk" with you....... ;-)

Gary, this gal has quite the testimony. I hope you will try this route.

peace, emily

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

Gary, I was Dx with stage IV colon cancer in feb 04 with liver mets. I also had spots in my lungs they were not sure of. I dod FOL-FOX with Avastin and things shrunk. After operation and liver/colon resection in Sept 04 and 6 motre onths of chemo, I found out in April 05 I do ahve lung mets. I am on Erbitux and CPT11 now and the mets are shrinking. I agree, STAY OFF THE INTERNET, it's too depressing and the data is usually outdated. Keep positive (I'm 48)
-phil

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

Hi Gary,
I was diagnosed with mets to lungs last Dec. I had multiple small spots. The way my oncologist and the oncologist i went to for a second opinion at Dana Farber in Boston explained it to me was that once you show multiple spots the chances that there are more cancer cells lurking that can't even be seen yet are much higher and this make surgery a poor option. It puts your body through significant stress with no guarantee that all would be remmoved. Surgery is only an option for one or 2 larger tumors. At least that's how they explained it to me. Made sense to me.

Regarding the statistics...I have NEVER asked my onc what my odds were/are. I just assume I am going to beat this! Original dx at age 47. Now age 49 and still going strong!
Mary

jana11
Posts: 708
Joined: May 2004

Hi Gary, I was stage 3 rectal cancer diag 10/02 at age 32yrs. I am now stage 4 with my second incidence of lung mets. My first one was a single met in the right lung. Now, the hilar lymph nodes on my right lung are all lighting up on the PET scan. I was going to have my entire right lung removed, but we need to see if the cancer will respond to chemo first. I also have a small left lung met.

I get all my care at MD Anderson in Houston. If you need a second opinion, go to a major cancer center: in New York, Boston, or Houston.

They told me if all my cancer responds, I will get my lung removed for a goal of cure. You gotta fight the good fight. Do NOT get overwhelmed with statistics, even if you have 99% of death, that means that 1 in 100 people will live!! You could be that one. The stats don't apply to us. We are young and healthy.

I just started CPT11, erbitux and will start avastin in a few weeks. I am hoping to get my lung chopped up soon.

Let me know if you have any other questions. jana

gdavis
Posts: 4
Joined: Sep 2005

Thanks for your input.
I am learning every day more and more about this battle. My treatment is being done in Houston. My doctor was a MD Anderson doctor for a long time. He wanted to offer more personal care 10 years ago and moved to Park Plaza down the street. I live in the MED Center in Houston so it literally is a few blocks to treatment, the hospital etc... Now I was told by a patient who had brain surgery from the same DR that Lance Armstrong used in Indiana that he was told to use my oncologist (the patient lives in texas) as he was the best in Houston. So that made me feel real good. I dont question his expertise. I belive in him thus far. But I am looking to LIVE! If that means there are other ways to accomplish that I want to make sure I have explored them all. What I don't want to do is spend the rest of my life on chemo. But I am GREATLY encouraged by the stories I have heard in just one day on this board. Thanks to all of you! I am in the Battle, ready to fight, and dying to WIN!

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Gary -

I was diagnosed in June 2005 with Stage IV colon cancer with one met to the liver. The first thing I learned was to ignore those statistics. As many have said, much of that data on the net is outdated - e.g. pre-Avastin for example. And, being just averages across very large populations it has nothing to do with you (or me) personally.

The healthy thing to do is ignore that data - please consider it just data and not actual information! There are many Stage IV survivors on this board. They are giving me hope and I hope you can be hopeful because of them also. As my oncologist says "The textbook on colon cancer needs re-writing - it's a whole new world now compared to even a few years ago." So, please try to be hopeful and realize that these days there is good reason to be hopeful.

Gary, I hope you will visit this board often as you fight this nasty disease.

Betsy

taraHK
Posts: 1961
Joined: Aug 2003

Just want to add my voice to others regarding those damn statistics. First of all, any stats we read or hear are already out of date. There have been huge changes in chemo medications during the past few years. Second, whenever I come across a statistic, I think -- well, someone has to be the one to beat the odds (be the x% who survives) -- why not me?!

And why not you as well. Wishing you all the best in your battle. It is great that you are feeling so well. I know what you mean.
Tara

VonnieKai
Posts: 30
Joined: Nov 2003

Hi Gary
My husband was diagnosed with lung mets in October 2003. At the time, although the oncologist didn't give us his odds, I think the doctor thought my husband wouldn't have much more than a year. Of course, that was two years ago now and the oncologist is always amazed at how well my husband is doing. He has been on Erbitux for almost 18 months and he also takes Xeloda. His mets are "stable" at present and he has no symptoms from them. His oncologist is adamant about no surgery - this came up when a small liver met appeared and I wondered if it could be removed. I think there are some surgeons who will operate and remove some tumors knowing they won't get all the cancer. Others, like my husband's Onc, take the position that it's too hard on the patient to operate and still leave growths. In my huband's case, he's 74 and has other chronic conditions (diabetes, HBP, kidney failure, arthritis)so that position makes some sense to me for my husband. Like everyone says, the odds are pointless.
Vonnie

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Gary,

I hope you have gotten some reassurance from the others that you are not alone in your situation and that others with similar diagnosis are doing very well. Please just "believe" that you are going to beat any odds someone throws your way.

Stay Strong,

Kay

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

I'm stage 4, CRC, mets to lungs since Dec 2003. Finished chemo May 2004-(Folfox) tried IMRT-(targeted radiation) and a Vaccine study without measurable results. The stats say the 5 year survival rate for me is zero. I'm planning on being the exception. Presently considering back surgery and putting off further cancer tx until then. My CEA is increasing and cancer is growing-keep us advised RE Avastin/5fu tx. Bud

gdavis
Posts: 4
Joined: Sep 2005

Good to hear from you. You are 1 year out, how is your health otherwise. Do you feel you are wasting away or are you able to keep your strength up? In my case I feel healthier than I have been in 3-5 years, other than the effect of the chemo. I am not losing weight. I am able to eat pretty good. The first day or two after chemo nothing tast good. But them in 2-3 days I start eating again. I am trying to figure out the signs of when I have went over the hill,,, what are the signs that my time is getting close. Do I just kill over one day, do I start going down hill quickly and in a month I am dead.
By the way I plan on living. This board has been helpful as I am going to now explore diets options. My biggest problem is that I travel every week I work and not sure how that can work Juicing. But I am going to look into it.
Keep me posted new freind. I am there for you.
Gary

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Gary, it's me again.

*****WARNING****** Due to the nature of death this gets very graphic******************

Ok, everyone is telling you to ignore the stats. I did that at the beginning but now that I am 4 years out I love them cuz I am BEATING them bloody!!!

I think I had something like a 30% chance of living. If I did the chemo I think it went up to 60% or something.

But I decided against the chemo. I was Stage 3 lymph pos zero mets sigmoid colon cancer. Successful resection. Only 2 out of 19 lymph involvement. No bag. thank God.

So my dilemma was to find something to cure the cancer that did not involve any chemo. No one in my family ever lived after chemo and the cancer finally got them. My sister died when she was 33 of intestinal cancer and I watched her agonizing slow death.

You have asked what you can expect from dying of colon cancer. Well, obviously everyone is different. We all head into death differently due to our strengths and weaknesses, our faith life, our body's ability to sustain life or not.

But I can tell you my experience from watching my sister. It is not pretty. Not one bit.

She was dx'ed with stage 4 adenocarcinoma of the small intestine. It had adhered to the main artery that fed the small intestine so complete removal was out of the question. Her onc told her she could live a lifetime in 5 years. that was his way of giving her a time frame. She got busy with her job and tried to live fully. But the tumor continued to grow and she tried some alternatives. But in her case it was too little too late. She made an attempt but gave up on it. It was so hard for her to break her dietary habits. Coke, sugary foods, chocolates, Pop Tarts, white pasta......

The she got pregnant. The Happy Part. :-)

She had a healthy baby girl and then after her birth continued to slide down the slippery slope towards death. But it had peaks too. One day she wouldn't be able to get out of bed and the next she was asking me to take her shopping. She cried out in pain often as she floated around in her pool. She got so skinny and yellowed (jaundiced) that people stared at her in public--she looked like a walking cadaver sometimes.

She lost control of her bowels and had to wear Depends. Her hair fell out in chunks. Her bones stuck out so much that it hurt to be in any position in bed. She did more chemo and it only got worse. Her eyes bugged out and her teeth jutted out of her mouth the skin was drawn so tightly over her skull. She had absolutely no muscle left whatsoever. Her abdomen filled up with fluid so it looked like she was 9 months pregnant. This has something to do with the tumor. She would get it drained off only for it to fill up again.

When she finally did die she looked like a 95 year old woman and was only 33.

When she went into the hospital catatonic at the end there was blood coming out of her orifices. She was shaking violently.

I tell you this because you are curious about dying from colon cancer and I want to give it to you straight. This is only one experience.

I understand why you are thinking about this. I think we all do. you are brave enough to ask and want to discuss it. I know when I was dx'ed many thoughts about death and dying went through my mind. Especially since I watched with horror my sister's death. Her release into God's Arms was such a relief.

I hope this gives you a glimpse into why I feel such a passion for health and healing that does not include chemo.

Sometimes one must make choices that are radical in order to live. If you must travel so much and feel you cannot lug a Juicer with you is there any way you can take a leave of absence from work?

Or can you attend an alternative clinic for a few weeks to jumpstart a program of healing and curing? there ARE juicing clinics.

So to answer your question if you will just keel over one day-- Well, we all will one day. Hopefully when we are little old ladies and little old men!

peace, emily

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