Stage IV colon cancer

We need PhillieG! Calling Phil....
Paula,

Yes, there are several here stage IV past the 5 yr mark. I'm only 21 mos past diagnosis and still in treatment. I posted to you on the Colon Club and as I said there (and I'm sure they're tired of hearing here): It is my doctors job to get me 5 years. By then, technology can get me 5 more and 10 will get you 20 every time! There is hope. Right now your husband does not feel hopeful, but this is new and scary. Hope will return, but it may take him a little time.

Your husband needs a new doctor. If the doctors whole goal is to keep him alive for 5 years, how can he ever reach 10? Everything in "the book" says I won't even make it close to 5 years and 'cure' is near 0%. My onc team talks cure and works toward cure. That is very important to me. I know the stats and so do they. Maybe I'll be the one to prove the stats wrong. Why not me? My teams attitude helps to fuel mine. I'm not saying what the outcome will ultimately be, because I don't know. I do know that I can never achieve what I'm not trying to achieve!

Ronna Fay Jevne, Ph. D says:

"Hoping is denying the statistics. Reaching beyond the traditional. Keeping open the possibility of being the exception. Hoping is listening to the unconscious. Having dreams in the world of sleep and having dreams in the world of the conscious. Wondering if there are miracles. Being fascinated with the little miracles: the words that heal; the memories that let us forget.

Hoping is having passion for life. Noticing life. Wanting life. Inching toward life. Being willing to embrace life despite the risks. Hoping is recognizing that death is not the enemy – never living is."

Help your husband to LIVE the life that he has. None of us really know when our time is. But, there IS hope.

Hugs,

Kimby

I'm here too
Hi Paula,

Sorry you are here but I think you will be glad you logged in!!! Click on my picture and you can read my complete history. Briefly I was dxed stage IV with mets to my liver and one lung March 2004. I was given the ole 2-3 years to live speech and surgery was not an option scaring me badly. I did 8 months of folfox with avastin (chemo cocktail) until my bod couldn't talk it anymore. I stopped and started loads of things (what most call alternatives) to 1) attack the tumors and 2) boost my immmune system so it could fight the **** cells. I was on disablity and had the time and money (luckily) to completely change my diet to an all organic/natural one. I juiced, I took supplements, I drank stuff that didn't look very appealing or taste very good. I was on a 90/10 alkaline diet (google chemical ph balance of foods if you are interested in what that is) and basically worked fulltime taking care of me for a change.

I heard the wonderful word NED (no evidence of disease) almost a year later and "God willing" I will be celebrating my 5 year cancer free mark at Colon Palooza 7 in Key West October 24th later this year.

There are many stage IV survivors here. The longest one we have is Foxy, a woman in New Zealand who is in her 12th year!!!! I hope you hear the amazing story of others, there are some awesome ones like Phil's.

I am going to bump another thread so you can read about other long term survivors too (over 100 of them). The thread is called "Semi-Colon Roll Call".

You have come to a wonderful place with people that know exactly what YOU and your husband will be going thru.

Let me know if I can help in any way.

Lisa P.

PhillieG said:

I have :-) (right on cue)
Stage IV, 5 years, still in treatment, still work a full week. I still have some mets in my lung(s) and have never been NED. I kayak, swim, play guitar, enjoy my wife and kids. Pretty much live my "new normal" life. I did have extensive liver mets and had 60-70% of my liver removed back in Sept 04. I had to have a follow up operation due to a bowel obstruction, and I've had 3 lung operations. Also over 180 rounds of chemo.

I don't know if this is cheering you up at the moment but if you were to look at me, you'd never guess I am where I am and what I've been through. Yes, sometimes it really sucks hard in soft places but it's the hand I've been dealt in life at the moment. It's not a death sentence by any means and any one of us can be killed on our way home tonight.

Every year they come out with new drugs that keep me (and others) ahead of the cancer. I am on Erbitux for the lungs now, I've been on Avastin. 10 years ago they were not around, now they are and who knows what is on the horizon. I feel that a doctor should not say what he said to your husband. Maybe he'll outlive the doctor...

This site is good when it stays on topic of fighting/dealing with cancer. I hope I gave some hope and some reality of MY situation. We are all different.
I wish you both the best.
-phil

Help!
Dear Phil (and all other members, sorry am new here...).

I am desperate to get a second opinion on my mother who has colon cancer (no mets to liver, lungs). She has gone downhill after a third surgery, and I feel the 'team' has given up hope on her (there are problems between the surgeon and the oncologist, who do not communicate). She has just started Cetuximab. She is hospitalised on parenteral nutrition.

I would very much like to get a second opinion in the US. I don't know where to go. What can people here recommend please?

Many thanks

Anne

AnneS said:

Help!
Dear Phil (and all other members, sorry am new here...).

I am desperate to get a second opinion on my mother who has colon cancer (no mets to liver, lungs). She has gone downhill after a third surgery, and I feel the 'team' has given up hope on her (there are problems between the surgeon and the oncologist, who do not communicate). She has just started Cetuximab. She is hospitalised on parenteral nutrition.

I would very much like to get a second opinion in the US. I don't know where to go. What can people here recommend please?

Many thanks

Anne

My Advice
Hi Anne,
I'm sorry to hear your Mom has colon cancer. Being a Dad to 2 young boys I can understand how it must feel to have a parent with cancer.

It is REALLY not good that her surgeon and oncologist do not communicate, it's vital that everyone is on the same page. I am fortunate to be able to go to Sloan Kettering in New York City. They are one of the best if not the best cancer facility in the US, maybe the world. How easy is it for you to get to the US?

One other thing, I have been on Cetuximab (Erbitux) for 3 years, it's helped a lot. There are side effects that are not the best, more cosmetic with me than physical ones. If you search the board you can find out more about the side effects but you need to get your Mom a good team of doctors. Too often some of them have BIG egos and they won't help each other out. Please keep us posted Anne.

I hope others can give their opinions on this topic for Anne.
-p

AnneS said:

Thank you Phil for your
Thank you Phil for your lovely post. It made me cry.

I am extremely upset about the care she is currently receiving (I am a veterinarian). The surgeon has a massive ego. She had her third surgery on March 23. The cancer had gone into a lymph node and the surgeon was not able to remove the capsule of the node (which exploded in size over a period of three months). She was fit/well in March still. A combination of dehydration/malnutrition has knocked the wind out of her.

They started Cetuximab on Monday and she had a massive response, so they had to stop half way through (they successfully manage to give the rest the next day). I have been sleeping at the hospital to keep an eye on her. Then yesterday, as I had planned to spend the night at home to recover a bit, I helped her to the bathroom, and next I know she has blood spurting from her abdominal incision. The emergency Dr was contacted (took her a good 30 mins to get to my mum's room). Both the oncologist and the surgeon were contacted (the oncologist curtly referred it to the surgeon, and the surgeon dismissed that it could be an infection (the emergency Dr nevertheless did a swap); he didn't bother showing. I stayed the night, and monitored her vital signs myself: totally stable.

I am besides myself at this point, and just unable to think clearly. I just have no confidence in this team anymore, and really feel they have let my mother down badly.

Totally possible to travel to the US, money is not a problem. The problem will be for me to 1) travel with her presently (she would have to take her parenteral fluids with her. Ideally I would like her to be a bit stronger before we travel.

I am just hoping they don't manage to kill her before then.

Thanks again.

Anne

Good Grief Anne
You're making me cry now...
I'm so sorry for what your Mom is having to go through. I do not see how people like that can be allowed to be doctors. The scene you describe is horrific.

When I was first Dx 5 years ago, my insurance did not cover Sloan Kettering but I had an "in" there so I got to have consultations with a very good Oncologist there. The Onc I had through my then insurance plan was willing to take a back seat and let the Onc from SK take the lead. Luckily, I later was able to change insurance and all and have been treated at SK ever since.

Are there other family or friends who can help you make decisions at all? I had my brother act as my advocate because myself nor my wife could really think straight about all of that at the time.

She certainly should get her strength up before you try any type of trip.
{{{hugs}}}
-phil

CherylHutch said:

Hugggggs!
Anne... I am appalled at reading your story with your mom. There is always a bad apple in every bunch, but that is not fair that you have managed to get two rotten apples and they happen to be your Mom's current team. Is there no Board of Physicians or some body/board that monitors unacceptable practice or behaviour amongst professionals that you can report these two to and demand proper care for your mother? It's been a real eye opener for me in my own country to learn that medical care differs from small town to city... even amongst the different provinces and to me, that is not acceptable.

I sure hope that you can get your mom out of the care of these so-called doctors and get her a new team... at the same time I'm hoping these two doctors do not get away with what they've put you through. I realize, at this time, you don't have the energy to fight that battle as well... so just save your energy to focus on your mom. She is so lucky to have you there to fight for her. Do you have any other siblings or family members that can help you out with the emotional toll this is taking on you??

Huggggggs,

Cheryl

Hi Cheryl and Phil,Thank
Hi Cheryl and Phil,

Thank you for your heart warming posts.

I am extremely close to my mum - always have been. I do not have any siblings, my father died when I was 19. There is no other family (to speak off). We are an expat family, so I moved from my home country in Denmark to Belgium - an expat community that is always on the move, nver poermanent = I have no friends here, myself having traveled extensively.

The surgeon came the next day to change the necessary drain/bandages. He came back later on to check on her: he was so aggressive, it was not funny.

It is clear that he is still upset with me for having him 'replaced' with the medical oncologist. Common sense should have told him to HAND over the patient to oncology. So I had to intervene and request that the oncologist be put in primary charge. It defies logic though that you can have a highflying career/education, yet the mental state of a three year old. It isn't about him, it is about the patient, my mother.

Bottomline: he doesn't think there is a hope in hell (when he was still in charge of the case two weeks ago when she was re-admitted to hospital post-op, he gave her 3-6 months to live if the chemo didn't work, then a couple of days later he changed it to 1-2 years if we could resolve the mechanical problem. Now it seems like he thinks death is imminent).

I spoke to the oncologists, and they basically told me to ignore him and his opinions. They would never have started her on Cetuximab if they did not think there was a glimmer of hope. But the situation is dire as she could die of complications at any moment (i.e. one of mets 'arms' is on to the aorta).

I told my mum everything (except the imminent risks of sudden death), because she wants to know. She absolutely HATES when the drs act as if they have state secrets they are trying to protect, but their whole body language says something quite clearly: you are dying. (I am speaking re the surgeon here). This way of 'communicating' causes a lot of anguish.

The oncologist, all the nurses (who are wonderful) and myself are rooting for her.

We were going to get a second opinion but it all just went SO fast now, we just didn't have the time. I have an appointment with a University Professor next Wednesday.

How does one cope with all of this stress? And yes, Cheryl, I cannot believe how variable cancer care is. That is is the 'draw of the luck' if you end up with the right team or not.

Anne

AnneS said:

Hi Cheryl and Phil,Thank
Hi Cheryl and Phil,

Thank you for your heart warming posts.

I am extremely close to my mum - always have been. I do not have any siblings, my father died when I was 19. There is no other family (to speak off). We are an expat family, so I moved from my home country in Denmark to Belgium - an expat community that is always on the move, nver poermanent = I have no friends here, myself having traveled extensively.

The surgeon came the next day to change the necessary drain/bandages. He came back later on to check on her: he was so aggressive, it was not funny.

It is clear that he is still upset with me for having him 'replaced' with the medical oncologist. Common sense should have told him to HAND over the patient to oncology. So I had to intervene and request that the oncologist be put in primary charge. It defies logic though that you can have a highflying career/education, yet the mental state of a three year old. It isn't about him, it is about the patient, my mother.

Bottomline: he doesn't think there is a hope in hell (when he was still in charge of the case two weeks ago when she was re-admitted to hospital post-op, he gave her 3-6 months to live if the chemo didn't work, then a couple of days later he changed it to 1-2 years if we could resolve the mechanical problem. Now it seems like he thinks death is imminent).

I spoke to the oncologists, and they basically told me to ignore him and his opinions. They would never have started her on Cetuximab if they did not think there was a glimmer of hope. But the situation is dire as she could die of complications at any moment (i.e. one of mets 'arms' is on to the aorta).

I told my mum everything (except the imminent risks of sudden death), because she wants to know. She absolutely HATES when the drs act as if they have state secrets they are trying to protect, but their whole body language says something quite clearly: you are dying. (I am speaking re the surgeon here). This way of 'communicating' causes a lot of anguish.

The oncologist, all the nurses (who are wonderful) and myself are rooting for her.

We were going to get a second opinion but it all just went SO fast now, we just didn't have the time. I have an appointment with a University Professor next Wednesday.

How does one cope with all of this stress? And yes, Cheryl, I cannot believe how variable cancer care is. That is is the 'draw of the luck' if you end up with the right team or not.

Anne

Way to Go!!!
Anne, you "grabbed the bull by the horns" as we say in America. That means that you took charge of the situation and got your Mom's previous 'Dr' replaced with the medical oncologist. He'll get over it. Some Doctors (and people) have such GIANT egos and all they think about is themselves and not the patients.

The stress...There are many ways to handle stress, everything from Meditation to Medication. Myself, I do a little of both, probably a little more medication but I try to get out in nature and kayak or swim and walk in the woods. It grounds me. The medications help a lot (for me) because there is a lot of stress that comes with HAVING cancer so I take a few things to help me cope better. I also see a therapist. (man...I'm more screwed up than I thought!) So as you see, there are many ways to handle it, no right or wrong way I feel. I think the only BAD thing you could do is to do nothing at all. Then it can bottle up inside and that is not a healthy thing to do.


I am glad that you "found us" and we found you. I hope all goes well with your Mom's next visit. Please keep us posted.
-phil

Budcman said:

Stage IV colon cancer
Paula G,
I am also a stage IV colon cancer survior. I just joined today.
I was diagnosed in mid 2001. I also had part of the large intestine removed. Later that yr.(2001) I had my first scans. They found a deeply embedded tumor in my liver. In Feb. 2002 I had a liver ablation surgery, which burned it out with RF energy. I feel that helped me get ahead of the trying to kill it with the traditional chemo therapy. I was on 5-FU, CPT-11, Leucovorin etc. for yrs. Finally they came out with Avastin and my Dr. started on me as soon as possible. I think Ive been on just bout every kind of drug there is sometimes. ha.. but Im still here.
I have somewhat of a goofy personality, so I was always joking around; even with the Dr. and nurses. My Dr. later said my attitude probably did as much as the drugs to keep me going and helping..
So keep your chin up. Ive been doing this for almost 8 yrs now.. and still going..

Im sure your husband is getting periodically CEA testing.. that is a good way to tell outside of scans to see how he is doing..

So keep on Truckin'..

Bud, you da man
Welcome aboard. I think one has to laugh or find humor along with the tumors.
Yea, it sucks but look at you old timer,here since your 2001 dx. I was a 2004 dx and if I didn't laugh at myself and my situation I wouldn't have gotten as far as I have.
Seriosity killed the cat they say.
-phil