question: what is the average time span of being NED?

[bradyr]

ok - I go in for my next round of imaging on friday. I'm in the middle of my 11th treatment right now (pump comes off tommrow).

So, as with most of you I'm a little nervious. the tumors on my liver are my biggest worry. 3 months ago, they were responding to the chemo - one was 1/2 size on 3/4 of size. But I don't expect them to be gone.

I've got an appointment with my radiation oncologist on tuesday. He did the radiation on the bone mets in my leg and arm and this is really just a follow up visit for that.

but if the imaging is ready (and my chemo oncologist scheduled the CT scan so it would be ready in time for my raditaion oncoloty appointment) then I'm going to ask him about RFA, SIRT spheres and whatever other treatment he thinks might be appropriate if there are still liasons.

Otherwise, I think my chemo oncologist thinks the chemo has done about al it can right now - my CEA is down to .8 two weeks ago. She thinks it's time to take a break on chemo.

so if the liver mets are still present, I'd like to do something else to try and get rid of them. I'd really like to be NED

So, wish me luck. It really helps to have this forum and you folks who are also going thru this to talk to.

[Lifes2short]

Folfox put my liver mets in remission for almost five months (actually, the liver mets weren't very active last scan, but the cancer has spread elsewhere).

Bradyr, it is possible that lesions will still show on your liver even if the cancer is dead. I just had a long phone conversation about this with my cancer surgeon friend. You might want to request a PET/CT if they are still seeing liver lesions. The PET scan will show whether there's any unusual metabolic activity still in the lesions. If the lesions are dead, you may not have to worry about RFA, spheres or anything - at least not for a good long time.

Ron, yours is an extraordinary story. But if fishing cured cancer I'd be one of the healthiest people on the planet!! My passion is flyfishing. I still get out whenever I get a chance, though it's much less than I did before cancer.

If sunshine and vitamin D were the answer, I'd never have become sick. Same goes for diet and exercise - I was always a health nut. It is clear that there are many others here who have always had healthy lifestyles.

And then there's Disco with another offensive hijack. Still blaming people for dying from cancer - yea Disco, they just didn't "get it". They're sheep just following their doctors' advice. They probably had bad diets or bad attitudes or continued to something "bad" to cause the cancer to keep growing. You obviously need to believe that those who succumb to the disease are stupid or ill-informed. Is that what you need to do to feel better about your own decisions? It must be painful to be so insecure. Stop insulting the many wonderful people who fought hard and fought smart but couldn't bet this thing. They are not to blame.

The Colon Club has lost several members recently. We've read some heartbreaking stories, often written by the victim's caregiver. We know that there are caregivers who still check in to this site after losing a loved one. How would it be for them to read your post saying that their loved one just didn't "get it".

Get it?

[Discoclub]

I am asking questions... I do not know what "IT" is. I am asking others what their "IT" was.

Still it appears there are some patients who do well, while others on the exact same regimen have a completely different outcome. Looking at this objectively it appears that the regimen is not the most significant factor. So what is???

Many feel that chemo, radiation/surgery is the gold standard.... Yet I can find No significant scientific evidence of this. If anyone does have any significant evidence I would certainly like to see it.

My mother did the traditional thing and has been "cured" for 14 years. Yet others who did the same thing died a few months later. A look into her lifestyle profile both before and after CA would indicate she should be dead. yet she is alive and CA free 14 yrs after treatment.

Other patients have had the exact same regimen and totally changed diet, relaxation, sleep habits, stress, vitamins, juicing, etc.. and did not have pleasant outcomes.

I and others canot seem to find this elusive "IT" that makes the difference.

Could it possibly be that we are programmed to die at a certain time and that no amount of treatment will stop it?

Could it be that some patients just have a "spontaneous remission"?? That is the claim place when a patient has a remission while using alternative therapy.

If so what causes some patients to have this "spontaneous remission" and would those patients have had the same remission regardless of their regimen? Could it be that some simply "willed" themselves to be better?
Could it be that some had larger prayer groups?? Or could it be that some found just the right balance of "Whatever" was missing in their lives/bodies and naturally healed?

What is the similarity and what is the difference is what I am asking.

I am hoping that patients who are healing will share and that patients who are not will ask why not.

[missjv]

it is hard to say why some make it and some die on the same drug regimin. some cancer cells are more aggressive then others and everyones body reacts differently to different drugs whether it is antibiotics or chemo. some peoples cancer is found so late that the cancer has taken over and chemo will only buy time. i think no one can really answer your question for sure. i still believe that a person has a better chance to survive or live longer by having chemo, radiation, and surgery. i had surgery and chemo and as of now i am fine. where would i be if i did not have either??? i don't know the answer to that question either. i can only guess that after 1 year of being diagnosed if i chose to do nothing i don't think i would be in good shape. who knows??? i think will power and attitude are a big help in beating this disease, but the people i know who are now ned have all done conventional medicine. i worked for a doctor who chose alternative medicine to fight her breast cancer and it did not work. the heavy doses of vitamins she was doing actually increased the cancer cells. she also drank some form of tree bark and some bach flower remedy. she lived miserably for 1 year after diagnosis and died leaving behind a toddler who i saw the other day at the ymca and i told her i used to work with her mother and she said i don't remember my mom i have a new mom which was very sad because she had a very good chance of surviving because her breast cancer was at a stage 2 when dianosed. so who knows why some live and some die??? i don't think anyone in the world can answer that one.

missjv

[Lifes2short]

I honestly think it's a combination of treatment, attitude and sheer luck. When I was first diagnosed with liver mets my onc gave me 6 - 20 months to live. That was 16 month ago and I'm certainly not anywhere near dead.

I am certain that I would be in very bad shape if I'd not had treatment. The chemo stopped my cancer for a while and gave me precious time. Time is all we have.

I have little kids. I need to stay around for them as long as I possibly can. I'm sure that my strong desire to live has helped me fight this thing. There has never been a day when I've wanted to give up. I think it would be different if not for the kids. Perhaps my will wouldn't be as strong. Likely my treatment decisions would have been different.

I still hope and pray to be one of the lucky ones. I know the odds are poor, but hope is a powerful thing. There are a lot of stories of people dying when they do not have hope. But there are also lots of very positive, strong people who still lose the battle.

[PammySue_51]

My opinion -- prayer, attitude, and treatment. I have hundreds of people praying for me every day for 11 long months now.

However, not everyone agrees about prayer. And...just because you have lots of people praying for you, it doesn't necessarily mean you will beat it. My feeling...only God knows when it is time to go.

Definitely...positive attitude and treatment. You can sit around and feel sorry for yourself or be thankful for each day.

There are no guarantees in life. We are just thankful for the good things and pray that the bad things will get better.

This sounds vague, but if we had the answer to these questions we could change the world.

Just my 2 cents.

Pam

[Discoclub]

Thanks for responding.

I am trying to be objective. I agree with what most of you are saying about surviving.

The link to survival appears to be something within the individual. I believe it is mostly willpower or a personal belief that heals.

Very likely the survivors upon DX begin a drastic change in many parts of their lives. That seems to be the true variable is the willingness to fight.

Possibly the removal of the lesion helps, Certainly there will be fewer active malignant cells in the blood stream. Perhaps this allows the immune system to overcome the remaining cells.

Perhaps chemo reduces the number of active malignant cells, Actually I am certain that it does... Just not too sure whether it harms as much as it helps in TOTAL survival?

And of course radiation kills everything in its path. Killing the malignancy lets the body's immune system off the hook for a while... But again at what cost to the healthy organs??

Could it be that the mere recognition of a symptom becomes the most important step in the healing process?

How many patients continue to live exactly the same lifestyle after DX as before? Could it be the patient is traveling quickly down the highway of their life...... Stressing, drinking, smoking, poor diets, poor sleep habits, sedate lifestyle consuming large qunatitites of sugars, alcohols, toxins etc..

Then suddenly,they are DX. They have just found out they have been traveling down the road in the wrong lane! What do you do? Go see ONCO first. Then.... LIFE CHANGES! Most of the postings on this forum are about how severe the life changes are for post DX patients.

Could it be that the sudden an usually complete changes to lifestyle are the ultimate curative agents? most ALL CA patients begin to EAT, SLEEP, Exercise, and stress in completely different patterns from before. These changes are what I believe constitute survival.

I do not believe we get cancer as a result of a nutritional deficiency of 5-FU or oxilalipitan or other chemo agents. Nor do I believe that having too much tissue causes cancer. And I am certain that in general we do not need to have an increased exposure of radiation to prevent cancer.

so what do we need to have to heal from cancer? That is the question we all should be asking. and why did we have it in the first place?

I am not putting down choices made by individuals to have traditional treatment.. I am asking if it is the ultimate curative agent for survival?

Stress, I believe is the causative agent. May of us stress over small things as well as large things. we stress and then we do not sleep, and then we do not eat. then we have an imbalance of GI fluids. then we start antacids then we stress cuz we have ulcers. Then we do not feel well enough for physical activity, which decreases the ability of our lymphatic system to function. Once we hit this place it seems impossible to change. We stress and we stress over being stressed with little ability to control what is happening to our lives. As humans we stress over many things. You know how stressed you were before DX and after DX.


Maybe the CA patient survivor begins to appreciate the value of their life when the days seem numbered and stresses that were once eating the insides of the patient and suppressing the patient's immune system are then reduced?

Maybe the DX is the patients sign.... that they are going down road the wrong way! the treatment then is the total reversal of what was wrong and the application of what is right?


Like it or not our lives change at DX, And I believe that recognizing these changes and following them is the ultimate key to survival.

[missjv]

i have another theory of why some people don't live through cancer and that is money and insurance. i hate to say it but i have known so many people on medicaid here in florida that have not gotten top notch care not for just cancer but other things. and there are many top notch cancer centers in america that will not even consider looking at you unless you are well insured or have alot of money to spend on treatments. it is a shame but thats the way it is. i am so lucky i have good insurance that paid for my treatments but i also pay a hell of alot of money every month to have the insurance and it is group insurance through work. i called a cancer center that is well known and said i had medicaid and the lady was nice up until that point and all of a sudden had another call she had to take. i felt bad for telling a little fib to the woman but i had to find out for sure if this was the case as i was told it was. it is a shame but money is a big factor for doctors. i guess you can't bring a chicken or a dozen eggs to the doc anymore like the old old days.

missjv

[Discoclub]

MissJv, Only the USA has the great medical engines running at full cost. Most other countries have some sort of protection for their citizens. Even China which spends on average under $27 per capita on health care has almost the same stats as the USA.

It appears that the stats tend to even out worldwide. Even the countries where there is little medical intervention available tend to about follow the norm. Of course one could also argue the relative diagnostic rate and the unknown diagnosis in many countries. But it appears that on average 1/3 of all known DX swuccumb prior to 5 years, regardless of how intense the treatment regimens are. 2/3 succumb prior to 10 year survival and approx 1/20 achieve 20+ survival.

What I think is interesting to view is recurrence rates. Regardless of regimen recurrence occurs in a large percentage of patients. Even after removal of lesions, multiple rounds of chemo, radiation etc.

It would appear Survival comes from within certain individuals. There seems to be some certain "Thing" that survivors possess.

[missjv]

i still think where you are treated has alot to do with survival. when i was first diagnosed i went to an onco who told me i would be on palliative chemo and surgery was not possible since i had more then 1 liver met, even though my case is consisdered rare that i became stage 4 from a very small early t1 polyp that had no vascular invasion, no lymphnodes were involved. what if i listened to that woman and did not pursue another opinion? thank god my family and friends were on the internet looking up hospitals and different treatments. a cure for stage 4 colon cancer while it does happen is very rare in people just receiving chemo. but a cure nowdays from resection is becoming more common if your cancer has not spread to multiple sites. my lesions on the liver were very small and all in 1 segment of my right lobe which the doctors who performed my liver resection told me i was very lucky because alot of people have tumors spread throughout the liver and surgery cannot be performed. i am determined to beat this crap and i think i have a much better chance of doing so thanks to the surgery. there are alot of people who go to a doc and take what they say and never get another opinion which is sad, doctors should encourage second opinions especially when your life is at stake. my original doc got very pissed off when i went for another opinion which showed me she did not give a crap whether i lived or died.

missjv

[Erika]

I sympathize for your quest for answers Ed. I'm sure most people on this forum do. Cancer is frustrating, it is unfair, it knows no boundaries, IT SUCKS.

Where does it come from and how do we cure it? Those answers are probably the holy grail of medicine. But cancer is also complex with multiple causal factors (perhaps within a single individual), thus a universal cure may not be practical. So what are we to do? Well, just like you suggest, we do our own research by talking to doctors and experts, survivors, perhaps even reading the literature.

I know that you love to poop on the parade of those of us who have followed through with conventional cancer therapy. I also know that the scope of your 'research' is limited based on the misrepresented and inaccurate information you have posted in the past, but I do not object to prompting thought and investigation and inquiry, as you have done in your most recent posts.

But some caution is warranted in regards to your last rant that survival
is due to some special quality we possess or lifestyle change that we make.

I beg to differ. It's not that simple.

And that is not to say that the changes we make aren't good to our overall health, or that the will to live isn't helpful, or reducing stress doesn't improve our quality of life. I wouldn't disagree that stress is a contributor or enabler to disease. However, at 22 I was no more stressed than the rest of my grad student colleagues and they didn't get cancer. And I'm not about to go down the path of blaming myself for getting cancer because I didn't eat better, or exercise enough, or whatnot- and no one else should either. Would you say that a young child has been "going down the wrong road" in life at say age 5 and that this 5 year old not only recognizes that, but also can enact the necessary big lifestyle changes?

Awesome people lose their lives to cancer, and miserable people live long lives. I don't think I deserve to still be alive any more than the friends I've lost to colon cancer. I looked in their eyes and saw their desire to live, I watched them cherish their children, enjoy their family and friends, even while their bodies were riddled with cancer.

Many survivors adjust or tweek their life habits not so much in an effort to increase their longevity but for a better quality of life. We know more than most that we can die when we least expect and we don't have control over it, but we can take action for how we spend the time we do have.

I wish I knew why I got cancer, but that knowledge wouldn't necessarily have solved how to cure my cancer. Cancer biology is more complicated than that. Why have I survived over 6 years despite a stage IV diagnosis? The proximate reason is because my treatment worked. The chemo, the surgery worked. Ultimate explanations are debatable and uncertain (and for many fall in the spiritual realm). Have I been stressed in the last 6 years? Hell yes, I can think of fewer things more stressful than a cancer diagnosis. Have I made lifestyle changes? Of course, but I wouldn't consider them to be drastic. Do I appreciate life more? Absolutely, perhaps more than the hundreds of people I pass every day who haven't had and never will have cancer.

All of us, myself included, are searching for answers we may never find. The least we can find is peace. Above answers and most of all, I hope you find peace, Ed, in whatever form that may be for you.

Erika

[jsills]

Bradyr,
I am waitng to hear what your results were yesterday. Wishing you the very best
Jimmy

[bradyr]

thanks for the concern.
i had the cat scan on friday, but of course they don't tel you anything. i see my radiation oncologist tuesday am - and my chemo oncologist the week after.

so i'll be sure and post something tuesday afternoon.