The Colon Club

EverySunriseCounts wrote:HI BeansMama,

I hear you. Boy do I hear you! My sweetie got the Stage IV Dx September 2014.

There's so much more I could say, but I'll focus on this. The day we got the diagnosis, the thought flashed through my head: "There's a guy somewhere who was the last guy diagnosed with AIDS before the anti-retroviral drugs came out. Maybe this is like that."

What I mean is, the immunotherapies and personalized treatments that are coming out now are absolutely, positively, game-changers.

And unlike the AIDS drugs, they promise an actual cure.

The analogy to the last guy diagnosed with AIDS: the statistics are a "before" and an "after". Before the anti-retrovirals, AIDS was incurable. It would kill you. The only question was when.

Afterwards--AIDS became a manageable condition.

In one day, the statistics changed--but people didn't realize it until a few more years had passed.

I truly believe we're at the same point now with cancer, and CRC in particular.

So. You write about how scary it is when your doc said, "I can't promise you a cure". I hear you.

But you'll hear from many folks on this forum about living years with the same disease, same stage, you have. Last summer I met a fellow who got your diagnosis---back in 1992. He's alive, well, thriving, hiking, and kayaking these days. He's not "cured". But he's around with no port, no meds, and no evidence of disease.

So even before all the recent developments, "no cure" doesn't have to mean what it may sound like.

And again, things have really changed. And they are moving FAST. One of the biggest drugs to hit the market was approved by the FDA just two weeks after my sweetie was diagnosed. Over the next 2 years, these therapies are going to move from clinical trials to actual cures.

Meantime, there are people walking around today have been been cured of "incurable" stage IV cancer. The earliest known patient receiving immunotherapy treatment is a cancer-free stage IV lung cancer patient, alive and well today after a terminal diagnosis in 2001. I've seen the X rays.

My sweetie and I were on a Webinar last week hosted by some of the leading researchers in the field. These guys work with late-stage, "incurable" cancer. And they kept talking about "the C word"--not cancer, but Cure. And not in the distant future, but soon. Very soon.

So for my sweetie and me, the strategy is to stay alive at all costs. Stay alive and as healthy, vital, happy, and optimistic as you possibly can. Because way sooner than you think, your doctor is going to come to you and say, "I really think you should consider X... it's had fantastic results for people like you." And after X, there will be a Y and a Z and a W and a personalized XYZW cocktail that works for you.

And with a little bit of luck, you'll be among the first to wear that "cured" badge.

There's so much more I could be saying, but I hope this helps. I know there are no promises, and this is a horrible, horrible disease that can maim and damage you even if you survive it. But there is a lot more hope than your doc is letting on.

In case you're wondering, I'm not an MD. But I'm a technology researcher by profession, I have a degree in engineering and I've done graduate research in science--so I do have some inkling what I'm talking about.

So please don't listen to the statistics. In 10 years, they'll be talking about people who were diagnosed before 2016, and afterwards. (I don't mean to imply such a firm cutoff--anyone who's here and alive now will benefit! But you get the picture). We're not there yet. But there is an enormous, glowing, bright light at the end of the tunnel, for the first time.

Again, hope this helps.

EverySunriseCounts wrote:HI BeansMama,

I hear you. Boy do I hear you! My sweetie got the Stage IV Dx September 2014.

There' so much more I could say, but I'll focus on this. The day we got the diagnosis, the thought flashed through my head: "There's a guy somewhere who was the last guy diagnosed with AIDS before the anti-retroviral drugs came out. Maybe this is like that."

What I mean is, the immunotherapies and personalized treatments that are coming out now are absolutely, positively, game-changers.

And unlike the AIDS drugs, they promise an actual cure.

The analogy to the last guy diagnosed with AIDS: the statistics are a "before" and an "after". Before the anti-retrovirals, AIDS was incurable. It would kill you. The only question was when.

Afterwards--AIDS became a manageable condition.

In one day, the statistics changed--but people didn't realize it until a few more years had passed.

I truly believe we're at the same point now with cancer, and CRC in particular.

So. You write about how scary it is when your doc said, "I can't promise you a cure". I hear you.

But you'll hear from many folks on this forum about living years with the same disease, same stage, you have. Last summer I met a fellow who got your diagnosis---back in 1992. He's alive, well, thriving, hiking, and kayaking these days. He's not "cured". But he's around with no port, no meds, and no evidence of disease.

So even before all the recent developments, "no cure" doesn't have to mean what it may sound like.

And again, things have really changed. And they are moving FAST. One of the biggest drugs to hit the market was approved by the FDA just two weeks after my sweetie was diagnosed. Over the next 2 years, these therapies are going to move from clinical trials to actual cures.

Meantime, there are people walking around today have been been cured of "incurable" stage IV cancer. The earliest known patient receiving immunotherapy treatment is a cancer-free stage IV lung cancer patient, alive and well today after a terminal diagnosis in 2001. I've seen the X rays.

My sweetie and I were on a Webinar last week hosted by some of the leading researchers in the field. These guys work with late-stage, "incurable" cancer. And they kept talking about "the C word"--not cancer, but Cure. And not in the distant future, but soon. Very soon.

So for my sweetie and me, the strategy is to stay alive at all costs. Stay alive and as healthy, vital, happy, and optimistic as you possibly can. Because way sooner than you think, your doctor is going to come to you and say, "I really think you should consider X... it's had fantastic results for people like you." And after X, there will be a Y and a Z and a W and a personalized XYZW cocktail that works for you.

And with a little bit of luck, you'll be among the first to wear that "cured" badge.

There's so much more I could be saying, but I hope this helps. I know there are no promises, and this is a horrible, horrible disease that can maim and damage you even if you survive it. But there is a lot more hope than your doc is letting on.

In case you're wondering, I'm not an MD. But I'm a technology researcher by profession, I have a degree in engineering and I've done graduate research in science--so I do have some inkling what I'm talking about.

So please don't listen to the statistics. In 10 years, they'll be talking about people who were diagnosed before 2016, and afterwards. (I don't mean to imply such a firm cutoff--anyone who's here and alive now will benefit! But you get the picture). We're not there yet. But there is an enormous, glowing, bright light at the end of the tunnel, for the first time.

Again, hope this helps.

henry123 wrote:Really nicely written. ..

EverySunriseCounts wrote:HI BeansMama,

I hear you. Boy do I hear you! My sweetie got the Stage IV Dx September 2014.

There' so much more I could say, but I'll focus on this. The day we got the diagnosis, the thought flashed through my head: "There's a guy somewhere who was the last guy diagnosed with AIDS before the anti-retroviral drugs came out. Maybe this is like that."

What I mean is, the immunotherapies and personalized treatments that are coming out now are absolutely, positively, game-changers.

And unlike the AIDS drugs, they promise an actual cure.

The analogy to the last guy diagnosed with AIDS: the statistics are a "before" and an "after". Before the anti-retrovirals, AIDS was incurable. It would kill you. The only question was when.

Afterwards--AIDS became a manageable condition.

In one day, the statistics changed--but people didn't realize it until a few more years had passed.

I truly believe we're at the same point now with cancer, and CRC in particular.

So. You write about how scary it is when your doc said, "I can't promise you a cure". I hear you.

But you'll hear from many folks on this forum about living years with the same disease, same stage, you have. Last summer I met a fellow who got your diagnosis---back in 1992. He's alive, well, thriving, hiking, and kayaking these days. He's not "cured". But he's around with no port, no meds, and no evidence of disease.

So even before all the recent developments, "no cure" doesn't have to mean what it may sound like.

And again, things have really changed. And they are moving FAST. One of the biggest drugs to hit the market was approved by the FDA just two weeks after my sweetie was diagnosed. Over the next 2 years, these therapies are going to move from clinical trials to actual cures.

Meantime, there are people walking around today have been been cured of "incurable" stage IV cancer. The earliest known patient receiving immunotherapy treatment is a cancer-free stage IV lung cancer patient, alive and well today after a terminal diagnosis in 2001. I've seen the X rays.

My sweetie and I were on a Webinar last week hosted by some of the leading researchers in the field. These guys work with late-stage, "incurable" cancer. And they kept talking about "the C word"--not cancer, but Cure. And not in the distant future, but soon. Very soon.

So for my sweetie and me, the strategy is to stay alive at all costs. Stay alive and as healthy, vital, happy, and optimistic as you possibly can. Because way sooner than you think, your doctor is going to come to you and say, "I really think you should consider X... it's had fantastic results for people like you." And after X, there will be a Y and a Z and a W and a personalized XYZW cocktail that works for you.

And with a little bit of luck, you'll be among the first to wear that "cured" badge.

There's so much more I could be saying, but I hope this helps. I know there are no promises, and this is a horrible, horrible disease that can maim and damage you even if you survive it. But there is a lot more hope than your doc is letting on.

In case you're wondering, I'm not an MD. But I'm a technology researcher by profession, I have a degree in engineering and I've done graduate research in science--so I do have some inkling what I'm talking about.

So please don't listen to the statistics. In 10 years, they'll be talking about people who were diagnosed before 2016, and afterwards. (I don't mean to imply such a firm cutoff--anyone who's here and alive now will benefit! But you get the picture). We're not there yet. But there is an enormous, glowing, bright light at the end of the tunnel, for the first time.

Again, hope this helps.

WriterGirl1969 wrote:Here's to beansmama, her recovery from surgery and her long overdue cure.
--Tracy

CRguy wrote:

WriterGirl1969 wrote:Here's to beansmama, her recovery from surgery and her long overdue cure.
--Tracy

WORD !