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Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: New to Board

Postby Cowgirl918 » Thu Jan 28, 2016 2:41 pm

So sorry that you need to be here but glad that you found us. I agree with the others. You are one tough gal or as I would say "Cowgirl Tuff!" Stay in touch as you will find both support and wisdom among us. Here's to ditching the walker soon :)
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

EverySunriseCounts
Posts: 19
Joined: Sun Jan 17, 2016 1:25 pm

Re: New to Board

Postby EverySunriseCounts » Thu Jan 28, 2016 4:20 pm

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.
Partner:
-Diagnosed with Stage IV CRC 09/14, liver,lymph mets
-Started Folfox
- Emergency surgery 10/14, removed colon tumor, temp ileostomy
- New abdominal tumor 05/15 changed to Folfiri
- Added Avastin 09/15
- Stable scan (liver mets still present) 11/15
- Stable scan 02/16; chemo halted 03/25
-Ostomy reversal 05/16

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: New to Board

Postby Nik Colon » Thu Jan 28, 2016 4:55 pm

Welcoms, sorry to hear of the complications. Best wishes
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

User avatar
BeansMama
Posts: 952
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: New to Board

Postby BeansMama » Fri Jan 29, 2016 10:49 am

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.


It most definitely helps to hear positive stories of others in the same boat I am in. It gives me hope to go along with my stubborn nature, so thank you so much for that. I needed that hope very much.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Andrea1976
Posts: 372
Joined: Sun Jan 03, 2016 10:32 am

Re: New to Board

Postby Andrea1976 » Sun Jan 31, 2016 6:58 pm

Yes, it's amazing the progress of cancer treatment. Like this http://www.erinzammettruddy.com/my-cancer-journey/. She has different type of cancer but also not curable but with the newest medicine she has been living normal life more than 10 years and even had 2 kids during the time.
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery
CEA after polyp removal 0.3
Genetic testing negative for colon and breast cancer
39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!

henry123
Posts: 10
Joined: Sun Oct 08, 2017 3:25 am

Re: New to Board

Postby henry123 » Wed Oct 11, 2017 7:08 am

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.

User avatar
WriterGirl1969
Posts: 450
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: New to Board

Postby WriterGirl1969 » Wed Oct 11, 2017 7:40 pm

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.


And so fitting considering our girl beans just completed immunotherapy and surgery that has given her at least a fighting chance at that elusive word "cure." These words of hope are what make this support group so amazing to me. I see some really horrible things people are going through, but very little "poor you" accompanied by pats on the head and sad smiles. No. These people give you drug trials, solid information, new treatments, best doctors, and most of all, hope. Thanks for reminding us. Here's to beansmama, her recovery from surgery and her long overdue cure.
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

User avatar
CRguy
Posts: 9220
Joined: Sun Feb 10, 2008 6:00 pm

Re: New to Board

Postby CRguy » Wed Oct 11, 2017 7:51 pm

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


WORD !
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

benben
Posts: 211
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: New to Board

Postby benben » Wed Oct 11, 2017 9:02 pm

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


WORD !



I hope she got her Root Beer ASAP too :).
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC


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