needing some positive feedback please
Comments
-
AHOY, JEFF
Hey there, Jeff -
Welcome to the site. I tell ya, if you're looking for positive, uplifting stories of people who have beat Stage IV colon cancer or folks who are living happy profductive lives while managing Stage IV colon cancer, you have come to the right place.
The first piece of advice I am going to give you and your sister is: STOP READING THE CRAP THAT'S ON THE INTERNET! There is so much doom and gloom there. I swear, anyone who can read that stuff and think they have a snowball's chance in hell of beating cancer must have eaten some of Phillig's brownies. The fact of the matter is, you can beat cancer. Even if you can't necessarily beat it, you can live a happy and relatively normal life while managing it. There are a LOT of people here who are doing just that.
I encourage your sister to come here herself and get the scoop straight from these survivors' mouths.
Keepin you, your sister and your family in my prayers.
- SpongeBob0 -
Encouragement
Welcome Jeff. I am happy you found us, but sorry you had to!
Come here often...this is the best place to find out what you need to know and to get encouragement. Click on the individual Avatars and read about the many people with stage 4 who are still fighting and winning. I, myself, was DX'd last Oct as Stage 3, and last week was declared NED (no evidence of disease) It CAN happen!
SpongeBob is right, STAY OFF THE INTERNET. Most of the info is at least 5 years old and they have made great strides in treatments in the past 5 years. Also, your sister is NOT a statistic, she is a person.
Our thoughts and prayers ware with your family. I am very sorry about your parents as well.
Vicki0 -
Hi Jeff!VickiCO said:Encouragement
Welcome Jeff. I am happy you found us, but sorry you had to!
Come here often...this is the best place to find out what you need to know and to get encouragement. Click on the individual Avatars and read about the many people with stage 4 who are still fighting and winning. I, myself, was DX'd last Oct as Stage 3, and last week was declared NED (no evidence of disease) It CAN happen!
SpongeBob is right, STAY OFF THE INTERNET. Most of the info is at least 5 years old and they have made great strides in treatments in the past 5 years. Also, your sister is NOT a statistic, she is a person.
Our thoughts and prayers ware with your family. I am very sorry about your parents as well.
Vicki
Welcome to the forum! I hope your sister comes here as well, where we can all talk and get her through this. This is a great forum, without it, I don't know what I would be like right now.
I have 4 kids, and been married almost 14 years, diagnosed with Stage 4 Colon cancer with a tumor in the liver in January, and been on the Folfiri Chemo treatment plan since February. I get hooked up every other Wednesday, and a home health nurse comes and unhooks me on Fridays--chemo isn't what it used to be, they have great anti-nausea drugs out there now, Emend and Dexamethasone is what works the best for me, but I had no signs and symptoms of this disease, I always wondered what happened to Stage 1, 2 and 3??? I went to the gyno, who did put me off saying I didn't need colonoscopies till I was 50! I was diagnosed at 43, a month before my 44th birthday!
Let your sister know there is hope out there! alot of people who have had this disease for years.. my chemo nurses even tell me they still know people with Stage 4 who are still around for over 10 years! it's all in the attitude, just make sure she keeps an upbeat positive attitude, and don't let the cancer beat her! we're here for her, and you, for any kinds of questions and comfort.
And like the others said, STAY OFF THE INTERNET! everything is all doom and gloom on it, that's for sure. If she needs any kind of anti-depressants, or anti-anxiety meds, the dr should prescribe them for her, and it does help the mood, and the person, I hope everything goes well in her new journey, and it's just a different way of living now...we aren't dying of it, we're living with it, my thoughts and prayers are with you and your family!
Hugsssss!
~Donna0 -
Jeff.......Shayenne said:Hi Jeff!
Welcome to the forum! I hope your sister comes here as well, where we can all talk and get her through this. This is a great forum, without it, I don't know what I would be like right now.
I have 4 kids, and been married almost 14 years, diagnosed with Stage 4 Colon cancer with a tumor in the liver in January, and been on the Folfiri Chemo treatment plan since February. I get hooked up every other Wednesday, and a home health nurse comes and unhooks me on Fridays--chemo isn't what it used to be, they have great anti-nausea drugs out there now, Emend and Dexamethasone is what works the best for me, but I had no signs and symptoms of this disease, I always wondered what happened to Stage 1, 2 and 3??? I went to the gyno, who did put me off saying I didn't need colonoscopies till I was 50! I was diagnosed at 43, a month before my 44th birthday!
Let your sister know there is hope out there! alot of people who have had this disease for years.. my chemo nurses even tell me they still know people with Stage 4 who are still around for over 10 years! it's all in the attitude, just make sure she keeps an upbeat positive attitude, and don't let the cancer beat her! we're here for her, and you, for any kinds of questions and comfort.
And like the others said, STAY OFF THE INTERNET! everything is all doom and gloom on it, that's for sure. If she needs any kind of anti-depressants, or anti-anxiety meds, the dr should prescribe them for her, and it does help the mood, and the person, I hope everything goes well in her new journey, and it's just a different way of living now...we aren't dying of it, we're living with it, my thoughts and prayers are with you and your family!
Hugsssss!
~Donna
Ditto what all above say....This is the best place in the world to be for honest down to earth, nitty gritty,(not The Dirt Band) most knowledgeble bunch of yahoos I have ever been aquainted with...Tell Sis to come in and join us....It will overwhelm you to hear the stories that we all share to get us through and to make each other laugh and smile in perhaps difficult times. This is the only place to be on the internet...We have been there done that and have scars to prove it....You and sis come on in, pull up a chair and gather round the campfire cause boy have we got some stories to tell......and by the way....Welcome Home
0 -
encouragement
Hi Jeff,
I'm very sorry to hear about your sister. I was diagnosed as stage IV rectal cancer when I was 41- also with a husband and three kids. That was a year and ten months ago now & I'm doing pretty well. When diagnosed, I didn't know if I was going to make it. I had many tumors in my liver and both lungs, as well as in my rectum. I was not a surgical candidate at first, so I was started right away on chemo (Folfox and Avastin- the "Folfox" consists of three things called 5FU, Leucovorin, and Oxalyplatin). The Oxalyplatin is the one that really kicks your butt- both the cancer and the rest of the body. But it did the trick in me- I went from 12+ tumors in my liver to down to just 3 in my liver after just 8 weeks of it (which is when I had a follow up scan to see how I was responding). Since then, I finished out that chemo, had radiation, surgery, and more chemo. I even had a 3 cm rectal tumor completely disappear following the radiation (which I was told would never happen). Right now I'm on a "maintenance" dose of low level chemo to make sure it doesn't come back again, since I did suffer a recurrence at one point. I guess if I had known everything right at the start, it would have been very overwhelming for me. I think I was given information in small chunks. There are definitely a few people from this website who have had stage IV who are currently NED (no evidence of disease- that's kind of the new term for remission). Once you hit 5 years of that, the odds are greatly in your favor that it's going to stay gone. I've heard of a couple of people who have been NED 7 or 8 years- one even has been NED for 12 years. Those are the stage IV people- of course stages I, II, or III are even better than that, but stage IV colon or rectal cancer does NOT have to be a death sentence anymore (even though it certainly feels like it at first). There are just so many more things they are doing now and there are new things in the study phase right now that will be out in a couple more years. I think of mine as kind of chronic illness I deal with that I'm just doing minimal treatment for at this point so I can go on with life- and I am! I even joined a gym last month and have been feeling pretty good lately. I continue to be a busy mom, as well!
It's important, however, that your sister (and possibly you) remain aware of what's out there so far as treatments, standard of care for surgery, or follow up care, etc. I often am the one to bring a newspaper article or internet info into my doctor and ask him what he thinks. Some he has blown off and some he found very interesting. Currently, I'm in the process of changing oncologists to someone who is more "up" on the latest. Some doctors are great about keeping up on the newest and latest, but definitely not all are. If your sister isn't satisfied with a first opinion, always seek out a second- it's so worth it for peace of mind and for possibly even finding a different answer or treatment. That's what I did before having surgery (my oncologist didn't think it was neccessary for me to have liver surgery- someone else did & I ended up having it after all & it probably saved my life).
As others have stated, the statistics you read on the internet are gloomy- DON'T listen to them! Statistics, by the very nature of being statistics, are always outdated. In order to be a statistic, the information is at least 5 years old. Five years ago there weren't as many treatment options as we now have. If the statistics you see and read could be based on current treatments, they'd be much, much better than what they state. But, like I said, statistics are usually based on people who were diagnosed and treated at least five years ago (that's how they can come up with "5 year survival rate" statistics). SO... encourage your sister, yourself, and the rest of your family with that knowledge- that all statistics are outdated and things are getting better and better! I wouldn't say to totally keep off the internet itself, as some have said, but just to be wary of any "survival statistics". The internet will provide some information on what's standard of care for treatments, etc. I've actually gotten most of my questions answered and most of my encouragement to be positive in my fight from people on this website! A couple of good other info. sites to check out and possibly to subscribe to their e-newsletters are: C-3 (Colorectal Cancer Coalition- by Dr. Josef Lenz from USC- very insightful and helpful), Cancer Compass News, and also chemocare.com Chemocare.com will give good up to date info on all the possible chemos that will be used, side effects, etc. Other people may chime in with other sites that they've found helpful. I'd say if you find one site's info. gloomy and depressing, then click off of it, try not to be discouraged, and find another site that is more encouraging and more RECENT- make sure you're not reading and taking heed to articles or studies that are from more than a year or two ago. The other two sites other than chemocare.com that I mentioned above are just good for seeing the latest news on nutrition, and just the latest in colon/rectal cancer news. There are several good books out there also on eating well for cancer, etc. It's really overwhelming if you listen to everything and everyone's advice. When I first got the cancer, I had many, many well intentioned friends who told me I had to not take chemo, or take this supplement because they've read testimonials of people who were cured from it, etc. Well, I couldn't do it all & although chemo does have its bad side effects on the body, I know I would have been dead now if I hadn't taken it- I had way too many tumors to "wait and see" if natural methods would cure me. Now that I'm doing so much better, I AM doing much more with eating organic, avoiding certain things, and taking vitamin D supplements, and trying to do what I can to build up the immune system in my body without compromising the effectiveness of the chemo. It does get overwhelming, but just try to take in the info in "baby steps".
I know this is a terrible blow to your sister, you, and your whole family- definitely I've "been there, done that" and can relate!! I found even with me being the one with the cancer, that I've often had to be the strong one for the rest of my family. Not always easy, but I believe God gives me that comfort and strength. I don't know what your beliefs are, of course, but I'd be happy to share praying for your sister and you and also any other thoughts or insights on the spiritual level, if that's something you'd like. I certainly won't be offended if not but, if you'd like to, send me a PM (private message) letting me know. In case you're not sure how to do that, go to the top of the webpage "CSN Home", then "send a private message" (or maybe it's "new message", or something like that)- ask if you can't figure it out. My name to input is lisa42.
Take care & I'll be thinking of you and your sister-
Lisa0 -
tylisa42 said:encouragement
Hi Jeff,
I'm very sorry to hear about your sister. I was diagnosed as stage IV rectal cancer when I was 41- also with a husband and three kids. That was a year and ten months ago now & I'm doing pretty well. When diagnosed, I didn't know if I was going to make it. I had many tumors in my liver and both lungs, as well as in my rectum. I was not a surgical candidate at first, so I was started right away on chemo (Folfox and Avastin- the "Folfox" consists of three things called 5FU, Leucovorin, and Oxalyplatin). The Oxalyplatin is the one that really kicks your butt- both the cancer and the rest of the body. But it did the trick in me- I went from 12+ tumors in my liver to down to just 3 in my liver after just 8 weeks of it (which is when I had a follow up scan to see how I was responding). Since then, I finished out that chemo, had radiation, surgery, and more chemo. I even had a 3 cm rectal tumor completely disappear following the radiation (which I was told would never happen). Right now I'm on a "maintenance" dose of low level chemo to make sure it doesn't come back again, since I did suffer a recurrence at one point. I guess if I had known everything right at the start, it would have been very overwhelming for me. I think I was given information in small chunks. There are definitely a few people from this website who have had stage IV who are currently NED (no evidence of disease- that's kind of the new term for remission). Once you hit 5 years of that, the odds are greatly in your favor that it's going to stay gone. I've heard of a couple of people who have been NED 7 or 8 years- one even has been NED for 12 years. Those are the stage IV people- of course stages I, II, or III are even better than that, but stage IV colon or rectal cancer does NOT have to be a death sentence anymore (even though it certainly feels like it at first). There are just so many more things they are doing now and there are new things in the study phase right now that will be out in a couple more years. I think of mine as kind of chronic illness I deal with that I'm just doing minimal treatment for at this point so I can go on with life- and I am! I even joined a gym last month and have been feeling pretty good lately. I continue to be a busy mom, as well!
It's important, however, that your sister (and possibly you) remain aware of what's out there so far as treatments, standard of care for surgery, or follow up care, etc. I often am the one to bring a newspaper article or internet info into my doctor and ask him what he thinks. Some he has blown off and some he found very interesting. Currently, I'm in the process of changing oncologists to someone who is more "up" on the latest. Some doctors are great about keeping up on the newest and latest, but definitely not all are. If your sister isn't satisfied with a first opinion, always seek out a second- it's so worth it for peace of mind and for possibly even finding a different answer or treatment. That's what I did before having surgery (my oncologist didn't think it was neccessary for me to have liver surgery- someone else did & I ended up having it after all & it probably saved my life).
As others have stated, the statistics you read on the internet are gloomy- DON'T listen to them! Statistics, by the very nature of being statistics, are always outdated. In order to be a statistic, the information is at least 5 years old. Five years ago there weren't as many treatment options as we now have. If the statistics you see and read could be based on current treatments, they'd be much, much better than what they state. But, like I said, statistics are usually based on people who were diagnosed and treated at least five years ago (that's how they can come up with "5 year survival rate" statistics). SO... encourage your sister, yourself, and the rest of your family with that knowledge- that all statistics are outdated and things are getting better and better! I wouldn't say to totally keep off the internet itself, as some have said, but just to be wary of any "survival statistics". The internet will provide some information on what's standard of care for treatments, etc. I've actually gotten most of my questions answered and most of my encouragement to be positive in my fight from people on this website! A couple of good other info. sites to check out and possibly to subscribe to their e-newsletters are: C-3 (Colorectal Cancer Coalition- by Dr. Josef Lenz from USC- very insightful and helpful), Cancer Compass News, and also chemocare.com Chemocare.com will give good up to date info on all the possible chemos that will be used, side effects, etc. Other people may chime in with other sites that they've found helpful. I'd say if you find one site's info. gloomy and depressing, then click off of it, try not to be discouraged, and find another site that is more encouraging and more RECENT- make sure you're not reading and taking heed to articles or studies that are from more than a year or two ago. The other two sites other than chemocare.com that I mentioned above are just good for seeing the latest news on nutrition, and just the latest in colon/rectal cancer news. There are several good books out there also on eating well for cancer, etc. It's really overwhelming if you listen to everything and everyone's advice. When I first got the cancer, I had many, many well intentioned friends who told me I had to not take chemo, or take this supplement because they've read testimonials of people who were cured from it, etc. Well, I couldn't do it all & although chemo does have its bad side effects on the body, I know I would have been dead now if I hadn't taken it- I had way too many tumors to "wait and see" if natural methods would cure me. Now that I'm doing so much better, I AM doing much more with eating organic, avoiding certain things, and taking vitamin D supplements, and trying to do what I can to build up the immune system in my body without compromising the effectiveness of the chemo. It does get overwhelming, but just try to take in the info in "baby steps".
I know this is a terrible blow to your sister, you, and your whole family- definitely I've "been there, done that" and can relate!! I found even with me being the one with the cancer, that I've often had to be the strong one for the rest of my family. Not always easy, but I believe God gives me that comfort and strength. I don't know what your beliefs are, of course, but I'd be happy to share praying for your sister and you and also any other thoughts or insights on the spiritual level, if that's something you'd like. I certainly won't be offended if not but, if you'd like to, send me a PM (private message) letting me know. In case you're not sure how to do that, go to the top of the webpage "CSN Home", then "send a private message" (or maybe it's "new message", or something like that)- ask if you can't figure it out. My name to input is lisa42.
Take care & I'll be thinking of you and your sister-
Lisa
ty for all the encouraging responces ..she has been readin all this!0 -
Encouragementjeffw30707 said:ty
ty for all the encouraging responces ..she has been readin all this!
Hi. Adding my two cents worth. Was 45 when had emergency colon surgery. Going on 5 years now. Was dignosed with stage 4 colon cancer, spread to overy and lymph. Had the surgeries and chemo. Still here! Had my colostomy reversed and seem to be doing ok. Keeping an eye on spot on liver, still go for regular testing and blood work. Hope things go well for your sister and family. It is a tough fight, but it is doable.
Best Wishes
Pam0 -
Hope
My husband was diagnosed with stage 4 colon cancer in 8/06..colostomy surgery in 9/06. Multiple mets to liver and then lung...Very positive story ...can read it if you click on my name in blue box or go to profile or you can read it at www.caringbridge.org/visit/frankproctor. Tell her never give up...keep searching ...there is always hope. Will keep you all in my thoughts and prayers.
anna0 -
positive
Hi Jeff and Sis -- welcome to this wonderful group but I am sorry you have cause to be here.
I was diagnosed with Stage III rectal cancer, at age 44. My kids were 10 and 12.
It is now 6+ years later. I'm ALIVE, I'm "NED" (no evidence of disease), and my gorgeous boys are 16 and 18 - men!
I have had a couple of setbacks (recurrences) and I'm now on maintenance chemo (pills). It is possible to live with this disease, for a looong time. That's my plan, anyway!!
Positive attitude is important. Ignore as much of the negative stuff as you can responsibly do.
Best wishes to you both
Tara0 -
WelcometaraHK said:positive
Hi Jeff and Sis -- welcome to this wonderful group but I am sorry you have cause to be here.
I was diagnosed with Stage III rectal cancer, at age 44. My kids were 10 and 12.
It is now 6+ years later. I'm ALIVE, I'm "NED" (no evidence of disease), and my gorgeous boys are 16 and 18 - men!
I have had a couple of setbacks (recurrences) and I'm now on maintenance chemo (pills). It is possible to live with this disease, for a looong time. That's my plan, anyway!!
Positive attitude is important. Ignore as much of the negative stuff as you can responsibly do.
Best wishes to you both
Tara
Welcome to the board. This is definitely the place to find hope.
I was diagnosed at age 42 Stage IV in October 2007. I am currently NED(no evidence of disease). I am also a mother of two girls age 14 and 12. Life is starting to get back to normal now.
Not too long ago I posted a thread called "Calling all Stage IV's" looking for hope of those surving and /or living well with the disease. Many people responded with their wonderful stories. Just do a search for Calling all Stage IV's. It made me feel more hopeful and inspired me to keep up the fight.
Keep us posted and keep posting,
Dawn0 -
Hope...Shayenne said:Hi Jeff!
Welcome to the forum! I hope your sister comes here as well, where we can all talk and get her through this. This is a great forum, without it, I don't know what I would be like right now.
I have 4 kids, and been married almost 14 years, diagnosed with Stage 4 Colon cancer with a tumor in the liver in January, and been on the Folfiri Chemo treatment plan since February. I get hooked up every other Wednesday, and a home health nurse comes and unhooks me on Fridays--chemo isn't what it used to be, they have great anti-nausea drugs out there now, Emend and Dexamethasone is what works the best for me, but I had no signs and symptoms of this disease, I always wondered what happened to Stage 1, 2 and 3??? I went to the gyno, who did put me off saying I didn't need colonoscopies till I was 50! I was diagnosed at 43, a month before my 44th birthday!
Let your sister know there is hope out there! alot of people who have had this disease for years.. my chemo nurses even tell me they still know people with Stage 4 who are still around for over 10 years! it's all in the attitude, just make sure she keeps an upbeat positive attitude, and don't let the cancer beat her! we're here for her, and you, for any kinds of questions and comfort.
And like the others said, STAY OFF THE INTERNET! everything is all doom and gloom on it, that's for sure. If she needs any kind of anti-depressants, or anti-anxiety meds, the dr should prescribe them for her, and it does help the mood, and the person, I hope everything goes well in her new journey, and it's just a different way of living now...we aren't dying of it, we're living with it, my thoughts and prayers are with you and your family!
Hugsssss!
~Donna
Hello.
Your post regarding your sister's despair about her cancer diagnosis struck a real chord with me. I would like to share my husband's hopeful story with you in the hope that you will share it with your sister.
When my husband was diagnosed with stage III (later stage IV) colon cancer in 2006, I, too, thought our world was crashing. My only personal experience with cancer was twenty years before when my father died of multiple myeloma. My father's suffering was shattering and the treatment options open to us as a family without insurance were cruelly minimal. So, when my husband became ill with cancer, I had, as they say, a whole lot of baggage.
Because I truly believe knowledge is power and because research is my forte, I reached out for what was natural and comforting to me on the night of my husband's surgery and diagnosis; I drove home from the hospital and immediately went online. Sadly, I didn't find this site. Instead, into the early hours of the morning, I randomly searched for information about colon cancer and its treatment. What I found about statistics (vis-a-vis survivability) added further to my despair rather than reassuring me. What I didn't understand that night was that the statistical data available online is dated and unreliable. Others have told you that already and you and your sister need to take their wise counsel.
In the months that followed, my husband healed from his surgery and found a driven and brilliant oncologist. When the oncologist mentioned a goal of "cure" for my husband, it took my breath away. He raised a possibility we had not dared consider.
Fast forward...It is now 2009, more than three years since the night of my husband's dire diagnosis, and my husband is thriving. To be very honest with you, it hasn't always been easy. My husband was 88 when he was diagnosed (not an easy age to face aggressive treatment) and he has had two additional surgeries and had months of chemotherapy. But, my husband's most recent scans were clear of any signs of cancer. He feels well. He is happy. Life is good. It doesn't get any better than that!
Please give your sister my best wishes for her recovery.
Hatshepsut0
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