Stage IV incurable Colon cancer.
Comments
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PADAVE1PADAVE1 said:Treatment Break
Kyolcu - As [I think] most of us know - alot of what we go through is a bit of a science experiment - my 3-month off is a combination of A: giving me a break but also B: Let's see how the C reacts with the idea 3-month should not equal a dramatic change in my situation. I'm at MSKC so am in good hands. My last treatment was ~7-weeks ago and I feel pretty great now - I like feeling pretty great lol. Hopefully the Fall works out for me. Dave
I am happy for you it works with longer breaks. It may also depends on Oncologist. My Oncologist at MD Anderson recently put me on Cetuximab only as maintenance chemo, after 2 months CEA increased little bit and tumors grown little bit she added 2.nd chemo of Irinotecan. I hope I can have longer breaks as well.
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Hello, i am completely new
Hello, i am completely new this forum and just found your post. I'm very sorry to hear about your wife. My husband just got diagnosed with colon cancer, stage IV. Were depressing and shocking news! He is only 42, strong man. We are getting the port surgically inserted next week and, hoepfully, starting the chemo next week as well. We are going on avsatin and Follvox (or something like that) too. 2 days in 14 days. first 2 hours in the center and then going home for the rest 46 hours. Very overwelhming. Any tips or advices about the food/exercise/support groups? It's all new. Thank you all.
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I am currently being treatedflowerrod said:Hello, i am completely new
Hello, i am completely new this forum and just found your post. I'm very sorry to hear about your wife. My husband just got diagnosed with colon cancer, stage IV. Were depressing and shocking news! He is only 42, strong man. We are getting the port surgically inserted next week and, hoepfully, starting the chemo next week as well. We are going on avsatin and Follvox (or something like that) too. 2 days in 14 days. first 2 hours in the center and then going home for the rest 46 hours. Very overwelhming. Any tips or advices about the food/exercise/support groups? It's all new. Thank you all.
I am currently being treated for stage 4 colon cancer. I was in folfox for a while then had a reaction and switched to folfiri. Oxaliplatin is one of the folfox drugs. It causes cold issues so for about the first week of cycle, can't have cold foods or beverages. I haven't had food issues around not eating. In fact, for me, the drugs have me starving all the time and I have gained 25 pounds. I do have to eat smaller meals. I get a bit of indigestion. My gall bladder was removed with my liver resection, so too much bad fats at one time doesn't work for me. You didn't ask about cold, but it hurts. You literally need gloves to get something out of fridge. The fatigue for me is bad the first week, gets better towards the end. Although, each round has made me have worse fatigue. My hospital has a nutritionist who talked with me during my first infusion. Apparently, protein is very important. You should speak to one if it is available. She gave me a handout that had the various scenarios that can affect appetite and the best way to handle each.
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long road aheadflowerrod said:Hello, i am completely new
Hello, i am completely new this forum and just found your post. I'm very sorry to hear about your wife. My husband just got diagnosed with colon cancer, stage IV. Were depressing and shocking news! He is only 42, strong man. We are getting the port surgically inserted next week and, hoepfully, starting the chemo next week as well. We are going on avsatin and Follvox (or something like that) too. 2 days in 14 days. first 2 hours in the center and then going home for the rest 46 hours. Very overwelhming. Any tips or advices about the food/exercise/support groups? It's all new. Thank you all.
Hello flowerrod, sorry for your husbands diagnosis. It is a long road ahead. My wife has been on chemo for a year. I found that doing a couple of things helped her out a lot. In the morning I make a fresh organic juice with diffrent things that I found on the internet that helps the effected area that my wife has. With that I also make a soup sop tea, they say it helps cancer. She also take a CBD/ THC tincture. All of this helps with energy and keeps her from getting constipated. The key is to drink lots of water, you want to get the chemo out of the body as soon as possible. She eats basically any and everything, but she cut down on her sugar in take, and her red meat in take. Also your husband might get sores in his mouth, just add a tablespoon of salt to a glass of water and rinse this will help him out. You will see the day he get disconnected and the next day he will be drained. Get as much rest as he can, he will regain his strength right around the time the next round comes. Hope this help, if you need anything you have a lot of expertise in this forum. Make sure you take care of yourself, he will need you more than you will ever know.
Kevin
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I’m sorry to hear of your wife’s dxKevin1224 said:Thank you
Not going to lie when the onc told us that we were both down. I can also see in the oncologist that it hurt her to tell us. She does truly care for us. With that said I told my wife I won’t give up on her and to not give up on herself. We will battle 1 day at a time, 1 week at a time, 1 month at a time and 1 year at a time.
I’m sorry to hear of your wife’s dx. My stage iv colon cancer was discovered in a similar way, high liver functions and my first doctor/oncologist thought it was my gallbladder. It wasn’t, it was cancer. He gave me less than a year over 14 years ago. I immediately got a second opinion from MSKCC (Dr. Nancy Kemeny) and I’ve been with her ever since. When you refer to your wife’s oncologist as ‘she’ it makes me think your wife is with Dr. Kemeny. I’ve done similar treatments over the years with good success, however, I’m not cured or NED which is fine with me. I had the HAI infusion installed and it totally got rid of my liver Mets. I had been inoperable at the time of my dx. Like many people, the cancer spread to my lungs and I’ve had 3-4 operations (wedge resections) and 6-7 RFA’s (ablations) which worked out ok. 5 years ago I had to have radiation on a lung met due to its location and it unfortunately gave me respiratory fibrosis- it destroyed the upper part of my right lung. I knew the risk going into it so I was bummed but not shocked. I’ve been on oral chemo, Xeloda, and Avastin ever since. I tolerate it well.
Hopefully my background story makes this point. Try to remain positive. Not always possible and there will be crappy days. New protocols become available all the time. I was helped immensely by Avastin. I did Irinoteacan for many years (7) along with Erbitux. No picnic but tolerable. In the Fall of 2017 I had to go back on Irinoteacan for two months. The entire time I was on it years ago my hair thinned but I didn’t lose it. The last time I lost it but it grew back. I mean it’s only hair and, many won’t believe this but Dr. K said “I looked cute”*. She has a reputation for being all business which I don’t mind at all. I’ve heard many people tell me that she does care about them and I truely believe that she does. I wanted an oncologist who would aggressively treat my cancer. The nurses and staff provide the warm and fuzzy part.
Personally I’d consider the clinical trial but that’s me. Immunotherapy looks very promising. Like everything else there are no guarantees at all. What works for one person may not work for another and visa versa. However, I’m a firm believer in attitude playing a role in one’s outcome.
I hope this is helpful
Baldie vs Now
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My Story
Kevin,so sorry to see you on this site, but since you are, just know it's the best.
Last December, I turned 78 and have been in remission for about 10 years. I also had stage IV colon cancer. If you care to read my story, just go to go my page and click on my blog and there you will find my story. God bless you and your wife blessed39
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Thank youPhillieG said:I’m sorry to hear of your wife’s dx
I’m sorry to hear of your wife’s dx. My stage iv colon cancer was discovered in a similar way, high liver functions and my first doctor/oncologist thought it was my gallbladder. It wasn’t, it was cancer. He gave me less than a year over 14 years ago. I immediately got a second opinion from MSKCC (Dr. Nancy Kemeny) and I’ve been with her ever since. When you refer to your wife’s oncologist as ‘she’ it makes me think your wife is with Dr. Kemeny. I’ve done similar treatments over the years with good success, however, I’m not cured or NED which is fine with me. I had the HAI infusion installed and it totally got rid of my liver Mets. I had been inoperable at the time of my dx. Like many people, the cancer spread to my lungs and I’ve had 3-4 operations (wedge resections) and 6-7 RFA’s (ablations) which worked out ok. 5 years ago I had to have radiation on a lung met due to its location and it unfortunately gave me respiratory fibrosis- it destroyed the upper part of my right lung. I knew the risk going into it so I was bummed but not shocked. I’ve been on oral chemo, Xeloda, and Avastin ever since. I tolerate it well.
Hopefully my background story makes this point. Try to remain positive. Not always possible and there will be crappy days. New protocols become available all the time. I was helped immensely by Avastin. I did Irinoteacan for many years (7) along with Erbitux. No picnic but tolerable. In the Fall of 2017 I had to go back on Irinoteacan for two months. The entire time I was on it years ago my hair thinned but I didn’t lose it. The last time I lost it but it grew back. I mean it’s only hair and, many won’t believe this but Dr. K said “I looked cute”*. She has a reputation for being all business which I don’t mind at all. I’ve heard many people tell me that she does care about them and I truely believe that she does. I wanted an oncologist who would aggressively treat my cancer. The nurses and staff provide the warm and fuzzy part.
Personally I’d consider the clinical trial but that’s me. Immunotherapy looks very promising. Like everything else there are no guarantees at all. What works for one person may not work for another and visa versa. However, I’m a firm believer in attitude playing a role in one’s outcome.
I hope this is helpful
Baldie vs Now
Thsnk you PhillieG, the oncologist at Sloan is Dr. Vargesse. She is great, very kind person. While Sloan as said that my wife’s cancer is incurable, and She is not a candidate for operation I have been getting second and upcoming third and forth opinions. I first went to a surgeon who works out of Lenox Hill, but spent time with Cancer of America’s and LIJ. He was the doctor who originally told us to do a colonoscpy. He looked at her scans, and read the reports and could not understand why they said she is not a candidate for surgery. He explained that it looks pretty straight forward and his plan was to take a big chunk of the tumor and send it to a lab to see which chemo is actually effective againt the tumors. This test takes about 3 to 5 weeks fot the results to come back. I actually heard they do this same thing in Greece and it actually has been benificial. Then he said in about 3 to 6 months of the chemo that works the tumors should shrink even more for him to sucessfully clean out the colon, liver and adrenal tumors. Then he said after that we can focus on the bone with radiation and chemo. I am a little confused how one doctors says one thing and the other says another, but at least this sounds like a game plan. Like I said I will be checking with Cancer center of America and MD Anderson to see what they say.
Kevin
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Thank you for your story. IPhillieG said:I’m sorry to hear of your wife’s dx
I’m sorry to hear of your wife’s dx. My stage iv colon cancer was discovered in a similar way, high liver functions and my first doctor/oncologist thought it was my gallbladder. It wasn’t, it was cancer. He gave me less than a year over 14 years ago. I immediately got a second opinion from MSKCC (Dr. Nancy Kemeny) and I’ve been with her ever since. When you refer to your wife’s oncologist as ‘she’ it makes me think your wife is with Dr. Kemeny. I’ve done similar treatments over the years with good success, however, I’m not cured or NED which is fine with me. I had the HAI infusion installed and it totally got rid of my liver Mets. I had been inoperable at the time of my dx. Like many people, the cancer spread to my lungs and I’ve had 3-4 operations (wedge resections) and 6-7 RFA’s (ablations) which worked out ok. 5 years ago I had to have radiation on a lung met due to its location and it unfortunately gave me respiratory fibrosis- it destroyed the upper part of my right lung. I knew the risk going into it so I was bummed but not shocked. I’ve been on oral chemo, Xeloda, and Avastin ever since. I tolerate it well.
Hopefully my background story makes this point. Try to remain positive. Not always possible and there will be crappy days. New protocols become available all the time. I was helped immensely by Avastin. I did Irinoteacan for many years (7) along with Erbitux. No picnic but tolerable. In the Fall of 2017 I had to go back on Irinoteacan for two months. The entire time I was on it years ago my hair thinned but I didn’t lose it. The last time I lost it but it grew back. I mean it’s only hair and, many won’t believe this but Dr. K said “I looked cute”*. She has a reputation for being all business which I don’t mind at all. I’ve heard many people tell me that she does care about them and I truely believe that she does. I wanted an oncologist who would aggressively treat my cancer. The nurses and staff provide the warm and fuzzy part.
Personally I’d consider the clinical trial but that’s me. Immunotherapy looks very promising. Like everything else there are no guarantees at all. What works for one person may not work for another and visa versa. However, I’m a firm believer in attitude playing a role in one’s outcome.
I hope this is helpful
Baldie vs Now
Thank you for your story PhillieG. I just finished chemo. My tumors were all removed, and they expect my scan to be clean in 6 weeks, but ya never know. To keep my head up when thinking about recurrence, I find hope in stories like yours. My take, and I might be wrong, is that if it comes back, and not where operable, I can get treatment to make it manageable and still continue with my life, just at a lower speed. Kind of like treating a chronic illness.
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Blessed 39blessed39 said:My Story
Kevin,so sorry to see you on this site, but since you are, just know it's the best.
Last December, I turned 78 and have been in remission for about 10 years. I also had stage IV colon cancer. If you care to read my story, just go to go my page and click on my blog and there you will find my story. God bless you and your wife blessed39
I didnt see the link on your about me space. I read your story awhile back but wanted to read it again. can you please send the info for that link?
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Other opinionsKevin1224 said:Thank you
Thsnk you PhillieG, the oncologist at Sloan is Dr. Vargesse. She is great, very kind person. While Sloan as said that my wife’s cancer is incurable, and She is not a candidate for operation I have been getting second and upcoming third and forth opinions. I first went to a surgeon who works out of Lenox Hill, but spent time with Cancer of America’s and LIJ. He was the doctor who originally told us to do a colonoscpy. He looked at her scans, and read the reports and could not understand why they said she is not a candidate for surgery. He explained that it looks pretty straight forward and his plan was to take a big chunk of the tumor and send it to a lab to see which chemo is actually effective againt the tumors. This test takes about 3 to 5 weeks fot the results to come back. I actually heard they do this same thing in Greece and it actually has been benificial. Then he said in about 3 to 6 months of the chemo that works the tumors should shrink even more for him to sucessfully clean out the colon, liver and adrenal tumors. Then he said after that we can focus on the bone with radiation and chemo. I am a little confused how one doctors says one thing and the other says another, but at least this sounds like a game plan. Like I said I will be checking with Cancer center of America and MD Anderson to see what they say.
Kevin
I think they play such an important role in our treatments. I was never told by SK that I could be cured but my first oncologist basically told me to start digging a hole in the ground. I’m not familiar with Dr. Vargesse, I’m sure she’s good as are the vast majority of the doctors and staff at SK. I’m also a bit puzzled why your wife was told she’s inoperable but every case is different.
The idea that they can remove part of the cancer and test it to see which treatments can be effective is quite amazing. To my knowledge, that wasn’t an option 14 years ago. Part of the game is to stay around long enough for new treatments to become available. I hope and believe that one day they’ll tame this beast called cancer.
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I’m glad my story was helpful Abitaabita said:Thank you for your story. I
Thank you for your story PhillieG. I just finished chemo. My tumors were all removed, and they expect my scan to be clean in 6 weeks, but ya never know. To keep my head up when thinking about recurrence, I find hope in stories like yours. My take, and I might be wrong, is that if it comes back, and not where operable, I can get treatment to make it manageable and still continue with my life, just at a lower speed. Kind of like treating a chronic illness.
That‘s great that your tumors were removed and you’re done with chemo. I really hope your scans are clean and stay that way. I’m not sure if it’s good or bad that I’m not clear/NED. Ideally, I’d love to be done with this but knowing me, I’d always be waiting for the other shoe to drop. No doubt many people might find this strange. I kinda find it strange too. I see it as one less thing to worry about! I just look at my situation as having a chronic condition. I could opt for ablations for the two remaining lung tumors but I’m concerned about what it could do to my already compromised breathing ability. Knowing my past history I’d probably just grow one or two more tumors. As long as my quality of life remains good I’m ok with my situation.
I’m on disability because I can not handle a 35-40 hr work schedule. I still work but not full time. I do website development for a handful of real estate clients and in April 2017 I started a real estate photography business. That’s something I never dreamed of doing but I’m familiar with the business and I’ve always loved photography so it’s kind of a natural fit. I try to keep my work schedule to 2-3 jobs per week. I’m the type of person who needs to stay busy. Here’s my site if anyone’s interested* https://nyrealestatefotos.com/ny-real-estate-fotos-portfolio
*I have no shame… ;-)
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Stage IV incurable Colon cancer
I am very sorry to hear about your wife. My wife too had stage IV colon cancer. You are doing the right things. Getting a 2nd opionon was a great move. Stage IV is a beast, but everyone's body reacts differently to the treatment. It seems that you are already clearheaded amidst the chaos this desease causes in one's life - that is good. Stay strong, your wife and family need you. Have faith - in God (if you believe), in yourself, your family & friends. Although it is difficult, try to enjoy the good moments as best as possible. The desease will create limits on certain experiences, but try to find ways to enjoy life in between the difficulties of the desease. Don't forget to take care of yourself, it is important that she has a strong person to lean against. It is unfair and I'm very sorry you and your family must face this situation.
Myd
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inoperable S4
I also have inoperable Stage 4 colon cance with mets in the liver, lymphnodes and peritenium (dagnosded Sept, '16). If did 13 rds of FOLFOX and 7 months of maintenance on Capecitabine and am now on rd 12 of FOLFIRI w/ Avastin. It sucks but whatever works I'm cool with. Be careful using CEA as an actual indicator as it does not behave the same in everyine. For instance, I was pretty far down the Stage 4 road when I got diagnosed yet my CEA was only 28; yes, with no zeros. CT is awlays the best measure of what's actually going on. Best of luck to your wife and don't ever be afarid to ask your oncologist lots of questions.
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Sorry
I'm so sorry I'm not able to help you with your particular situation but don't ever give up. There are many routes that can be taken. You and your wife are in my prayers.
Kim
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Checking in
Hello! I am a 51 year young woman who has Stage IV colon cancer with liver mets also.
i was immediately put on 5-fu, leuvocorin, oxaliplatin and Irinotecan. I wear a pump for 48 hours. I go to Yale in New Haven CT. They wanted to be as aggressive as possible. I have diarrhea and fatigue but I'm doing it. How are things for you now?
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Stage IV with liver, lung mets
Kevin,
This will probably provide no new info, but I was diagnosed with stage4 in November 2016 and immediately went on the standard of treatment care (5FU, Avastin, Oxaliplatin). I withstood Oxy through ten cycles before the neuropathy caused my Oncologist (Stein at Smilow Cancer Hospital (Yale)) to take me off the Oxy. I just completed my 40th cycle. I go every other week. I’ve only taken time off because I had travel plans. Dr Stein said I could stop treatment altogether and ‘see how it goes,’ or continue; I’m tolerating it well, I’m going to continue! I, too, am not a candidate for liver resection, so I keep on the5FU and Avastin and tgectumors keep shrinking. I think I am one lucky man.
My advice to you and your wife: keep a positive attitude. I truly think my attitude has helped me thus far. I know it has helped my family deal with this.
please let me know if I can help you at all.
Regards,
Paul
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Second opinionOtto605 said:Stage IV with liver, lung mets
Kevin,
This will probably provide no new info, but I was diagnosed with stage4 in November 2016 and immediately went on the standard of treatment care (5FU, Avastin, Oxaliplatin). I withstood Oxy through ten cycles before the neuropathy caused my Oncologist (Stein at Smilow Cancer Hospital (Yale)) to take me off the Oxy. I just completed my 40th cycle. I go every other week. I’ve only taken time off because I had travel plans. Dr Stein said I could stop treatment altogether and ‘see how it goes,’ or continue; I’m tolerating it well, I’m going to continue! I, too, am not a candidate for liver resection, so I keep on the5FU and Avastin and tgectumors keep shrinking. I think I am one lucky man.
My advice to you and your wife: keep a positive attitude. I truly think my attitude has helped me thus far. I know it has helped my family deal with this.
please let me know if I can help you at all.
Regards,
Paul
Hello Otto,
I have been seeking second opinions from diffrent doctors, and diffrent hospitals to see if they agree with what Sloan Kettering is saying. I meet with a surgeon who we previously saw and looked at a CD that I had of her CT scan and he could not understand why she was considered in operatable. His plan isto clean out her left side of her liver and send the tumors to a facility in California to test her tumors with chemo and see which one is effective. He wants to infuse the liver directly with the chemo and shrink the chemo. This will serve two purposes, it will clear the left side of her liver, and he wants to see if it will grow back. If it does not grow back he will do the right side tumors in the liver at the same time taking out the adrenal and the colon tumors. He feels the colon is not the priority right now because her bowels are not obstructed, and the liver is the most dangerous.He is giving is hope and plan on switching to him and the hospital he is affiliated with.
Kevin
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colon cancerKevin1224 said:Thank you
Thsnk you PhillieG, the oncologist at Sloan is Dr. Vargesse. She is great, very kind person. While Sloan as said that my wife’s cancer is incurable, and She is not a candidate for operation I have been getting second and upcoming third and forth opinions. I first went to a surgeon who works out of Lenox Hill, but spent time with Cancer of America’s and LIJ. He was the doctor who originally told us to do a colonoscpy. He looked at her scans, and read the reports and could not understand why they said she is not a candidate for surgery. He explained that it looks pretty straight forward and his plan was to take a big chunk of the tumor and send it to a lab to see which chemo is actually effective againt the tumors. This test takes about 3 to 5 weeks fot the results to come back. I actually heard they do this same thing in Greece and it actually has been benificial. Then he said in about 3 to 6 months of the chemo that works the tumors should shrink even more for him to sucessfully clean out the colon, liver and adrenal tumors. Then he said after that we can focus on the bone with radiation and chemo. I am a little confused how one doctors says one thing and the other says another, but at least this sounds like a game plan. Like I said I will be checking with Cancer center of America and MD Anderson to see what they say.
Kevin
Scott Kopetz at MDAnderson is assembling "moonshot" effort for colon cancer.
Could be another source of help.
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Kevin, Please let us know howKevin1224 said:Second opinion
Hello Otto,
I have been seeking second opinions from diffrent doctors, and diffrent hospitals to see if they agree with what Sloan Kettering is saying. I meet with a surgeon who we previously saw and looked at a CD that I had of her CT scan and he could not understand why she was considered in operatable. His plan isto clean out her left side of her liver and send the tumors to a facility in California to test her tumors with chemo and see which one is effective. He wants to infuse the liver directly with the chemo and shrink the chemo. This will serve two purposes, it will clear the left side of her liver, and he wants to see if it will grow back. If it does not grow back he will do the right side tumors in the liver at the same time taking out the adrenal and the colon tumors. He feels the colon is not the priority right now because her bowels are not obstructed, and the liver is the most dangerous.He is giving is hope and plan on switching to him and the hospital he is affiliated with.
Kevin
Kevin, Please let us know how it turns out... Also, if my cancer spreads any further, I will be looking at the clinical trials. They seem to be having a good result, but sometimes they have certain criteria that have to be met before you can get into them. I wouldn't want to wait too long in case I no longer meet the entrance criteria, but it all depends on the trial, and there is a certain unknown risk about participating in a clinical trial over a known treatment. is the surgeon that you are working with from a good facility?
Good Luck to your family!!!!
Barbara
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