New Stage IV Looking for Positive Stories
I am a 45 year old very fit male who was diagnosed with colon cancer in January of 2013. I had been working overseas in Thailand when it was found and came back to the United States for treatment. On 5 Feb I had my right colon resected (no bag thankfully). They removed 47 lymph nodes of which 30 were positive with cancer. Addtionally they found a small spot on my liver and removed it which also came back positive. The exciting part of this was that we thought that was it. But a PET scan less than 4 weeks after the surgery found 3 very subtle spots on my liver and so I'm on FOLFIRI for at least six months. I get my next PET scan the beginning of next month so we are hoping for something positive out of it.
My question is since I'm relatively young and in great shape (exercised twice per day every day before this happened) eat all the right things, and am now juicing and concentrating on increasing my alkaline intake vs acid intake, what are some of the positive stories out there for motivation?
I have a 14 year old son, a 12 year old daughter, and an 8 month old daughter (yep, a young one). They mean the world to me and I want to be there for them for as long as possible.
I was in the Marine Corps, so I am a fighter and certainly no quitter. I feel I can handle whatever is thrown at me. I'm also a God fearing man with a lot of faith in our Lord Jesus.
All of that aside, I would love to hear about some inspiring stories of stage IV survivors and to make life long friends along the way. I'm as loyal as they come and will spill my guts to any who would like to hear.
Cancer may bring us all together, but strength will keep us that way.
Tom
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Hi Tom
Sounds like you are already well on your way...
Loyalty and Spilling My Guts can be found all over this particular forum...my whole life story is here....I've spread it over 3700+ posts:)
You can click on my avatar name to get a brief summary of what I've done...and you can search by username as well...lots of stuff.
I'm a metastatic stage IV...have had cancer 3x now...in just short of 9-years...currently in the longest remissive state of my entire fight...and the battle is being won in the later years of the battle...instead of upfront, where one might expect it.
I know how to fight too...and fight long....and fight hard...in the end, I outlast just about everything. That's the key to winning this cancer battle...Outlast!
Welcome aboard!
-Craig
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Craig,Sundanceh said:Hi Tom
Sounds like you are already well on your way...
Loyalty and Spilling My Guts can be found all over this particular forum...my whole life story is here....I've spread it over 3700+ posts:)
You can click on my avatar name to get a brief summary of what I've done...and you can search by username as well...lots of stuff.
I'm a metastatic stage IV...have had cancer 3x now...in just short of 9-years...currently in the longest remissive state of my entire fight...and the battle is being won in the later years of the battle...instead of upfront, where one might expect it.
I know how to fight too...and fight long....and fight hard...in the end, I outlast just about everything. That's the key to winning this cancer battle...Outlast!
Welcome aboard!
-Craig
It is an honor to meetCraig,
It is an honor to meet you. I really appreciate hearing about your ongoing battle and your amazing attitude towards it. I have no doubt that with heroes like you to lean on I can help lead the next wave of assault on this terrible disease. We will beat it!
Tom
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Hi! I am Stage 3 but I have
Hi! I am Stage 3 but I have a friend who's husband had had stage 4 twice and has Crohn's disease and he has been cancer free for a while now. We must never give up! BTW.....thanks for your service. I'm an Army brat and appreciate all our armed forces.
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Welcome to the Board
I am Stage IV and have been NED for over 4 yrs. I had a tumour on my liver and also my lymph nodes. I had 10 rounds of Folfox + Avastin after which the tumours had disappeared. I was determined not to have a recurrance so I have been doiung everything I can to fight it. My program is:
1. Exercise 3 hrs/day
2. Eat a Mediterranian diet
3. Take the following supplements: aspirin, multivitamin, reviratrol, grape seed extract, Vit D3, fish oil, and Co-Q10.
4. Avoid stress
5. Prayer
6. Visualize my antibodies attacking cancer cells
So far its been working for me. I am 62 and feel great. Good luck in your fight.
Randy
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Very great to hear yourColoncancerblows said:Hi! I am Stage 3 but I have
Hi! I am Stage 3 but I have a friend who's husband had had stage 4 twice and has Crohn's disease and he has been cancer free for a while now. We must never give up! BTW.....thanks for your service. I'm an Army brat and appreciate all our armed forces.
Very great to hear your story. I am so happy that your husband is again cancer free. The fight continues for all of us. I appreciate your acknowledgement of my service, but as an Army brat your involuntary service means as much, if not more, to those in uniform!
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Hi RandyRandy33 said:Welcome to the Board
I am Stage IV and have been NED for over 4 yrs. I had a tumour on my liver and also my lymph nodes. I had 10 rounds of Folfox + Avastin after which the tumours had disappeared. I was determined not to have a recurrance so I have been doiung everything I can to fight it. My program is:
1. Exercise 3 hrs/day
2. Eat a Mediterranian diet
3. Take the following supplements: aspirin, multivitamin, reviratrol, grape seed extract, Vit D3, fish oil, and Co-Q10.
4. Avoid stress
5. Prayer
6. Visualize my antibodies attacking cancer cells
So far its been working for me. I am 62 and feel great. Good luck in your fight.
Randy
Thank you for your response. It is stories such as yours that give real power and belief that this disease is not only manageable, but beatable. Nothing is as strong as the human spirit, especially when we keep God close to our hearts.
I will take your advice, Randy. Exercise is one of my favorite things in life and am now nearly fully able to hit it hard now that I am 2 months post surgery. I don't want to push too hard and risk a sports hernia, but it does feel great to get that heartrate up!
I do take a multivitamin, vitamin C, curcument from tumeric root. I don't know what reviratrol or Co-Q10 are, but I will look them up.
Best of luck to you my friend, and thank you.
Tom
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Tom
I am Stage IV, diagnosed 1 year ago this month. I had chemoradiation, then surgery in June, removed rectal tumor, liver tumor, and gallbladder. I had six months of Folfox, finished in December. I also had 12/23 positive lymph nodes. So far clear scans. Best of luck to you. Sounds like you are on a good path.
Sandy
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welcome
Hi Tom, welcome to the board. It sounds like you have a great positive attitude, and I think you have a decent chance of beating this. My personal story, in a nutshell: dx 3 yrs ago, 600+ CEA, 2/3 of liver tumors. I got the hepatic pump (HAI), did a few complementary things (incl. exercise), and was blessed to have a great response to chemo (no resection), and have been off chemo and no tumor growth for a year now, CEA 1.
Bravo on the exercise (but don't overdo it); lots of evidence that it can improve quality of life and maybe even survival for cancer patients. Also kudos on eating well (I cut way down on excess sugar and processed foods too).
The best and maybe least controversial supplement suggestion I can make for you is to look into taking OTC vitamin d3 - maybe 2k or 3k iu/day - very little downside, and lots of upside studies - just okay with onc first. I do a few other things too, but won't barrage you here. On the other hand, if I were on chemo, I would absolutely avoid supplemental Vit C (which is different from IV vit C) - have heard info (including from MSKCC oncs) that it can actually help protect the cancer cells from the chemo. Also, please don't take offense to this, but the acid vs. alkaline thing is, IMHO, a huge bunch of malarkey...but I will spare you further pontification on that.
Anyway, best of luck to you.
-Chip
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Welcome to the board, Tom.
Wish you didn't have join us, but now that you're here hopefully we can provide some support as you go along. It's not an easy path to walk, but it helps to have companions on the journey. Personally, I have metastatic disease (essentially stage 4 but with an unusual presentation and tumor type so I never got an official staging), with three recurrences. After a couple of years of non-stop surgery (with the addition of cimetidine to the last one-if you do surgery again, worth checking out), I reached remission in Dec. 2011. Last PET in March was still good, so I've had about 15 months of being "cancer-free" (quotation marks because, obviously, we can never be 100% certain). So there is hope, especially if surgery is part of your treatment plan. Good luck, and keep us posted on how you're doing! Ann Alexandria
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Tomannalexandria said:Welcome to the board, Tom.
Wish you didn't have join us, but now that you're here hopefully we can provide some support as you go along. It's not an easy path to walk, but it helps to have companions on the journey. Personally, I have metastatic disease (essentially stage 4 but with an unusual presentation and tumor type so I never got an official staging), with three recurrences. After a couple of years of non-stop surgery (with the addition of cimetidine to the last one-if you do surgery again, worth checking out), I reached remission in Dec. 2011. Last PET in March was still good, so I've had about 15 months of being "cancer-free" (quotation marks because, obviously, we can never be 100% certain). So there is hope, especially if surgery is part of your treatment plan. Good luck, and keep us posted on how you're doing! Ann Alexandria
Just wanted to welcome you to the most wonderful group of folks in the world. I'm the mother to Johnnybegood, another Stage IV colon cancer survivor since 2008 and the wife of a H&N + lung cancer survivor. JBG has been bravely kicking cancer's a$$ for almost five years now. Hubby has just begun his journey.
There is a wealth of information, support and downright love here for you to lean on. Ask anything and one of these warriors will have an answer for you.
Best of luck as you beigin your journey.
Luv,
Wolfen
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Hi Chipgfpiv said:welcome
Hi Tom, welcome to the board. It sounds like you have a great positive attitude, and I think you have a decent chance of beating this. My personal story, in a nutshell: dx 3 yrs ago, 600+ CEA, 2/3 of liver tumors. I got the hepatic pump (HAI), did a few complementary things (incl. exercise), and was blessed to have a great response to chemo (no resection), and have been off chemo and no tumor growth for a year now, CEA 1.
Bravo on the exercise (but don't overdo it); lots of evidence that it can improve quality of life and maybe even survival for cancer patients. Also kudos on eating well (I cut way down on excess sugar and processed foods too).
The best and maybe least controversial supplement suggestion I can make for you is to look into taking OTC vitamin d3 - maybe 2k or 3k iu/day - very little downside, and lots of upside studies - just okay with onc first. I do a few other things too, but won't barrage you here. On the other hand, if I were on chemo, I would absolutely avoid supplemental Vit C (which is different from IV vit C) - have heard info (including from MSKCC oncs) that it can actually help protect the cancer cells from the chemo. Also, please don't take offense to this, but the acid vs. alkaline thing is, IMHO, a huge bunch of malarkey...but I will spare you further pontification on that.
Anyway, best of luck to you.
-Chip
Thanks for the great information and positive attitude. I'm an oddball case when it comes to CEA levels. Mine have always been low. The onc says I fall into the small percentage of folks where CEA is not a good marker. I keep positive and say "hey if it's a low number it's gotta be a good sign!"
My next PET scan is in in 3 weeks so I hope to have some good news from that. I'll keep my exercise up since it's always been a part of my lifestyle anyway.
So I didn't know that info about the vitamin c supplements. I'll talk to my onc about that and lay off of it for now. I certainly don't want to protect the cancer! No offensive taken about the acid vs alkaline debate. More information is good. I welcome all comments, opinions, and suggestions. My perspective was to be sure I'm eating as healthy as possible. So feel free to pontificate away!
Thanks again,
Tom
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Hi SandyMomof2plusteentwins said:Tom
I am Stage IV, diagnosed 1 year ago this month. I had chemoradiation, then surgery in June, removed rectal tumor, liver tumor, and gallbladder. I had six months of Folfox, finished in December. I also had 12/23 positive lymph nodes. So far clear scans. Best of luck to you. Sounds like you are on a good path.
SandySo happy to hear your scans are clear! I pray it remains that way for you! Best of luck to you and thank you for your positive words of support. They mean a lot and give me something to shoot for!
Best of luck
Tom
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Hi Ann Alexandria!annalexandria said:Welcome to the board, Tom.
Wish you didn't have join us, but now that you're here hopefully we can provide some support as you go along. It's not an easy path to walk, but it helps to have companions on the journey. Personally, I have metastatic disease (essentially stage 4 but with an unusual presentation and tumor type so I never got an official staging), with three recurrences. After a couple of years of non-stop surgery (with the addition of cimetidine to the last one-if you do surgery again, worth checking out), I reached remission in Dec. 2011. Last PET in March was still good, so I've had about 15 months of being "cancer-free" (quotation marks because, obviously, we can never be 100% certain). So there is hope, especially if surgery is part of your treatment plan. Good luck, and keep us posted on how you're doing! Ann Alexandria
I thank you for sharing your inspirational story! So sorry you had to endure so many surgeries over a 4 year period. I just pray that your health remains strong and you no longer have to go through that suffering again. I do have hope, and with amazing people such as you sharing your stories of courage and strength, I have inspiration and belief that I too can beat this disease. While I do want to continue to live, it is so much more important to me that I am able to be around for my children during the times they need me the most. Thank you!
Tom
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Hi Wolfenwolfen said:Tom
Just wanted to welcome you to the most wonderful group of folks in the world. I'm the mother to Johnnybegood, another Stage IV colon cancer survivor since 2008 and the wife of a H&N + lung cancer survivor. JBG has been bravely kicking cancer's a$$ for almost five years now. Hubby has just begun his journey.
There is a wealth of information, support and downright love here for you to lean on. Ask anything and one of these warriors will have an answer for you.
Best of luck as you beigin your journey.
Luv,
Wolfen
I am finding that this is an amazing group, just as you say. So happy to hear your son is doing well and remains a survivor. My father was a lung cancer victim so you are in my prayers with your husband. so much more is known today on how to fight this disease.
Thank you for taking the time to reach out to me. It means so much and gives me added strength to carry on.
Tom
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CAM forever, mild chemo
My wife recently exceeded the three year mark, using oral immunotherapies, a lot of CAM treatments based on scientific and clinical reports, and "metronomic" with a mild oral chemo for stage IV. She's in good shape, without the usual side effects, and not chemo/cancer sick. We're optimistic enough to start building a new house.
Two years ago, most surgeons and oncologists had written her off, perceiving a fast spiral out. Our history, click tanstaafl. If you are interested in reading about effective CAM, used with mild chemo maintenance, you might explore some links in my old post.
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Tom,
I was diagnosed stage 4 having 9 of 25 nodes and three spots on the liver at age 41. That was in 2004. I also had a very low CEA right around 1.0 at time of diagnosis. After chemo and RFA I enjoyed about 7 years NED until late 2010 they discovered a recurrence in my liver. Had a liver resection, more chemo and now on year 2 of again being NED. Like you, I had young children (3 boys) at diagnosis who are now 19, 18 and 14. I don't post often, but do like to give hope and encouragement to those just starting their battle. Take care.
Mike
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Welcome to the group... You
Welcome to the group... You will find a lot of helpful members here. I am 46 and I have a 10 year old and a 12 year old. i am a stage 3b ... But aggressive signet ring cell adenocarcinoma ... Appendix cancer. I had a rt hemicolectomy last June and went thru 12 treatments of Folfox last year. I finished up my chemo in January. I just had a CT scan this week...and so far it looks good. My CT scan is going to be reviewed by another radiologist early next week...the onc wants him to compare this CT to one I had back in Dec of 2012. I am also in the process of getting to an appendix cancer specialist ...just trying to decide between Md Anderson and the University of Maryland. I am still in the process of getting my medical records together so that we can schedule the appointment...my oncologist's office is very slow in responding to phone calls.
Alex
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Hi Tom - your story sounds
Hi Tom - your story sounds similar to my husbands. He was diagnosed stage four in August at 46 yrs old. At the time our kids were 14, 12 and 11 months. Now 15, 13 and 18 mos....and 47
He hasn't had surgery yet - will be in a couple of weeks actually. He did the chemo first - folfox plus Avastin. Do they do Avastin with Folfiri? You'll find lots of great people and support here. Any questions, just ask...chances are someone will know the answer!
Good luck in your treatment!
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Welcome to our community. I
Welcome to our community. I have been stage IV for 7 1/2 years and am currently NED for the third time. I was diagnosed at 41 and am also very much into diet and exercise.
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Hi Tom-
Staged at 3c by radiologist in 2006, pending surgeon’s report. Surgeon found reason to stage at 4.
I did imported medical strength Chinese herbs instead of conventional western medicine treatment.
Don’t allow cancer to scare you. Do your homework, listen to self-survival instincts, choose your ammo wisely, and you’ll do OK.
Best hopes for you,
John
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