New to board - stage IV colon cancer diagnosis

Lizzie16
Lizzie16 Member Posts: 7
in Colorectal Cancer #1

Hello everyone,

I was diagnosed with stage IV colon cancer in Feb 2015 (I had just completed treatment for breast cancer in 2014, having undergone left breast mastectomy in 2014)  I was having some abdominal pain but nothing too severe.  My oncologist noted that one of my lab reports (Alk Phos) was elevated and after CT scan and MRI, my stage IV diagnosis was confirmed.  I coulnd't believe it, thought I was done with cancer.  I had two small tumors in left side of liver and four or five tumors in right side of liver, largest was 3 cm.  I underwent laproscopic surgery for removal of the two small tumors from the left side of my liver followed by embolization in an attempt to cut off the blood supply to the tumors in the right side of liver.  My surgeon was hoping that my left liver would grow; unfortunately, that did not hapen .  I had approx 5 months of chemo, Folfox, which shrank the tumors dramatically.  My surgeon felt he could remove the tumors in my right side of the liver and I was scheduled for surgery in Aug 2015.  When surgeon opened me up, he could not find any cancer at all.  I was ecstatic and thought my worries were over.  I underwent colon surgery in Jan 2016 and 2 cm tumor was removed from colon.  CT scan in March 2016 found a small tumor in right liver had returned and I was again put on Folfox.  Next CT scan three months later found no cancer, and I was put on maintenance chemo.  CT scan in Nov found a small (about one inch) tumor in right side of liver and I was put on chemo, Irinotecan and Cetuximab.  I was very discouraged and asked my oncologist how much time I had left - she told me approx one to two years!!  I was devastated and wished I had never asked her that question.  I am scheduled for radioembolization in January where radiation beads are infused directly into my tumor.  The radiologist told me that radiofrequency ablation has a better result but that because my tumor was close to my lungs they did not feel safe doing that procedure.  After reading about cancer treatment, I wish my surgeon would have found some cancer during my Aug 2015 resection so that he could have removed it.  Sounds like the best way to beat this thing is with surgery.  My previous surgeon is no longer in town and the new surgeon said surgery is out because my left liver doesn't grow.  However I am considering finding another surgeon who could remove the tumor.  I would love to hear any thoughts from others.  I live in Minnesota and thinking of getting a second opinion from the Mayo Clinic.  I have just one small tumor in the right side of my liver - my two small areas in left side have not returned.  From reading some of the blogs here, people have had up to 70 percent of their liver removed so I don't understand why they can't remove my one small tumor, unless the location is the problem.  Any suggestions?

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited December 2016 #2
    Wow, you've been through a

    Wow, you've been through a roller coaster! I know very little about liver involvement, I'm sorry. Good luck with your search for information.

    Jan

  • E.Ketrick
    E.Ketrick Member Posts: 1
    #3
    my colon cancer

    I just made a lengthy post on a rare colon cancer I listed many things I do to saty alive but forgot to mention the essential oils diffuser that I use on top of everything else.  Mainly I use Frankincense to try and shrink my non cancerous pituitary tumor.  On my MRI after using it through the summer the tuor had shrunk some.  I got a better quality Frankincense and can tell a big difference.  I started taking cats claw extract and using brown seaweed supplements among countless other things I do. Search under rare colon cancer on this site and read my last post for some of the other things I do.  I really feel that chemo and radiation did more harm than good but I was willing to try anything.  I am also stage 4.  This is my third reoccurance. Good luck with your search, there's a lot of good information out there.

  • Lizzie16
    Lizzie16 Member Posts: 7
    edited December 2016 #4
    Thanks Jan and E.Ketrick for

    Thanks Jan and E.Ketrick for your responses and good luck wishes.  I've read through alot of the colon cancer discussion board and the people seem terrific and very well informed.   I will search under rare colon cancer for your comments, E.Ketrick.  I am eating as healthy as I can (plant based diet) with no sugar, which is really hard for me.  I love wine but limit myself to two glasses a week (which my oncologist said is ok) I am willing to try anything - my oncologisyt has said she will certify me for medical marijuana and I think I will try that because I have heard some people say they've been cured with cannabis oil.  There is no proof that this is true but I'm willing to try it. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited December 2016 #5
    Lizzie, I'm going to address

    Lizzie, I'm going to address this because I hate to see someone going without something in case it works when it doesn't. Don't deny yourself sugar. If you're fine without eating excess amounts, fine. I'm someone who rarely eats chocolate, never eats donuts or baked goods, I'm really not a sugar person at all. Except for Pepsi. That's my Jones. I don't drink lots of it but I must have a can or two a day. Cancer cells do use more sugar than healthy cells do but it's impossible to starve it out. To reduce your sugar intake to the point where it might possibly affect the cancer would also starve your healthy cells. It can't be done. So please do not siallow yourself something if it makes you happy in case it will help you battle cancer, it won't.

    Tha cannabis is something I don't believe in, either. I think it's helpful for appetite issues and making a person feel better overall but I've seen nothing genuine to suggest that it can actually kill cancer cells. I'm sorry. When I post things like this I feel like maybe I'm dashing someone's hope and that's something I'd never want to do to anyone. But I'm also against false hope and either denying themselves something that they enjoy or spending money on things that don't work.

    There are many things and ideas out there that are supposed to help us fight cancer but most are a waste of time and money. There are plenty of things that will kill cancer cells but getting them to the cells without doing damage to other healthy cells is the issue. One of the things I'll say to people when we discuss it is that Windex would likely kill a petrie dish full of cancer cells but how is that helpful? Until they can find something that targets the cancer cells only our best defense is not very palatable. Surgery then radiation and/or chemo. Its the sad truth.

    We all hear about people who have beat cancer or survived longer than they ought to have and often they've done something that they attribute it to. I think of it like the old belief that if you whistled while walking past a graveyard the ghosts will not come and get you. If you do it and no ghosts come then you think it worked. I was addicted to broccoli for some time. If I've beaten my cancer I could say that's why. Eat broccoli! But I was also addicted to LoveHeart candies at the same time. I beat my cancer eating LoveHearts! I remember telling my daughter that's what I was going to tell people. If you want proof of cannabis not working take a look at Tommy Chong.

    The fact is that its different for everyone and many people wll live much longer than they ought to or will beat their cancer. Who knows why that is. Why did they get it to start with? Nobody knows. The right circumstances at the right time, that's it. The luck or the bad luck of the draw, nothing more. My friend is a lifelong vegetarian and has been mostly vegan as well for about 10 years. She had breast cancer a couple of years ago. It would be comforting to think we had some sort of control over all of this but we really don't. My grandmother had colon cancer before they even had chemo so she only had surgery to remove it. She passed away over 30 years later in her early eighties and did not die of cancer.

    Sorry this is so long. I just hate hearing of someone not enjoying the things they like in the hope it will have an effect on their cancer when it won't make any difference.

    Best of luck with everything!

    Jan

  • zx10guy
    zx10guy Member Posts: 273 Member
    #6
    Lizzie,

    Lizzie,

    Sorry you're going through all of this.  I can only offer a couple of things for you.

    1) I know this place is far from where you live, but please see if you can get Dr. Nancy Kemeny at MSKCC in NYC to review your case.  She is one of the top doctors in the country in colorectal cancer.  She pioneered the use of Oxaliplatin with 5FU which is now known as FOLFOX; now the standard of care/first line chemo for CRC.  She has also pioneered the use of the HAI pump where 5FU is pumped directly into the liver.  There are those who were given no hope but are now alive because of Dr. Kemeny and the HAI pump.

    2) There have been all sorts of alternative treatments suggested among cancer patients.  But here is one thing that doesn't require you to take any herbs or the like.  It just requires you to fast during your chemo treatments.  There has been some scientific studies tracking the use of fasting in gaining better results with chemo.  Here is a link to a blog by Tom Marsilje discussing the science of fasting:

    https://adventuresinlivingterminallyoptimistic.com/2016/09/29/chemo-in-the-fast-lane/

    Tom is a cancer researcher and ironically is living with Stage 4 colon cancer.  So in a sense he is working to find a cure for himself.  In the blog entry, he also discusses how he did with fasting.

    I hope I was a little bit of help for you.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #7
    I think I'd go to the Mayo

    I think I'd go to the Mayo Clinic, you need the best treatments, like the HAI pump some here have had, and swear by. I'm wondering why your doctors never ordered a PET scan to follow up the CT scans that didn't show any signs of cancer. You've been through alot, with being told your clear only to have multiple mets at the next scan. I think I'd be looking for a more consistent approach to treatment............................Dave

  • Lizzie16
    Lizzie16 Member Posts: 7
    edited December 2016 #8
    Thanks everyone for your

    Thanks everyone for your thoughts.  At this point, I'm leaning towards going to Mayo.  Will keep you updated.

  • Lizzie16
    Lizzie16 Member Posts: 7
    #9
    zx10guy said:

    Lizzie,

    Lizzie,

    Sorry you're going through all of this.  I can only offer a couple of things for you.

    1) I know this place is far from where you live, but please see if you can get Dr. Nancy Kemeny at MSKCC in NYC to review your case.  She is one of the top doctors in the country in colorectal cancer.  She pioneered the use of Oxaliplatin with 5FU which is now known as FOLFOX; now the standard of care/first line chemo for CRC.  She has also pioneered the use of the HAI pump where 5FU is pumped directly into the liver.  There are those who were given no hope but are now alive because of Dr. Kemeny and the HAI pump.

    2) There have been all sorts of alternative treatments suggested among cancer patients.  But here is one thing that doesn't require you to take any herbs or the like.  It just requires you to fast during your chemo treatments.  There has been some scientific studies tracking the use of fasting in gaining better results with chemo.  Here is a link to a blog by Tom Marsilje discussing the science of fasting:

    https://adventuresinlivingterminallyoptimistic.com/2016/09/29/chemo-in-the-fast-lane/

    Tom is a cancer researcher and ironically is living with Stage 4 colon cancer.  So in a sense he is working to find a cure for himself.  In the blog entry, he also discusses how he did with fasting.

    I hope I was a little bit of help for you.

    Dr Kemeny

    I took your suggestion and googled Dr. Kemeny and was very impressed with what she is doing.  Thanks for the suggestion.  I will try and see if she will review my case. 

     

  • Jeff's mom
    Jeff's mom Member Posts: 20
    #10
    Unable to take Oxaliplatin

    I am new to this site but I'm glad I found it.  I was diagnosed with Signet Ring Cell colon cancer and had surgery in March of this year.  In May I was started on 5FU and Oxaliplatin.  During my second treatment I had an anaphylactic reaction and the Oxali was stopped.  I went on to have 6 months of 5FU, but that, too, has ended.  My Oncologist says there's nothing more that can be done.  He told me I have very little time left because my CEA is 293.  Does anybody have any input or ideas about what to do now?  Thanks very much.

     

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #11
    Jeff's mom said:

    Unable to take Oxaliplatin

    I am new to this site but I'm glad I found it.  I was diagnosed with Signet Ring Cell colon cancer and had surgery in March of this year.  In May I was started on 5FU and Oxaliplatin.  During my second treatment I had an anaphylactic reaction and the Oxali was stopped.  I went on to have 6 months of 5FU, but that, too, has ended.  My Oncologist says there's nothing more that can be done.  He told me I have very little time left because my CEA is 293.  Does anybody have any input or ideas about what to do now?  Thanks very much.

     

    Nothing more......

    I don't think so. 

    I think you should go looking for a second and third opinoin. There are many options out there, lots of different chemo cocktails. I'd go looking for an Oncologist who is willing to try you on another form of chemo. 

    I am glad you have found this site as well. You will find much support. 

    May I suggest you introduce yourself on our main page. That way, we can keep this thread open for replies to Lizzie. You can access the Colorectal forum's page here http://csn.cancer.org/forum/128.

    TRU

  • nateswife
    nateswife Member Posts: 65 Member
    #12
    JanJan63 said:

    Lizzie, I'm going to address

    Lizzie, I'm going to address this because I hate to see someone going without something in case it works when it doesn't. Don't deny yourself sugar. If you're fine without eating excess amounts, fine. I'm someone who rarely eats chocolate, never eats donuts or baked goods, I'm really not a sugar person at all. Except for Pepsi. That's my Jones. I don't drink lots of it but I must have a can or two a day. Cancer cells do use more sugar than healthy cells do but it's impossible to starve it out. To reduce your sugar intake to the point where it might possibly affect the cancer would also starve your healthy cells. It can't be done. So please do not siallow yourself something if it makes you happy in case it will help you battle cancer, it won't.

    Tha cannabis is something I don't believe in, either. I think it's helpful for appetite issues and making a person feel better overall but I've seen nothing genuine to suggest that it can actually kill cancer cells. I'm sorry. When I post things like this I feel like maybe I'm dashing someone's hope and that's something I'd never want to do to anyone. But I'm also against false hope and either denying themselves something that they enjoy or spending money on things that don't work.

    There are many things and ideas out there that are supposed to help us fight cancer but most are a waste of time and money. There are plenty of things that will kill cancer cells but getting them to the cells without doing damage to other healthy cells is the issue. One of the things I'll say to people when we discuss it is that Windex would likely kill a petrie dish full of cancer cells but how is that helpful? Until they can find something that targets the cancer cells only our best defense is not very palatable. Surgery then radiation and/or chemo. Its the sad truth.

    We all hear about people who have beat cancer or survived longer than they ought to have and often they've done something that they attribute it to. I think of it like the old belief that if you whistled while walking past a graveyard the ghosts will not come and get you. If you do it and no ghosts come then you think it worked. I was addicted to broccoli for some time. If I've beaten my cancer I could say that's why. Eat broccoli! But I was also addicted to LoveHeart candies at the same time. I beat my cancer eating LoveHearts! I remember telling my daughter that's what I was going to tell people. If you want proof of cannabis not working take a look at Tommy Chong.

    The fact is that its different for everyone and many people wll live much longer than they ought to or will beat their cancer. Who knows why that is. Why did they get it to start with? Nobody knows. The right circumstances at the right time, that's it. The luck or the bad luck of the draw, nothing more. My friend is a lifelong vegetarian and has been mostly vegan as well for about 10 years. She had breast cancer a couple of years ago. It would be comforting to think we had some sort of control over all of this but we really don't. My grandmother had colon cancer before they even had chemo so she only had surgery to remove it. She passed away over 30 years later in her early eighties and did not die of cancer.

    Sorry this is so long. I just hate hearing of someone not enjoying the things they like in the hope it will have an effect on their cancer when it won't make any difference.

    Best of luck with everything!

    Jan

    I Second that

    Excellent post, Jan. It's a great summary of why not to believe all the wa-hoo ideas that one can find in the Internet. I'd like to print your reply, make 100 copies and start handing them to well meaning but exhausting people who say to me "Well I know someone with cancer who had amazing results with green barley juice..." or whatever. 

    I'm about to fight cancer with some pecan pie :) Hey, if I'm doing something that makes me enjoy life and want to live, then imo that's fighting cancer.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited December 2016 #13
    nateswife said:

    I Second that

    Excellent post, Jan. It's a great summary of why not to believe all the wa-hoo ideas that one can find in the Internet. I'd like to print your reply, make 100 copies and start handing them to well meaning but exhausting people who say to me "Well I know someone with cancer who had amazing results with green barley juice..." or whatever. 

    I'm about to fight cancer with some pecan pie :) Hey, if I'm doing something that makes me enjoy life and want to live, then imo that's fighting cancer.

    Thanks! And you're right! We

    Thanks! And you're right! We need to stay positive and if pecan pie helps with that then go for it! Enjoy!

    Jan

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