I'm new and things seem optimistic to me

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ThomasH
ThomasH Member Posts: 106 Member
in Colorectal Cancer #1

Hey everyone,

I've been lurking on here for a couple weeks trying to decide how to introduce myself.

I'm a 48 year old family man with a recently diagnosed stage IV CRC. I've just finished my second dose of chemo (Folfox) and at this point I'm feeling optimistic about things. It is difficult for me to be anything but optimistic because well, that is my nature, but I've had what I THINK are fairly encouraging results, or I could just be crazy.

I've been dealing with this for about 11 months now, and 7 of those I had been misdiagnosed and treated for Chrohn's disease. I'm not convinced the immunosuppressives I was taking did my cancer any good. In April, I finally had surgery to remove what they thought was a Chrohn's related bowel obstruction, but was later determined to be a tumor. Going along for that ride, the surgeon also took out 14 lymph nodes, cancer in 3, and about 15 pinhead sized tumors out of the peritonium tissue. I also became the dubiously proud owner of a new ileostomy, as many of you will appreciate.

I've been fortunate that my team of Drs seems to be really agressive in going after this now that they know what I have. I wasn't at all happy that my onc talks about me being paliative and not curative, but I understand that is how they think of this. I'm doing 12 sessons of the chemo, once every 2 weeks. I'm also scheduled for a peritonial stripping and HIPEC procedure once I'm finished the chemo. Unlike the onc, the surgical team things the procedure could be POTENTIALLY curative, but of course no sure things there. Nothing new to any of you I know, but all new things to me.

Where my encouragement comes in is in the test results. I've had 2 colonoscopies, 5 CT scans and one PET scan, none of which show any signs of the cancer. I know that just means it is too small to detect, not that it magically vanished. My CEA is sitting at 1.2, which is also good I think. Aside from feeling a little sick and tired from the chemo, I feel healthy.

Outside of my chemo I've turned vegan, I drink vegetable juice (mostly carrot, like 2.5 lbs a day) I take B17 1500Mg, and 8 grams of curcumin with piperine, lots of D3, and a stack of other things that seem to have a reasonable clinical basis behind them for supporting the other things I take. It really feels like what I'm doing is going in the right direction for me, but it is tough to allow that hope because I know this kind of cancer is a tough one.

I'm happy that there seems to be so little to detect, but it is tough for me because I also don't have anything to measure progress. Does anyone else have experience like me? How normal is it to have this so hard to detect and still be labeled stage IV?

Comments

  • NewHere
    NewHere Member Posts: 1,427 Member
    #2
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    Welcome

    Sorry to have you here, but it is a good place to be.  

    I was Stage IIIC, 11 out of 20 lymph nodes had cancer, was through to the peritonium.  I did get a clean margin report from pathology, they took out everything.  6 Months of chemo.  Scans had many suspect spots, but as of the last scan, my Oncologist thinks just usual blips and blobs and kicking out to 6 month scans.  (And my scans all had the small too to say sure reports.)  My CEA is still high a year and a half-out, 4.8.  At its high about 8.8.

    As to Stage IV, there are many Stage IV here.  The initial diagnosis is the Staging and there is something that made you Stage IV.  I am not an expert, but the lymph nodes and going into the peritonium tissue does not have to mean Stage IV?  Was it confirmed as distant site?  (Or distant  peritonium?)

    http://www.cancer.org/cancer/colonandrectumcancer/detailedguide/colorectal-cancer-staged

    And as to all of it, do not get bogged down in Stages and stats. You have the right attitiude.  And if need be, find another doctor for some second opinions.

     

     

  • zx10guy
    zx10guy Member Posts: 273 Member
    edited July 2016 #3
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    Sorry you have to be here.

    Sorry you have to be here.  Did you happen to get a CEA test done before your surgery and chemo treatments?

  • ThomasH
    ThomasH Member Posts: 106 Member
    #4
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    zx10guy said:

    Sorry you have to be here.

    Sorry you have to be here.  Did you happen to get a CEA test done before your surgery and chemo treatments?

    My Onc never did do a CEA

    Which I thought was a little odd. I know it isn't a for sure test for everyone, but a lot of you talk about it. I had an appointment with the surgeon who did all my work and I talked to him about the CEA. He is the one who actually gave me the req to have that test done, otherwise I wouldn't know where I stand. I would have been nice to have it done before the surgery, but at that point nobody knew what I was looking at.

  • ThomasH
    ThomasH Member Posts: 106 Member
    #5
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    NewHere said:

    Welcome

    Sorry to have you here, but it is a good place to be.  

    I was Stage IIIC, 11 out of 20 lymph nodes had cancer, was through to the peritonium.  I did get a clean margin report from pathology, they took out everything.  6 Months of chemo.  Scans had many suspect spots, but as of the last scan, my Oncologist thinks just usual blips and blobs and kicking out to 6 month scans.  (And my scans all had the small too to say sure reports.)  My CEA is still high a year and a half-out, 4.8.  At its high about 8.8.

    As to Stage IV, there are many Stage IV here.  The initial diagnosis is the Staging and there is something that made you Stage IV.  I am not an expert, but the lymph nodes and going into the peritonium tissue does not have to mean Stage IV?  Was it confirmed as distant site?  (Or distant  peritonium?)

    http://www.cancer.org/cancer/colonandrectumcancer/detailedguide/colorectal-cancer-staged

    And as to all of it, do not get bogged down in Stages and stats. You have the right attitiude.  And if need be, find another doctor for some second opinions.

     

     

    I'm pretty sure it was because of the spread to the peritonium

    I'm definitely no expert either, but i believe my staging was because of that spread or it could be because of the way that it was poorly differenciated. They talked about that part as well. I also had a clean margin on both sides, so with luck that will still be present come January when they are talking about hooking me back together as part of that whole HIPEC deal. The ileostomy gets old really quickly.

    It is good to see people posting on here with longer times since their join dates. I try not to pay attention to the numbers and stats, but I'm a professional nerd, so I'm naturally attracted to numbers and such.

    I just have to keep repeating that those numbers are not MY numbers.

     

  • zx10guy
    zx10guy Member Posts: 273 Member
    #6
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    ThomasH said:

    My Onc never did do a CEA

    Which I thought was a little odd. I know it isn't a for sure test for everyone, but a lot of you talk about it. I had an appointment with the surgeon who did all my work and I talked to him about the CEA. He is the one who actually gave me the req to have that test done, otherwise I wouldn't know where I stand. I would have been nice to have it done before the surgery, but at that point nobody knew what I was looking at.

    That's unfortunate.  Not

    That's unfortunate.  Not placing blame on anyone about not having one done before surgery and chemo.  But it would have given you a sense on whether CEA is a good marker for you.  There are some people who are Stage 4 from the start with CEA levels in the normal range.  Those individuals know chances are they will not see any appreciable indication of anything happening by monitoring their CEA levels.

    For me, I almost didn't get my CEA test done before surgery due to being just overwhelmed with everything.  For me, CEA is a good indicator of issues.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #7
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    Welcome but I wish we didn't

    Welcome but I wish we didn't have to welcome you to this board. The club that nobody wants to join. I'm a little surprised they called your treatment palliative. Of course, that can change and different doctors have different opionions. I was diagnosed a stage three because of three of the lymph nodes out of 11 being involved. Then I had mets in my lung earlier this year which I'd think makes me a stage four but they don't change the initial staging, apparently. Whatever, that really makes no difference, anyway.

    A positive attitude is the best thing you can do for yourself. It definitely helps with the immune system. And the body can fight off low numbers of cancer cells and prevent them from becoming bigger. Not to mention that a negative attitude will just suck the joy out of every day you have, whether it's for the next 30 years or less than that.

    I didn't even know about CEA levels untl I got on this forum and that was well into my treatment. I should ask what it was before the surgery, chemo and radiation. I do know that it's not much of an indicator for me as it's been less than 2 the whole time I had the lung mets, about 1,7 or 1.8. My surgeon told me last time not to bother getting the regular blood tests for it because it isn't accurate for me so maybe it was low at the beginning as well. 

    Good luck with your continuing treatments. I hope to see you on here for a very long time.

    Jan

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #8
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    Welcome, I can't say with

    Welcome, I can't say with certainty, but I think oncs automatically switch to talking about palliative care when the staging reaches four, so I wouldn't let that throw you. Sounds to me like your in a good spot if it isolates to the peritoneum, just need to zap those little seeds as they may pop up. I hope the cea is a good indicator for you, it can be unnerving at times, but it also gave me something to hold onto when they were PET scanning the heck out of me. Sounds like you've got a good atittude and calm outlook, and those things will serve you well on this "trip"..............................................Dave

  • ThomasH
    ThomasH Member Posts: 106 Member
    #9
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    JanJan63 said:

    Welcome but I wish we didn't

    Welcome but I wish we didn't have to welcome you to this board. The club that nobody wants to join. I'm a little surprised they called your treatment palliative. Of course, that can change and different doctors have different opionions. I was diagnosed a stage three because of three of the lymph nodes out of 11 being involved. Then I had mets in my lung earlier this year which I'd think makes me a stage four but they don't change the initial staging, apparently. Whatever, that really makes no difference, anyway.

    A positive attitude is the best thing you can do for yourself. It definitely helps with the immune system. And the body can fight off low numbers of cancer cells and prevent them from becoming bigger. Not to mention that a negative attitude will just suck the joy out of every day you have, whether it's for the next 30 years or less than that.

    I didn't even know about CEA levels untl I got on this forum and that was well into my treatment. I should ask what it was before the surgery, chemo and radiation. I do know that it's not much of an indicator for me as it's been less than 2 the whole time I had the lung mets, about 1,7 or 1.8. My surgeon told me last time not to bother getting the regular blood tests for it because it isn't accurate for me so maybe it was low at the beginning as well. 

    Good luck with your continuing treatments. I hope to see you on here for a very long time.

    Jan

    Thanks Jan

    As you say, the club sucks a little, but the company is exceptional. It is good to have someplace that I can talk to people who know exactly where I'm coming from because I'm sure you have all been where I'm coming from.

    I hope I will be seeing all of you for a good long time.

  • John23
    John23 Member Posts: 2,122 Member
    edited July 2016 #10
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    ThomasH said:

    Thanks Jan

    As you say, the club sucks a little, but the company is exceptional. It is good to have someplace that I can talk to people who know exactly where I'm coming from because I'm sure you have all been where I'm coming from.

    I hope I will be seeing all of you for a good long time.

    Club membership

    Club membership

    Yeah, excitement and education 24/7!

    I just found out that cancer in rodents is hereditary. That's a breakthrough. California will have to re-write some of their anti-carcinogenic legislation, I suppose. I never did believe eating a California license plate would cause cancer. I never did, just to be safe however.

    Yes, welcome here! I truly wish you didn't have any need to be here, but welcome to the board.

    As always recommended, try to remain anonymous. Lots of "strange" people out there! A newfound "friend" can offer great remedie$ "off-line"; not much different than any other on-line fraternity (YaaaaHooo?).

    And of course, double check all data. If it sounds too good to be true, it's probably a political advertisement. (ha) (Trump that one).

    Enjoy it all.

    And do your best to get better, or at least  stay as healthy as you can under the circumstances.

    My best hopes for you,

    John

     

  • ron50
    ron50 Member Posts: 1,723 Member
    #11
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    welcome

         When I was diagnosed It was as stage 3c . It was a very aggressive cancer but not very large. The field that was removed contained only thirteen regional lymph nodes and six or them were cancerous. My surgeon was a little unsure if the cancer had invaded the fatty tissue where the flange joins the body. He said it is very difficult to tell cancer from normal fatty tissue. It would seem that he did a good job. Despite his insistence that it would most likely get me I am still alive nearly nineteen years later. I wish you well with your treatment and the one statistic that most don't take notice of is that more than a few of us fall thru the cracks and are left alone by cancer. All the best Ron.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #12
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    LIKE for Ron's post above.

    LIKE for Ron's post above.

  • traci43
    traci43 Member Posts: 773 Member
    #13
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    initial stage 4 with mets to peritoneum

    Hi there - I too was diagnosed as stage IV with mets to the peritoneum and ovaries.  I only had 1 of 20 odd lymph nodes test positive for cancer in 2007 (original diagnosis).  I've had some recurrences and three additional surgeries including HIPEC in 2009.  You're right, you were considered stage IV because it had spread to the peritoneum.  I too had an oncologist that talked like it was more pallative than curative.  I stayed with him through the first go round and dumped his a$$ for someone that would fight with me when it recurred.  Now I'm 2 years NED.  Staying positive helps as does the eating right and taking supplements, IMHO.  You'll find people on here that have tried various routes to beat cancer (chemo, various surgeries, chinese medicine, mind-body techniques).  They are a wealth of information and happy to help.  I, too, welcome you to this group and wish you all the best as you tackle things.  Traci 

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