26 diagnosed with stage 4 cancer.

honniebear66
honniebear66 Member Posts: 1
in Colorectal Cancer #1
I'm 26 years old. I have gardners syndrome. Which causes colorectal cancer. I was diagnosed with it and it has spread to my lungs. I'm going through the 5FU chemo treatment. I'm on round two right now, and going into #3 next week. I'm stage 4 and scared. I feel very alone. I have wonderful support with family and friends. But being so young and not knowing anyone else that has gone through this I was hoping to find some other people who might be going through the same thing...

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #2
    Sorry
    So sorry to hear of your diagnosis. Here you will find others who have been where you are at and we are here to help you through this journey. It will be a rollercoaster of activity. You have a right to be scared. So good to hear that you have support behind you, that is an important thing. Come here and ask questions, share your feelings, and if you need to, just vent. We are here for you.

    Kim
  • maglets
    maglets Member Posts: 2,576 Member
    #3
    Annabelle41415 said:

    Sorry
    So sorry to hear of your diagnosis. Here you will find others who have been where you are at and we are here to help you through this journey. It will be a rollercoaster of activity. You have a right to be scared. So good to hear that you have support behind you, that is an important thing. Come here and ask questions, share your feelings, and if you need to, just vent. We are here for you.

    Kim

    hello and welcome.
    You are so young....I am so so sorry you are facing this. I too am stage4 but so much older than you are.

    Are you having any trouble with the 5FU and side effects from that chemo??

    maggie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #4
    maglets said:

    hello and welcome.
    You are so young....I am so so sorry you are facing this. I too am stage4 but so much older than you are.

    Are you having any trouble with the 5FU and side effects from that chemo??

    maggie

    Howdy.....
    Yes...it sucks at any age but dang...26 is sooooo young. I too am stage IV and we all know how you are feeling. You WILL NOT be alone here. Talk to us about anything....ANYTHING.

    Jennie
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #5
    welcome
    Hello,

    I'm sorry to hear you're going through stage IV at your young age. I had just turned 41 when I was diagnosed stage IV w/ mets to my liver and both lungs. Also considered young to get it, considering they don't normally start screening for it until age 50.

    I have a question- are you only taking 5FU, or are you also taking oxaliplatin (also called Eloxatin, part of the Folfox regimen) or irinotecan (also called Camptosar or CPT-11, part of the Folfiri regimen)? The reason I ask is because Folfox or Folfiri with those extra drugs I just mentioned is standard treatment for stage IV colon or colorectal cancer. If you're truly only taking 5FU (along with the premeds and leucovorin for absorption), then you should talk to your oncologist right away, as you really should be getting more.

    You will also find if you read all the posts here on our board, that several people do alternative things and/or natural supplements to help support their immune system. Some do it while on chemo & some do instead. It's just something to read about, look into, and see if it might be right for you. Or it may be too overwhelming at this point for you to even think about. Some oncologists are totally opposed to any supplements and some are fairly open to it. My own oncologist has been pretty supportive for whatever I've wanted to do, as long as I could show him my research as to why I thought it would be good to do. In most cases, he agreed with me, but there were a couple of things he did ask me not to do. In general, most drs. now realize the importance of vitamin D and realize the recommended amount is far too low. I take between 8-10 IU of vitamin D a day. I take it in the liquid form (found at healthfood stores) because it absorbs easier & that makes less pills to swallow, as well. There have also been studies on taking cimetidine (Tagamet) for helping to prevent further metastasis and also turmeric (as a blood purifier and one study showed that it helped certain chemos to work more efficiently- 5FU was one of the ones that I remember being listed). One last thing- for a while I had trouble with my blood red cell counts and platelet counts going too low. Once I discovered that taking capsules of chlorella and/or spirulina helps(found in vitamin/herb section), my counts have been normal each time. My onc said he never heard of taking those for that, but he saw for himself how it helped my counts, so he told me to keep doing what I was doing.

    Blessings to you-
    Lisa
  • janie1
    janie1 Member Posts: 753 Member
    #6
    lisa42 said:

    welcome
    Hello,

    I'm sorry to hear you're going through stage IV at your young age. I had just turned 41 when I was diagnosed stage IV w/ mets to my liver and both lungs. Also considered young to get it, considering they don't normally start screening for it until age 50.

    I have a question- are you only taking 5FU, or are you also taking oxaliplatin (also called Eloxatin, part of the Folfox regimen) or irinotecan (also called Camptosar or CPT-11, part of the Folfiri regimen)? The reason I ask is because Folfox or Folfiri with those extra drugs I just mentioned is standard treatment for stage IV colon or colorectal cancer. If you're truly only taking 5FU (along with the premeds and leucovorin for absorption), then you should talk to your oncologist right away, as you really should be getting more.

    You will also find if you read all the posts here on our board, that several people do alternative things and/or natural supplements to help support their immune system. Some do it while on chemo & some do instead. It's just something to read about, look into, and see if it might be right for you. Or it may be too overwhelming at this point for you to even think about. Some oncologists are totally opposed to any supplements and some are fairly open to it. My own oncologist has been pretty supportive for whatever I've wanted to do, as long as I could show him my research as to why I thought it would be good to do. In most cases, he agreed with me, but there were a couple of things he did ask me not to do. In general, most drs. now realize the importance of vitamin D and realize the recommended amount is far too low. I take between 8-10 IU of vitamin D a day. I take it in the liquid form (found at healthfood stores) because it absorbs easier & that makes less pills to swallow, as well. There have also been studies on taking cimetidine (Tagamet) for helping to prevent further metastasis and also turmeric (as a blood purifier and one study showed that it helped certain chemos to work more efficiently- 5FU was one of the ones that I remember being listed). One last thing- for a while I had trouble with my blood red cell counts and platelet counts going too low. Once I discovered that taking capsules of chlorella and/or spirulina helps(found in vitamin/herb section), my counts have been normal each time. My onc said he never heard of taking those for that, but he saw for himself how it helped my counts, so he told me to keep doing what I was doing.

    Blessings to you-
    Lisa

    Stage 4
    Stage 4 here, too. Yes, definitely ask anything you need to. Glad to hear you have a supportive family and friends....now you have even more supportive "family". We are all in this together. We are always researching, and looking to see what we may benefit from now, and, in the future. It's scary, especially at first, your mind goes in a million directions, but it does get better, and you get focused on what needs to be done. We all have questions, and more questions, and there is usually someone who has some specific knowledge on just about any topic.
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #7
    Honniebear,
    From what I understand of Gardner's, CRC is a symptom rather than the primary disease. I can say that in my short time here, you are the first person I am aware of that has it.

    There is an active Yahoo group: Gardener's Syndrome Yahoo Group

    Many of the folks there should be going through the same things you are, and it may turn out to be a better resource than our group. That said, for advice on how to deal with the standard CRC treatments CSN could be a great resource for you.

    So sorry you are having to go through this,

    Blake
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #8
    Buckwirth said:

    Honniebear,
    From what I understand of Gardner's, CRC is a symptom rather than the primary disease. I can say that in my short time here, you are the first person I am aware of that has it.

    There is an active Yahoo group: Gardener's Syndrome Yahoo Group

    Many of the folks there should be going through the same things you are, and it may turn out to be a better resource than our group. That said, for advice on how to deal with the standard CRC treatments CSN could be a great resource for you.

    So sorry you are having to go through this,

    Blake

    Welcome to the board!
    Don't hesitate to ask for anything you may need , you will find a big group of experienced people that will give you answer to your questions as well a group of friend that will share your fears but also you will find moments of fun and happiness again welcome to your new cyberfamilly!
    God bless you.
    Pepe ,Barcelona.
  • christinecarl
    christinecarl Member Posts: 543 Member
    #9
    I am sorry about your
    I am sorry about your diagnosis, it can feel very isolating at 1st and the first few months are down right scary. You will find lots of support here, feel free to ask any question or just post to vent. You can also try going to the colonclub.com they have many young people there too.

    {{hugs}}

    -Chris
  • NJC
    NJC Member Posts: 73 Member
    #10
    I am very sorry to hear of
    I am very sorry to hear of your plight! My wife was diagnosed last September with Stage IV with 20 liver mets at the age of 33. Her's was not heriditary, but she is KRAS mutant with mucinious tumors which makes treating recurrence very tricky. Luckily, her Surg Onc is one of the very best in the county and places such as Sloan, etc. refer their patients to him for treatments.

    We are very fortunate that she has responded better than they ever would have imagined. In fact, she's been off of chemo for the past 6m, but had to undergo some radiation for an aortic lymph node.

    She was on FOLFOX with Avasin which she tolerated well and had the Isolated Hepatic Perfusion and Hepatic Arterial Infusion pump placement for a Phase 1 Oxaliplatin trial.

    Things have been tough but we both realize that no matter how much you worry, it's not going to solve anything. In the end, it will be what it will be for better or worse, and we're praying for the latter. Point being, take some time to come to terms with your recent diagnosis and then continue to LIVE your life. And remember, numbers are just that...numbers! Don't fall victim to the 8%, or what ever it is now. There are a lot of folks on this board who probably shouldn't have lived as long as they have, but they are still surviving and there are some who have been cancer free for a long while.

    I wish you the best in your up coming battles! Stay the vigilant course and see it through while keeping a good attitude, exercising, eating well and you'll be amazed at where it will tak you!

    -Joe
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #11
    Hi
    I'm so sorry about your diagnosis.

    *hugs*
    Gail
  • zirotra
    zirotra Member Posts: 30
    #12
    tootsie1 said:

    Hi
    I'm so sorry about your diagnosis.

    *hugs*
    Gail

    hi
    hi i am 29 and bordering between III and IV. its been a year of struggle. one thing i learnt is to stop worrying, be positive and live a life full of passion. nobody knows whats going to happen next but live life with passion and experience it. Good luck to you..
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    #13
    zirotra said:

    hi
    hi i am 29 and bordering between III and IV. its been a year of struggle. one thing i learnt is to stop worrying, be positive and live a life full of passion. nobody knows whats going to happen next but live life with passion and experience it. Good luck to you..

    Sorry to read of your
    Sorry to read of your diagnosis at such a young age.
    But at least being younger with it you have a much greater chance of beating it with less side effects ect.
    Newly diagnosed stage 4 myself (lung mets) and have'nt started any treatment for it yet. (waiting on 2nd opinion appt)so cant help you yet as far as treatment. I would also get a 2nd opinion also If I were you to. Good luck with it and keep us informed.
  • eringray
    eringray Member Posts: 19
    #14
    i know the feeling...
    i was diagnosed stage IV at 27. if you need someone your age to talk to im happy to help. i know when i was diagnosed it was so isolating for me because i felt so alone, none of my friends understood what i was going through. the first couple of months where the worst for me but before you know it life goes on and you will find strength you never knew you had. sending thoughts and prayers your way :)
  • djackson748
    djackson748 Member Posts: 8
    #15
    Stage 4 with mets in lung, liver and brain
    I am much older than you, but was diagnosed in late April, early May with the above. CEA level at that time was 2500! Have done gamma knife for the brain and Folfox with Oxaliplatin since and the last time it was checked the CEA level was 8. There IS hope and you should be as positive as you can be always. I'm very new to the board and pretty new to this journey, but I can assure you that the others here are right when they say to live your life to the fullest. I know that can be hard to do with chemo, side effects, etc., but you are NOT alone. There are lots of us out here who are living with this and more. Stay strong, positive and know that the statistics are only numbers. Early on I was scared...still am, but I refuse to believe that I'm going to be one of those numbers. I've had remarkable success so far and I know a big part of that is positive attitude and faith. There are also lots of organizations out there with people just like us who will offer support and information. Try to find one. Here, the most helpful is called Victory In The Valley. It was started by a woman who was told she had 2-3 months to live and she's still here some 9 years later! It CAN be done! This thing may get me sooner or later, but I'm sure not planning on it any time soon. You can do this. Just know that you can. You do have an advantage being young and strong. Hope this helps a little bit. If I can help you in any way, please post and I'll reply.
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #16
    We will be here if you need
    We will be here if you need us. Sorry about what you have to deal with.

    plh4gail
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #17
    So sorry to hear the news.
    So sorry to hear the news. 26 is so young. I thought I was young at 41. I never had lung mets but have liver mets on 3 different occasions. In fact I am recovering from my third liver surgery. You are not alone but I know how you feel. Even though I am a 6 veteran of the disease. I felt so alone in the weeks leading up to my most recent surgery and I have felt that way on other occasions even though I have great family and friends and there is so many support groups forums like this. I think that is just a symptom of the disease.

    Jeff

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