My husband is 34 with stage IV

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Pina2010
Pina2010 Member Posts: 6
edited March 2016 in Colorectal Cancer #1

Good morning,  

I truly need to here positive information as the web is negative. My husband and I have three kids 14, 8 and 4 and he was diagnosed stage IV December 2015. They were not able to remove the mass from his colon because they wanted him on chemo immediately due to the masses in his liver. He currently has a colonic stent to move the colon tumor so that he is able to go to the restroom. He is on his 5 treatment and the ct scan shows the liver masses are shrinking. The best news at this point with both of the ct scans that he has had is that the cancer is isolated to the colon and liver. He did not have any typical symptoms. When they found the cancer they had completed a ct scan because they thought he had appendisitis. So again i would love to hear stories from people that are beating this. 

Thank you

«1

Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Welcome to the forum

    I'm so very sorry that your husband has been diagnosed, and at such a young age. 

    You really do have to be careful where you look for information, as it can get very discouraging. You have come to the right place, though, as you will find many Stage III & IV patients who are doing very well. Some of us are doing well and not need ing any more treatment, like myself, and others are doing well with continued treatment. 

    Cancer used to be a death sentence, but no more. I think it is wise to keep in mind what could happen, but live as though it is not going to happen. Staying positive is hard, especially at first, but it is absouluitely necessary if you want to make it out and past treatment. I used to allow myself 10 minutes of pity time, and then chin up and nothing but good vibes. I'm almost two years out from my last episode, which was a liver ablation, so you see, it can be done. 

    There are many here, who pop in now over time, and they wil be along to help you and share with you their positive stories. 

    Sue - Trubrit

  • impactzone
    impactzone Member Posts: 551 Member
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    I'm sorry. Stage 4 here for

    I'm sorry. Stage 4 here for the last almost 10 years. You can check my profile but I started with liver involvement as well. I did get surgery for that early after colon surgery and it has never returned to the liver. I did have it in the lungs but 4 surgeries and chemo have had the last three years NED. All my best. Find a good liver surgeon if you can at a major hospital!

    Chip

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
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    I had it in my colon and then

    I had it in my colon and then twice in my liver. I'm clear [ned] for a year and a half now, 8 1/2 years after diagnosis. Other than blood tests and a scan at regular intervals, I'm living a normal existence, so keep your hopes up. My appendix was acting up at the first surgery, so they took it too. It's interesting that it swells up at the same time the CRC is happening, but doesn't have any mets to it. Anyway, hang tough and let us know how the treatment goes.................................Dave

  • Pina2010
    Pina2010 Member Posts: 6
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    Trubrit said:

    Welcome to the forum

    I'm so very sorry that your husband has been diagnosed, and at such a young age. 

    You really do have to be careful where you look for information, as it can get very discouraging. You have come to the right place, though, as you will find many Stage III & IV patients who are doing very well. Some of us are doing well and not need ing any more treatment, like myself, and others are doing well with continued treatment. 

    Cancer used to be a death sentence, but no more. I think it is wise to keep in mind what could happen, but live as though it is not going to happen. Staying positive is hard, especially at first, but it is absouluitely necessary if you want to make it out and past treatment. I used to allow myself 10 minutes of pity time, and then chin up and nothing but good vibes. I'm almost two years out from my last episode, which was a liver ablation, so you see, it can be done. 

    There are many here, who pop in now over time, and they wil be along to help you and share with you their positive stories. 

    Sue - Trubrit

    Thank you!  As a caregiver I

    Thank you!  As a caregiver I want to stay as informed and positive as I can. 

  • Pina2010
    Pina2010 Member Posts: 6
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    I'm sorry. Stage 4 here for

    I'm sorry. Stage 4 here for the last almost 10 years. You can check my profile but I started with liver involvement as well. I did get surgery for that early after colon surgery and it has never returned to the liver. I did have it in the lungs but 4 surgeries and chemo have had the last three years NED. All my best. Find a good liver surgeon if you can at a major hospital!

    Chip

    I will certainly do that.

    I will certainly do that. Thank you

  • Pina2010
    Pina2010 Member Posts: 6
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    I had it in my colon and then

    I had it in my colon and then twice in my liver. I'm clear [ned] for a year and a half now, 8 1/2 years after diagnosis. Other than blood tests and a scan at regular intervals, I'm living a normal existence, so keep your hopes up. My appendix was acting up at the first surgery, so they took it too. It's interesting that it swells up at the same time the CRC is happening, but doesn't have any mets to it. Anyway, hang tough and let us know how the treatment goes.................................Dave

    Thank you Dave I will. And

    Thank you Dave I will. And thank you for your survivor story. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    Pina2010 said:

    Thank you Dave I will. And

    Thank you Dave I will. And thank you for your survivor story. 

    I was diagnosed just over two

    I was diagnosed just over two years ago with stage three. Today I feel almost totally normal and live my life close to what it was before. The fact that I'm not completely back to normal has more to do with some other health issue rather than the cancer itself. There are lots of options these days and there are a number of people on this forum who have been living a long tme after a stage four diagnosis. I recently found out I have mets in one lung and just finished radiation for that last week. I feel like that makes me a stage four and I would have been if they'd shown up initially but I'm still considered a stage three. Semantics. The point is that I had mets and have had them radiated and I'll know in May if it worked. It does 95% of the time so I think my odds are good. I expect to be here for a long time.

    I'm sorry for your husband's diagnosis. It's such a scary word and it's a terrifying diagnosis. Please make sure to come on here with any questions. The people on here are very savvy and up to date with information. The stuff you can look up on the internet can be out of date or even just misinformation. Best of luck and keep strong for him and let him know that cancer is no longer an automatic death sentence.

    Jan 

  • Pina2010
    Pina2010 Member Posts: 6
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    JanJan63 said:

    I was diagnosed just over two

    I was diagnosed just over two years ago with stage three. Today I feel almost totally normal and live my life close to what it was before. The fact that I'm not completely back to normal has more to do with some other health issue rather than the cancer itself. There are lots of options these days and there are a number of people on this forum who have been living a long tme after a stage four diagnosis. I recently found out I have mets in one lung and just finished radiation for that last week. I feel like that makes me a stage four and I would have been if they'd shown up initially but I'm still considered a stage three. Semantics. The point is that I had mets and have had them radiated and I'll know in May if it worked. It does 95% of the time so I think my odds are good. I expect to be here for a long time.

    I'm sorry for your husband's diagnosis. It's such a scary word and it's a terrifying diagnosis. Please make sure to come on here with any questions. The people on here are very savvy and up to date with information. The stuff you can look up on the internet can be out of date or even just misinformation. Best of luck and keep strong for him and let him know that cancer is no longer an automatic death sentence.

    Jan 

    Thank you Jan

    Thank you Jan

  • mykidsmommy
    mykidsmommy Member Posts: 76
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    You can do this

    I am a survivor - 8 years and now a little hiccup - but I wil get through and survive again! Stay off the internet - it is a scary place -  and your husband will do fine with your enocouragment. I have kids 16 and 11 and I know that is hard too - but if they see Mom and Dad fight cancer together and face it head on - they will be better for it. I think we want to protect our kids from all of the scary stuff in life and then along comes cancer - and you have to fight it - head on. Find the best docs in your town - search high and low. 

    There can be many days in your life, even in your week that can be normal and filled with lits of good things. Keep your eyes on the prize - getting better - being healed and getting back to your life.  There is so much progress with cancer treatment it's 2016!!! 

     

  • carrieh
    carrieh Member Posts: 146 Member
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    I was young too

    Hi

    i was diagnosed at 32...I'm 36 now and technically a stage lV with lung mets. I've been cancer free for 21 months, and have my life back. Sure some things have changed, but it's mainly in a good way. It is a long perilous journey, but it is possible to make it; no matter what stage. Wishing you peace and health..

    Carrie and family

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
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    carrieh said:

    I was young too

    Hi

    i was diagnosed at 32...I'm 36 now and technically a stage lV with lung mets. I've been cancer free for 21 months, and have my life back. Sure some things have changed, but it's mainly in a good way. It is a long perilous journey, but it is possible to make it; no matter what stage. Wishing you peace and health..

    Carrie and family

    Rambling

    Rambling

  • Mart9012
    Mart9012 Member Posts: 2
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    Hi

    HI, just to say I'm in the same boat almost but at the very beginning of this nightmare.

    I wiah you well and your hubby the best results possible.

  • gfpiv
    gfpiv Member Posts: 59 Member
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    Consider HAI?

    Hi, sorry to hear about your news.  Just thought I'd chime in since I see the typical folks haven't yet mentioned HAI on this thread.  I was dxed stage IV with 2 lymph nodes and over half my liver cancerous 6 yrs ago now, and am now currently NED (it amazes me that I can even type that).  Despite what you may commonly hear (and what I did hear many times in 2010) - stage IV is not necessarily a death sentence.  With only liver metastases, your husband may be a very good candidate for HAI / hepatic pump.  In a nutshell...it saved my life.  It is concentrated chemo directed at the liver, which can have dramatic results under the right circumstances.  Memorial Sloan Kettering in NYC is the gold standard for this treatment, though there are other hospitals that do it as well.  I would highly recommend you look into this more (either by searching here or on the web, or PMing me).  And PLEASE do not be discouraged if a hospital/onc that does not do HAI downplays its potential effectiveness to you...there are many more here on this board just like me - and potentially your husband - who have had life changing results with it.

    All my best to you and your family,

    Chip

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    My heart sank when I saw your

    My heart sank when I saw your husband's age.  I am 46, diagnosed at 42. I thought that was young.  I have nothing to add to the post except one foot in front of the other.  People are beating this so keep pushing forward!!!

  • BillO60
    BillO60 Member Posts: 72
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    Hi Pina

    I'm Stage III, diagnosed about 13 months ago. Been through radiation/chemo, surgery, now chemo, and then will have another minor surgery to make a final repair.

    When I was diagnosed I started researching websites, both legitimate and some that are way, far out, on the fringe.  Much of the negative information I found was based on someone trying to sell some fringe treatment and so they downplay standard treatements. On what I would consider legitimate sites (PubMed, various hospital sites) there is quite a lot of outdated information. Some of the statisitcs cited are based on older treatments and therapies. Since it takes years to gather data (survival stats are based on 5 year survival rates so they have to at least wait 5 years to see who survives). Basically it will take some time before new statisics are published that will be based on newer treatments.

    Generally, unless you can verify the date of any study, treat most of what you read on the web as outdated information.  Just ignore any site that's trying to sell something. Those tend to provide useless or intentionally misleading information. 

    There are no hard numbers to go with this, so take it as ancedotal information only - I go in for chemo IV infusion and have talked to various nurses (6 to be exact) about treatments, trends, survival, and recurrence, based on their experience. It's subjective and like most healthcare professionals in general, they won't give any absolute answers when it comes to treatment efficacy.  However, the nurses I spoke to are seeing higher numbers of Stage III and IV patients survive in the past 5 years that they believe would not have survived 10 - 15 years ago. That's both with mets and without mets.

    Stay positive (easier said than done I know) and take care of yourself.  As a caregiver you're going to need to stay physically and emotionally healthy. While you can't avoid stress you'll need to try to manage it as much as possible in order to juggle schedules, 3 kids, and the emotional pressure from having to deal with your husbands illness.

    Bill

  • Happy Mom
    Happy Mom Member Posts: 2
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    my husband is young too

    I read your post and thought, wow, I guess there are many in this situation! My husband was just diagnosed a few weeks ago, but today we got a plan going. He is stage 4 because he does have some small round nodes in his lungs. We saw the surgeon first today who said-ok, well there are mets and there are mets-this is minor, but we can hit you with the agressive chemo for a bit, shrink it all, then take out the tumor-which is like 3 cm??? So, he said to us that he sees this every day but that he sees a ton of cures now with young people especially becasue they are generally very healthy. Then we went to see the oncologist and she kept saying "well, we wont know if we can go for the cure because it's harder and you know it might be better to just treat it chronically..." well, that isnt going to happen, we are going to get him to a cure-his odds were given to be about 33% for a cure-but if not a cure at least 5 years of treatment...first agressive chemo, then a maintanance dose of chemo. I know it's crappy, but from what the oncologist told us the chemo for rectal/colon is really not bad...and most patients lead normal lives and work full time. My husbands tumor is adenocarcinoma which i guess is very common for rectal, so therefore they have lots of meds to choose from. His CEA was 9, and the surgeon said that is fine, but the oncologist said they like it to be about 5. Well, geez, I wish he didnt have cancer at all, but I will take 5+ years and a possible cure!

  • John23
    John23 Member Posts: 2,122 Member
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    BillO60 said:

    Hi Pina

    I'm Stage III, diagnosed about 13 months ago. Been through radiation/chemo, surgery, now chemo, and then will have another minor surgery to make a final repair.

    When I was diagnosed I started researching websites, both legitimate and some that are way, far out, on the fringe.  Much of the negative information I found was based on someone trying to sell some fringe treatment and so they downplay standard treatements. On what I would consider legitimate sites (PubMed, various hospital sites) there is quite a lot of outdated information. Some of the statisitcs cited are based on older treatments and therapies. Since it takes years to gather data (survival stats are based on 5 year survival rates so they have to at least wait 5 years to see who survives). Basically it will take some time before new statisics are published that will be based on newer treatments.

    Generally, unless you can verify the date of any study, treat most of what you read on the web as outdated information.  Just ignore any site that's trying to sell something. Those tend to provide useless or intentionally misleading information. 

    There are no hard numbers to go with this, so take it as ancedotal information only - I go in for chemo IV infusion and have talked to various nurses (6 to be exact) about treatments, trends, survival, and recurrence, based on their experience. It's subjective and like most healthcare professionals in general, they won't give any absolute answers when it comes to treatment efficacy.  However, the nurses I spoke to are seeing higher numbers of Stage III and IV patients survive in the past 5 years that they believe would not have survived 10 - 15 years ago. That's both with mets and without mets.

    Stay positive (easier said than done I know) and take care of yourself.  As a caregiver you're going to need to stay physically and emotionally healthy. While you can't avoid stress you'll need to try to manage it as much as possible in order to juggle schedules, 3 kids, and the emotional pressure from having to deal with your husbands illness.

    Bill

    Statistics revisited

    Statistics revisited

    It's worth noting, a Scandinavian report several years back that took great pains to learn that people with cancer aren't "living longer", they are simply being diagnosed earlier.

    That study was agreed upon and noted in numerous medical Journals, both for general physicians and those in Oncology.

    Years ago there wasn't the technology we presently have to properly locate and diagnose a cancer cell cluster. There still isn't any technology to locate a single cancer cell easily. And even with the technology to locate the cell cluster, there is presently no way to isolate the target with any serious accuracy. We can't poison the cancer cell without poisoning surrounding cells.

    Much ado about nuttin'.

    It takes not 5 years, but 10 years to accumulate enough data to provide any statistic of quality. The "new statistics" aren't "statistics" at all. They are what are called in the stock trade: "Forward looking statements". You can't get funding and investors without some seriously hyped up dialog regarding your product. It is also worth noting, that when they suggest a "greater life expectancy", they are measuring the time in days and months, not years.

    A "new" drug or procedure may provide "up to" .72 days, or 1.3 months of life extended. Wow! Huh? Remember the words "up to", it's the marketplace caveat for anything less than stated is perfectly legal-speak.

    After some heavy research, you can find (as I have, and have posted here previously), that the large percentage of "new chemo" drugs are only re-licensed drugs that have been used for over 20 years. Some "tweaking" of the individual ingredients perhaps, but the same drug none-the-less. The leading Oncologist Journals have noted that information as well. Many Oncologist organizations have raised complaints regarding the lack of serious interest in producing better chemicals.

    And yes, there are some new Immune enhancing medications that are not considered "chemo". But read very closely to the extended life that might be provided from their use.

    It's easy to become complacent when you're suffering from cancer and seeking the best remedy; it's easy to believe the hype. But it's that complacency that keeps the drug manufacturers in business selling the same old garbage that they've already made billions with. It may work for some, doing nothing may work for others, and doing alternatives can do the trick also.

    Cancer is an insidious disease. It's just a normal cell that's been damaged, not hearing instructions from the body, and growing like an amoeba. It uses the fermentation process, eating glucose and ejecting lactose. The liver converts lactose into glucose.... The body produces dead cells every second you're alive.
    If your immune system does not remove that cell, it can turn to the fermentation process to stay alive - Ala' Cancer

    Fix the immune system to do what it should (like 90% of everyone else's system), and you've cured cancer. Try to avoid anything and everything that is said to "cause cancer" and you're only staving off the inevitable.

    The problem is within.

    The statistics have not changed.

    The information is always available to those with the courage to face it.

    All that aside....?

    You have my very best wishes for a long life without cancer!

    John

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    Options
    John23 said:

    Statistics revisited

    Statistics revisited

    It's worth noting, a Scandinavian report several years back that took great pains to learn that people with cancer aren't "living longer", they are simply being diagnosed earlier.

    That study was agreed upon and noted in numerous medical Journals, both for general physicians and those in Oncology.

    Years ago there wasn't the technology we presently have to properly locate and diagnose a cancer cell cluster. There still isn't any technology to locate a single cancer cell easily. And even with the technology to locate the cell cluster, there is presently no way to isolate the target with any serious accuracy. We can't poison the cancer cell without poisoning surrounding cells.

    Much ado about nuttin'.

    It takes not 5 years, but 10 years to accumulate enough data to provide any statistic of quality. The "new statistics" aren't "statistics" at all. They are what are called in the stock trade: "Forward looking statements". You can't get funding and investors without some seriously hyped up dialog regarding your product. It is also worth noting, that when they suggest a "greater life expectancy", they are measuring the time in days and months, not years.

    A "new" drug or procedure may provide "up to" .72 days, or 1.3 months of life extended. Wow! Huh? Remember the words "up to", it's the marketplace caveat for anything less than stated is perfectly legal-speak.

    After some heavy research, you can find (as I have, and have posted here previously), that the large percentage of "new chemo" drugs are only re-licensed drugs that have been used for over 20 years. Some "tweaking" of the individual ingredients perhaps, but the same drug none-the-less. The leading Oncologist Journals have noted that information as well. Many Oncologist organizations have raised complaints regarding the lack of serious interest in producing better chemicals.

    And yes, there are some new Immune enhancing medications that are not considered "chemo". But read very closely to the extended life that might be provided from their use.

    It's easy to become complacent when you're suffering from cancer and seeking the best remedy; it's easy to believe the hype. But it's that complacency that keeps the drug manufacturers in business selling the same old garbage that they've already made billions with. It may work for some, doing nothing may work for others, and doing alternatives can do the trick also.

    Cancer is an insidious disease. It's just a normal cell that's been damaged, not hearing instructions from the body, and growing like an amoeba. It uses the fermentation process, eating glucose and ejecting lactose. The liver converts lactose into glucose.... The body produces dead cells every second you're alive.
    If your immune system does not remove that cell, it can turn to the fermentation process to stay alive - Ala' Cancer

    Fix the immune system to do what it should (like 90% of everyone else's system), and you've cured cancer. Try to avoid anything and everything that is said to "cause cancer" and you're only staving off the inevitable.

    The problem is within.

    The statistics have not changed.

    The information is always available to those with the courage to face it.

    All that aside....?

    You have my very best wishes for a long life without cancer!

    John

    John, I just had a thought

    John, I just had a thought and I wonder what your opinion is or if you have any information on this. Would a person who has had an organ replaced and is on immunosuppressing drugs be more likely to develop cancer due to their body's inability to fight it off? I haven't, but when I read your post the thought came to me.

    Jan

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
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    JanJan63 said:

    John, I just had a thought

    John, I just had a thought and I wonder what your opinion is or if you have any information on this. Would a person who has had an organ replaced and is on immunosuppressing drugs be more likely to develop cancer due to their body's inability to fight it off? I haven't, but when I read your post the thought came to me.

    Jan

    Hi Jan
    Yes,  that can

    Hi Jan

    Yes,  that can certainly happen, and in fact happened to Rick's father.   The doctors didn't mention it until after he had died, but the drugs that they put him on to keep his new kidney functioning actually started killing him the minute he started taking them.  The doctor told his wife that the drugs typically will eventually cause a stroke, a heart attack, or cancer.  He was on the immunosuppressant drugs for two years before passing away from a brain tumor - two weeks before Rick passed. 

  • John23
    John23 Member Posts: 2,122 Member
    Options
    JanJan63 said:

    John, I just had a thought

    John, I just had a thought and I wonder what your opinion is or if you have any information on this. Would a person who has had an organ replaced and is on immunosuppressing drugs be more likely to develop cancer due to their body's inability to fight it off? I haven't, but when I read your post the thought came to me.

    Jan

    Immune system.....

    Immune system.....

    You're question was answered, I see! (and well !!)

    Chemo lowers one's resistance (I.E.: Immune system). An Oncologist takes a patient off chemo when he sees that happening. Second cancers occur more often if the immune system is weakened. Especially so during or after treatment, since chemo and radiation damages good cells.

    But the real problem is (for us here with cancer), that our immune system does not (or did not) remove the damaged/dying cell when it should have. Leaving that defective cell behind can allow it to continue to live by the fermentation process.

    So the problem can be due to a weakened immune system, perhaps causing it to ignore what it should be removing, or a defective immune system that isn't doing what it should.

    Either way, that's what a cancer cell is, and how it comes to be.

    Due to the natural growing and healing process, we can't avoid having defective, damaged cells; to kill anything, it has to be damaged bad enough to cause it to die. Our body does that automatically and naturally, What isn't "natural", is the immune system ignoring the bad cell.

    It's not understood why the immune system neglects to do it's job for some of us. It could be DNA, genetic makeup, some sort of deficiency... who knows? But if the immune system's problem isn't resolved, cancer will have a chance to form and exist.

    It's good to eat well and give the body it's best chance for survival, but avoiding things in an effort to prevent, can be futile.

    That never ending list of carcinogenic items in California is always good for a laugh. If it didn't hurt me to laugh...

    Be well.

    John