stage 4 with mets to liver

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  • eric38
    eric38 Member Posts: 583

    Hey Eric!
    Here's another Stage IV colon cancer survivor checking in. I say survivor because I'm still alive, kicking and causing all sorts of trouble in my world . I was diagnosed in Dec 2006 and at the time my surgeon found the tumour, which had perforated through the intestinal wall and an abscess formed around it, he said that the tumour was at least 10 years old. Hmmm... do does that mean I'm actually a 12 1/2 year old survivor since I've had cancer that long? Just food for thought :)

    Anywho... the tumour was surgically removed and I had a colon resection at the beginning of January 2007 (they had to wait 3 weeks while I was in the hospital and hooked up to IV antibiotics to try and clear up the serious acute peritonitis which was caused by the perforation and abscess).. then followed by 8 months of chemo and 6 weeks of radiation. In Dec 2007, my CEA was rising and a PET scan was ordered... the cancer had spread to my adrenal gland and my lungs. Grrrrr! That made me a Stage IV. What they don't know is WHEN did it spread? Was this before the chemo, during the chemo or after the chemo? No one knows, but the fact remains it had spread.

    Soooo, back to surgery in June 2008 to remove the right adrenal gland. OUCH! I swear that surgery was 10 times more painful than the colon resection surgery... but out it came.

    Now, we are in wait and see mode about the lungs. There were 12 "nodules" found in my lungs where one of them lit up and one looks very suspicious. Statistically speaking, all 12 are probably colon cancer mets, but only the one lit up the PET scan. In Jan of this year, I had that met blasted away with an RFA (Radio Frequency Ablation). That leaves me with 11 nodules that currently are not metabolically active (they may just be too small at this point). I go for my next CT scan of the lungs on July 20th to see if there is any activity or new growth. If they are still stable, then it will be another 4 months before the next scan.

    Currently, I am not on ANY cancer treatment. I have been 18 months (Wooooot!) since my last chemo treatment. Unfortunately, I am not NED (No Evidence of Disease) because of the lung nodules, but as of March 20th, I am NEAD (No Evidence of Active Disease) since none of the lung nodules were metabolically active.

    Oh, and yes when they found out the cancer had spread to the adrenal gland and the lungs, I was told the prognosis is not good. I said I wanted them to be more specific... what does "not good" mean? I was given the 2 months - 2 years maximum talk (and yes, I freaked out!). Well, it is now 15 months since the talk and, as you can see by my picture, other than the sunburnt cheeks, I am not quite ready to keel over any time soon ;)

    Stage IV is a label... it's not a life sentence :)

    Hugggggs,

    Cheryl

    I`ve been on here alot
    I`ve been on here alot lately and every time I post here within a few hours there are new helpful replies. That means alot to me and I`m sure others in my situation. Newbies who are just learning to deal with this need alot of encouragement. Who am I kidding? - we all need it. I`m very grateful and will be passing on my experiences to other people and hopefully along the way I`ll be able to help a few.
    Cheryl - it is obvious you are full of vim and vigor. As one of my good friends said to me "You will die eventually, but this is not what is going to kill you."
  • eric38
    eric38 Member Posts: 583
    Shayenne said:

    I always...
    ... ask my onc what I should be eating or taking supplement-wise, only because some supplememts may not let the chemo work the way it should, but my onc always tells me to eat anything, she is happy I keep my weight up, she told me she just doesn't want me wasting away, so I eat what I want, high in calories even, just to keep the weight on, but do eat lots of good salads as well.

    Shayenne - Thanks for your
    Shayenne - Thanks for your little nuggets of info.
  • lesvanb
    lesvanb Member Posts: 905
    eric38 said:

    I`ve been on here alot
    I`ve been on here alot lately and every time I post here within a few hours there are new helpful replies. That means alot to me and I`m sure others in my situation. Newbies who are just learning to deal with this need alot of encouragement. Who am I kidding? - we all need it. I`m very grateful and will be passing on my experiences to other people and hopefully along the way I`ll be able to help a few.
    Cheryl - it is obvious you are full of vim and vigor. As one of my good friends said to me "You will die eventually, but this is not what is going to kill you."

    another stage 4 with a met to the liver
    Welcome Eric. I remember how freaked out and seemingly alone I was at my diagnosis. Over time and making connections has definitely changed my outlook. I'm now NED after radiation/chemo, 2 surgeries (rectal and a liver surgery to remove the one met to the liver, and then adjuvant FOLFOX chemo. I've had great support form my naturopath, and acupuncturist as I went through treatments. Helped me sort through the vitamin/supplement questions. The following quote form James Baldwin has been helpsul for me through the process, "Not everything that is faced can be changed, but nothing can be changed until it is faced."

    all the best, Leslie
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    lesvanb said:

    another stage 4 with a met to the liver
    Welcome Eric. I remember how freaked out and seemingly alone I was at my diagnosis. Over time and making connections has definitely changed my outlook. I'm now NED after radiation/chemo, 2 surgeries (rectal and a liver surgery to remove the one met to the liver, and then adjuvant FOLFOX chemo. I've had great support form my naturopath, and acupuncturist as I went through treatments. Helped me sort through the vitamin/supplement questions. The following quote form James Baldwin has been helpsul for me through the process, "Not everything that is faced can be changed, but nothing can be changed until it is faced."

    all the best, Leslie

    acupuncture
    Hi Leslie,
    Did you do acupuncture during chemo? Did you do it for nausea? Pain? Acupuncture is quite accepted in Hawaii and my husband is thinking of some treatments.
    Thanks.
    Aloha,
    Kathleen
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    welcome
    Hi Eric and welcome,
    Everyone here has been tremendous support to my husband and me. We are new on this journey but willing to share what we know.
    Aloha,
    Kathleen
  • eric38
    eric38 Member Posts: 583

    acupuncture
    Hi Leslie,
    Did you do acupuncture during chemo? Did you do it for nausea? Pain? Acupuncture is quite accepted in Hawaii and my husband is thinking of some treatments.
    Thanks.
    Aloha,
    Kathleen

    I am seeing a chiropractor
    I am seeing a chiropractor who also does acupuncture. I just started yesterday so I will let you know how it goes but I keep seeing recommendations for acupuncture and chiropractic as a way to help cancer patients. I`ve just started on this journey so I`m still feeling my way around.
  • eric38
    eric38 Member Posts: 583
    lesvanb said:

    another stage 4 with a met to the liver
    Welcome Eric. I remember how freaked out and seemingly alone I was at my diagnosis. Over time and making connections has definitely changed my outlook. I'm now NED after radiation/chemo, 2 surgeries (rectal and a liver surgery to remove the one met to the liver, and then adjuvant FOLFOX chemo. I've had great support form my naturopath, and acupuncturist as I went through treatments. Helped me sort through the vitamin/supplement questions. The following quote form James Baldwin has been helpsul for me through the process, "Not everything that is faced can be changed, but nothing can be changed until it is faced."

    all the best, Leslie

    Thanks for sharing your
    Leslie - Thanks for sharing your story and for the inspirational quote
  • lesvanb
    lesvanb Member Posts: 905

    acupuncture
    Hi Leslie,
    Did you do acupuncture during chemo? Did you do it for nausea? Pain? Acupuncture is quite accepted in Hawaii and my husband is thinking of some treatments.
    Thanks.
    Aloha,
    Kathleen

    Acupuncture during chemo
    Yes I did acupuncture during chemo. I did not experience nausea other than some stomach queasiness towards the end (5FU, leukovorin, oxaliplatin). I went twice a week and honestly don't know how I could have made it without my acupuncturist. She also did more body work with the acupuncture as the chemo went on. My body craved the support. It also was fascinating to see my body patterns the week of infusion and the week after and throughout the 10 treatments. My naturopath does acupuncture. I also have an anthroposophical/internal medicine doc on my team too who also prescribes supplements and mistletoe subcutaneous injections. Mistletoe is uused a lot in Europe and is in a clinical trial here in the US. All the supplements etc I also checked out on Sloan Kettering website for herb interactions/cancer treatments too. Here's their link http://www.mskcc.org/mskcc/html/1979.cfm

    Leslie
  • mikew42
    mikew42 Member Posts: 114 Member
    Another Stage 4 Here
    Sorry for the late post, but thought you might like another positive story. I was 41 when diagnosed with Stage 4, 3 mets to the liver. Did 6 months of chemo, then RFA on the 3 mets. My last treatment was October 2004 and have been NED since. This sight was a tremendous help in pulling me through my darker days. Take care and keep us posted. Mike
  • eric38
    eric38 Member Posts: 583
    mikew42 said:

    Another Stage 4 Here
    Sorry for the late post, but thought you might like another positive story. I was 41 when diagnosed with Stage 4, 3 mets to the liver. Did 6 months of chemo, then RFA on the 3 mets. My last treatment was October 2004 and have been NED since. This sight was a tremendous help in pulling me through my darker days. Take care and keep us posted. Mike

    Mike - Thank you for taking
    Mike - Thank you for taking the time to post your story. It is very inspirational since your situation was so similar to mine.
  • Shayenne
    Shayenne Member Posts: 2,342
    eric38 said:

    Mike - Thank you for taking
    Mike - Thank you for taking the time to post your story. It is very inspirational since your situation was so similar to mine.

    Thanks !
    Mike, I love hearing stories like yours as well, it keeps me up and this board has been such an inspiratioin, I can be weepy one time out of the day, and then come right here to get comforted by reading posts like yours, thanks for sharing you story! It really enlightens people.

    Hugsssss!
    ~Donna
  • menright
    menright Member Posts: 256 Member
    Mets to liver
    Eric:

    I too have CC with 3 mets to the liver. I have undergone 3mos chemo...rectal surgery (AP resection) and now have another 3-6mos of chemo....this will be followed by liver surgery. Did you know they can remove up to 85% of your liver and it will grow back. There is hope out there for you and I.

    Best of Luck.

    Mike
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    When first diagnosed
    Eric,

    When first diagnosed I had 5 liver mets that were bilobar (3 on left, 1 on right and 1 kind of in the middle). I was told by an oncologist I was not operable. I went for a second opinion at Sloan Kettering who told me that I was close to resection but we would do chemo first. After 4 rounds of chemo the mets shrunk by 40%. I had one more treatment (#5) before my liver resection (which was 4 months after my diagnosis and the "unresectable comment). I had my surgery on 2/20 and the pathology indicated that the FOLFOX had done a number on the mets with the largest shrunk by 80% and 90% necrotic. On 6/18 I go for my next CT scan and hoping/praying for NED again. So be positive!! My doctor told me there is more than a 40% chance for cure and 60% chance for disease-free survival at 60%.

    Come here for any questions!!

    Amy
  • Nana b
    Nana b Member Posts: 3,030 Member
    menright said:

    Mets to liver
    Eric:

    I too have CC with 3 mets to the liver. I have undergone 3mos chemo...rectal surgery (AP resection) and now have another 3-6mos of chemo....this will be followed by liver surgery. Did you know they can remove up to 85% of your liver and it will grow back. There is hope out there for you and I.

    Best of Luck.

    Mike

    Mets to liver
    Nov 08, tumor in the acsending colon, stage III, had surgery, 7 out of 15 lymp nodes affected, 2 liver mets then during surgery they found another. I had 60% of my liver resected on 4/18/09. They could have taken more but that could have been a death sentence in inself. With 60%, I was alredy turning jaundice and my surgeon, Doctor Osorio said he would not have taken anymore, because of this they are not sure if they got a clean margin. I was turning a jaudince color, but I am praying that they did get a clean margin. My last pet showed a lit spot in my liver but that coud be the after affects of the surgery. I hope so, if not... come on chemo!

    I am back to finishing my chemo next week, treatment 7 out of 12. I think I will walk in for chemo, struting my new wig. Yeah, baby! lol

    Hang in there, get the frustrations out and try and live life to the fullest. I was telling my sister just the other day, "I am so bored, but I have no energy to do anything, not even simple things." I think I also get frustrated and have to get myself up and moving, even if it's to do a small walk or water the plants.

    Take Care!
  • JR
    JR Member Posts: 139 Member
    Here's another one....
    Hello Eric,
    Sorry that you had to join us here but I think you will find alot of support. Most of us have experienced what your going through. I'm a 56 year old male who was dx in November of last year. Colon cancer with liver fully involved and mets to both lungs. I know how hard it is dealing with all the emotions when you get the terrible news. But, you will get through it. You have alot of things going for you. Your young and strong and that will help alot in dealing with chemo. You will find many similar stories here. Were all here for you. There is a wealth of knowledge and experience here that you should find very helpful. I know I did.

    John
  • eric38
    eric38 Member Posts: 583
    JR said:

    Here's another one....
    Hello Eric,
    Sorry that you had to join us here but I think you will find alot of support. Most of us have experienced what your going through. I'm a 56 year old male who was dx in November of last year. Colon cancer with liver fully involved and mets to both lungs. I know how hard it is dealing with all the emotions when you get the terrible news. But, you will get through it. You have alot of things going for you. Your young and strong and that will help alot in dealing with chemo. You will find many similar stories here. Were all here for you. There is a wealth of knowledge and experience here that you should find very helpful. I know I did.

    John

    I come here a couple of
    I come here a couple of times a day and am very grateful for all the encouraging posts. Thank you. I am learning to live with cancer and not let it define me.
    Mike - it is nice to meet someone in my same boat with such a positive attitude. You are right - there is hope for us.
  • amcp
    amcp Member Posts: 251 Member
    eric38 said:

    I come here a couple of
    I come here a couple of times a day and am very grateful for all the encouraging posts. Thank you. I am learning to live with cancer and not let it define me.
    Mike - it is nice to meet someone in my same boat with such a positive attitude. You are right - there is hope for us.

    Thanks
    Eric you are the same age as our oldest Son. I am so thankul for you for mentioning my husbands success story. I hope that by telling others of his fight against the monster that we can give others hope and knowledge of the vast difference in second opinions. Stage 4 is not a death sentence...cancer can be beaten and if not totally beaten it can be beat back so that you can have a long and happy life. I hope and pray that you are getting the best of care and that you stay positive. Am here to help in anyway I can. Keep fighting...look forward to seeing your success story soon.
    In thought and prayer
    Anna
  • maglets
    maglets Member Posts: 2,576 Member
    amcp said:

    Thanks
    Eric you are the same age as our oldest Son. I am so thankul for you for mentioning my husbands success story. I hope that by telling others of his fight against the monster that we can give others hope and knowledge of the vast difference in second opinions. Stage 4 is not a death sentence...cancer can be beaten and if not totally beaten it can be beat back so that you can have a long and happy life. I hope and pray that you are getting the best of care and that you stay positive. Am here to help in anyway I can. Keep fighting...look forward to seeing your success story soon.
    In thought and prayer
    Anna

    late
    Sorry Eric to be so late checking in with you. I have had the low downchemo blues this week so I have been sorta out of touch. Eric I was diagnosed with colon c in Jan 05 and by spring 06 I had 7 liver mets both lobes and told to get the old affairs in order. As far as I know it is now spring 09 and I am going strong.
    I am from Canada and I have noticed that my liver surgeon did no chemo before-hand...just radical surgery and kid you not....it's a bit tough. Then I had chemo and last Sept another spot on the liver and another re-section and now chemo.

    so it's 5 years for me Eric....can't say i have been disease free but I am here and rockin on

    you will too. Let me please offer you any help I can

    mags
  • eric38
    eric38 Member Posts: 583
    maglets said:

    late
    Sorry Eric to be so late checking in with you. I have had the low downchemo blues this week so I have been sorta out of touch. Eric I was diagnosed with colon c in Jan 05 and by spring 06 I had 7 liver mets both lobes and told to get the old affairs in order. As far as I know it is now spring 09 and I am going strong.
    I am from Canada and I have noticed that my liver surgeon did no chemo before-hand...just radical surgery and kid you not....it's a bit tough. Then I had chemo and last Sept another spot on the liver and another re-section and now chemo.

    so it's 5 years for me Eric....can't say i have been disease free but I am here and rockin on

    you will too. Let me please offer you any help I can

    mags

    Thanks to all
    Amcp - there`s a reason I mention your husbands story to people. It is amazing and inspiring. Thank you for the offer of help. It is much appreciated.
    Maglets - I understand about the lowdown chemo blues but thank you for sharing your story. When this first began I felt sorry for myself and now thanks to the people on this site you realize no matter how bad you have it there are those who have it worse and have still overcome.
  • Fb489
    Fb489 Member Posts: 69
    eric38 said:

    Thanks to all
    Amcp - there`s a reason I mention your husbands story to people. It is amazing and inspiring. Thank you for the offer of help. It is much appreciated.
    Maglets - I understand about the lowdown chemo blues but thank you for sharing your story. When this first began I felt sorry for myself and now thanks to the people on this site you realize no matter how bad you have it there are those who have it worse and have still overcome.

    RIP
    Rest in peace dear one