The Subject of Recurrence in Our Community

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Comments

  • lesvanb
    lesvanb Member Posts: 905
    Sundanceh said:

    Hey Leslie
    You know what I was just thinking of?

    I was thinking how we had just taken a seat on the park bench right outside of the Navy Pier....and we were just getting comfortable after that long walk....we were just about to get into a nice conversation......and then we had to catch up to the group...

    I wish you and I had more time to have those impromptu chats - I really enjoyed talking with you during the time that we did have though:)

    You're a great friend to me - you see things in me that I can't see - and have such a belief in me that I want to believe in - and sometimes I can, but sometimes I need help:)

    Thank you for all of that and more.

    We'll always have Chicago, eh?

    -Craig

    (((Craig)))
    Yes, we will always have Chicago my brave lion (borrowed that phrase from someone I admire :)

    Ride on
    Leslie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Love to read what you write
    As always, you touch my heart. I'm praying for 25 years and more for you, my friend. I like having you around.

    I'm thinking hard about my lack of discipline as far as exercise goes. I believe firmly that it is one of the keys to prevention and to prevention of recurrence. I need to get serious!

    *hugs*
    Gail
  • Livingbyfaith
    Livingbyfaith Member Posts: 55
    I have been trying to figure out what the heck is going on. My husband had surgery, stage III in 07, reoccurence large liver tumor 2011, started chemo, tumor shrinking. Last ct large tumor shrinking but now two small ones in liver slight growth and in lungs slight growth. These seem to be growing in spite of chemo. Now changing to Oxi, xeloda and vecibix. He looks great, does supplements with oncologist approval, works, exercises. His mother had breast cancer, one nurse said just in genes. What now. He was on Avemar for 4 years before reoccurence, started back on it. Nothing said of Sir Spheres yet, trying to do first line treatment I guess first which is chemo. He has been eating a lot of sweets to maintain weight, now trying to cut those out. We need wisdom from God, oncologists are so busy its almost like assembly line treatment. Any advice would be appreciated.
  • tommycat
    tommycat Member Posts: 790 Member
    lesvanb said:

    Ride on!
    Thanks for writing this Craig. Recurrence and remission is a fact that hangs out in my neighborhood too.

    I agree with: "I’m currently walking along the the trail towards “The Path of Acceptance” - and about a good many things too."

    Here's a favorite reading of mine while navigating the stormy cancer waters:

    Michael Lerner
    Choices in Healing:
    Integrating the Best of Conventional and Complementary Approaches to Cancer
    1994 MIT Press

    “I would pay a great deal of attention to the inner healing process that I hoped a cancer diagnosis would trigger in me. I would give careful thought to the meaning of my life, what I had let go of and what I wanted to keep.

    “I would give careful thought to choosing a mainstream oncologist. I wouldn’t need someone with wonderful empathetic skills because I have other people to provide that. But I would want a doctor who is basically kind, is on top of the medical literature regarding my disease, takes the time to be deeply involved in treatment decisions, supports my use of complementary therapies, and sticks with me medically and emotionally if I were facing death.

    “I would use conventional therapies that offered a real chance for recovery, but I would probably not use experimental therapies or therapies with a low probability of success that were highly toxic or compromised my capacity to live and dies as I choose.

    “I would use complementary therapies. I would look for a good support group and a psychotherapist experienced in working with people with cancer. I’ve been a vegetarian for many years but I would look for ways to enhance my nutrition. I would meditate and practice yoga more often, and spend more time in nature, taking walks in the woods, by the ocean, and in the mountains.

    “I would definitely use traditional Chinese medicine, both herbs and acupuncture.
    I would strive for life and recovery with every possible tool and resource I could find. But I would also work to face death in a way that deepened my growth and led to some resolution.

    “I would spend time with people I value, and with books, writing, music, and God. I would do everything I could do that I didn’t want to leave undone. I would not waste time with old obligations, though I would try to extricate myself from them decently.

    “I would try to live my own life in my own way. I would try to accept the pain and sorrow inherent in my situation, but I would searchingly for beauty, wisdom, and the joy.”


    all the best, Leslie

    That is beautiful
    That is beautiful Leslie---wow. Am saving it.
    thanks!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    I have been trying to figure out what the heck is going on. My husband had surgery, stage III in 07, reoccurence large liver tumor 2011, started chemo, tumor shrinking. Last ct large tumor shrinking but now two small ones in liver slight growth and in lungs slight growth. These seem to be growing in spite of chemo. Now changing to Oxi, xeloda and vecibix. He looks great, does supplements with oncologist approval, works, exercises. His mother had breast cancer, one nurse said just in genes. What now. He was on Avemar for 4 years before reoccurence, started back on it. Nothing said of Sir Spheres yet, trying to do first line treatment I guess first which is chemo. He has been eating a lot of sweets to maintain weight, now trying to cut those out. We need wisdom from God, oncologists are so busy its almost like assembly line treatment. Any advice would be appreciated.

    Living.....
    The only advice I have for myself or for anyone...is to just keep trying.

    Once the cancer goes systemic, it's like swinging the barn door open and letting the horses and cattle scatter....that's why recurrence is so tough....the body is a huge maze and it becomes much harder to eradicate a moving target.

    Despite various approaches, we still see recurrence over and over....I'm of the thought now (after 3 myself) that once we recur....we're more prone to recur....and we recur in a much shorter time frame.

    If we took 100 of us...and all of us got the EXACT same drugs....and ate the EXACT same things....and did the EXACT same exercise program....etc.etc.....there will be those that do good, while others did not.....some of us would make it....while others of us would not.

    And of course, there is that very old and tired line that we throw around up everyday..."We all react differently."

    And, of course, there is a lot of truth in that....and that's why there is no panacea to cancer...and why there will never be a complete absolute answer that "If we do this - then we achieve that".....and then 'that will be that.'

    I've tried several different ways...and got clear all times....but recurred each time...and waiting to see how this last time goes...I don't think for me that it's IF anymore, but rather WHEN.

    I've had it off and on for so long now. Just keep trying and fighting as long as you can...I think that's all that any of us can really do.

    -c
  • lizzydavis
    lizzydavis Member Posts: 893
    Sundanceh said:

    Living.....
    The only advice I have for myself or for anyone...is to just keep trying.

    Once the cancer goes systemic, it's like swinging the barn door open and letting the horses and cattle scatter....that's why recurrence is so tough....the body is a huge maze and it becomes much harder to eradicate a moving target.

    Despite various approaches, we still see recurrence over and over....I'm of the thought now (after 3 myself) that once we recur....we're more prone to recur....and we recur in a much shorter time frame.

    If we took 100 of us...and all of us got the EXACT same drugs....and ate the EXACT same things....and did the EXACT same exercise program....etc.etc.....there will be those that do good, while others did not.....some of us would make it....while others of us would not.

    And of course, there is that very old and tired line that we throw around up everyday..."We all react differently."

    And, of course, there is a lot of truth in that....and that's why there is no panacea to cancer...and why there will never be a complete absolute answer that "If we do this - then we achieve that".....and then 'that will be that.'

    I've tried several different ways...and got clear all times....but recurred each time...and waiting to see how this last time goes...I don't think for me that it's IF anymore, but rather WHEN.

    I've had it off and on for so long now. Just keep trying and fighting as long as you can...I think that's all that any of us can really do.

    -c

    Thank you, Craig. Great
    Thank you, Craig. Great pearls of wisdom.

    I have to say that I have found peace with my prognosis.
    I have had a good life with many blessings and you know that is what the circle of life is all about. I find great comfort in what you have written. It lets me know others are there feeling the same thoughts.

    Pete is so right - don't waste a precious day, i say to myself.

    As Steve Jobs said Death is a Destination we all share.

    There is peace in understanding and accepting.

    Hugs,

    Lizzy
  • crazylady
    crazylady Member Posts: 543 Member
    Hi Craig,

    In March it will be 8 years since I was diagnosed with rectal cancer. I don't even call it a recurrence anymore. It has been so long since I was clear that I always have cancer. It's now a matter of how much growth occurs or maybe there's stability for a while if I'm lucky. My scans in early November showed considerable growth. I have run out of chemo options and carry the Kras mutation. I was tested for different tumor markers for some drug trials and have none of them. I have been off of chemo since the end of October which really scares me. I had scans last week and on Tuesday I will start chemo and revisit some old drugs hoping that they can keep things stable until something new comes along. I know I'm lucky to be alive, but I'm not ready to give up yet. I can't really say why I'm still here when many people aren't. I'd like to believe it's because I've always been very aggressive about treatment, I'm very stubborn and I always seem to have hope. Honestly though it's probably just dumb luck. Either way I'll take it.

    I hope that you achieve all of your goals!

    Jamie
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    crazylady said:

    Hi Craig,

    In March it will be 8 years since I was diagnosed with rectal cancer. I don't even call it a recurrence anymore. It has been so long since I was clear that I always have cancer. It's now a matter of how much growth occurs or maybe there's stability for a while if I'm lucky. My scans in early November showed considerable growth. I have run out of chemo options and carry the Kras mutation. I was tested for different tumor markers for some drug trials and have none of them. I have been off of chemo since the end of October which really scares me. I had scans last week and on Tuesday I will start chemo and revisit some old drugs hoping that they can keep things stable until something new comes along. I know I'm lucky to be alive, but I'm not ready to give up yet. I can't really say why I'm still here when many people aren't. I'd like to believe it's because I've always been very aggressive about treatment, I'm very stubborn and I always seem to have hope. Honestly though it's probably just dumb luck. Either way I'll take it.

    I hope that you achieve all of your goals!

    Jamie

    Jamie...
    ...and you too:)

    I turn 8 in June 2012.

    It may be luck...but I can tell you that stubborness and orneriness does carry you a long way....sounds like we both drank from the same fountain.

    Wishing you the best...and thank you for your post.

    -Craig
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    Thank you, Craig. Great
    Thank you, Craig. Great pearls of wisdom.

    I have to say that I have found peace with my prognosis.
    I have had a good life with many blessings and you know that is what the circle of life is all about. I find great comfort in what you have written. It lets me know others are there feeling the same thoughts.

    Pete is so right - don't waste a precious day, i say to myself.

    As Steve Jobs said Death is a Destination we all share.

    There is peace in understanding and accepting.

    Hugs,

    Lizzy

    Lizzy:)
    I'm so proud of you and how you are looking at things - I hope to one day be able to carry myself in the same manner. I am glad that anything that I can say has helped you...to see you comforted, does a great deal in comforting me too.

    Continuing to stand by you...

    -Craig
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    faith_2 said:

    Wow!
    Wow! You are an amazing person and gifted writer, Craig. Thank you for all you put into this site. I am a "lurker", not usually a poster. My 45-year-old son recently had a recurrence of his stage IV colon cancer (first diagnosed Dec 2010) and is in the middle of his second round of chemo. Your thoughtful, compassionate, and truthful posts help more people than you know.

    Out of the Shadows - And Into the Light...
    Hi F2

    I'm glad you stopped by...thank you so much for your kind words. Just wanted to pass along best wishes for your son....I was between 45 and 46 when recurrence found me...just had my 3rd one and currently doing ok - just turned 50.

    Tell him to hang in there and I wish him the best in his fight. Thanks again for coming by...the very best to you and yours:)

    -Craig
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    yoga said:

    Craig . . . . your writing moves me and inspires me . . . .
    Craig,

    Wow! I read your post twice . . . . you have such an incredible way with words. I am sitting here with tears in my eyes thinking of you and the others who are looking at the possibility of recurrence - how amazing all of you are to me.

    My story is a little different in that I was diagnosed in July of 2010 and have been on almost continual chemo since that time with no surgery because my liver had about 20 tumours - no idea what the count is at the moment, and I really don't want to know. Tomorrow will mark the start of chemo #34 for me. My last scan, in late November showed that FOLFIRI was no longer working and that things were once again growing in my liver. I then switched to FOLFOX; my treatment last week was cancelled because they felt that my hands were far to blistered for another round of 5FU . . . . . hopefully tomorrow I will get the go-ahead. Wednesday I get another CT scan with results on Friday. I have been worried about the scan for weeks now - something just doesn't 'feel' right in there - but I hope I am wrong. Surgery is a very distant hope for me - but one that I will not give up on. I hope that my oncologist doesn't give up on me yet.

    I have digressed somewhat in my original intent here . . . . . you. I truely have the greatest respect for you and your ability to put your thoughts and feelings into your posts.

    Know that you and all of the others on the site are often in my thoughts and prayers. I am so often moved to tears when I read of the struggles and suffering that so many go through to continue hanging onto this precious life that we have been blessed with.

    Warm cyber hugs to you from Ottawa . . . . . if I ever get to Texas (and it is on my 'to do' list!) I hope that I will be able to meet you and have a long talk about your journey.

    yoga jo

    Yoga:)
    Your post touched me and I just wanted to say thank you so much for your your kind sentiments. I'm truly honored. I've followed your story and I know the road is difficult...sometimes we don't even want to look too far on the distance...sometimes, it's just too much to bear - and too painful to contemplate.

    34 is alot of chemo...I've done 51 of 'em and currently on hold...but it's been hard on me and really took a lot out of me this last time. Too much more of that and my renal system is going to fail. Sad what we have to go through.

    I am hopeful that something will work for you - and would love to see you become a surgical candidate - that's the prize that we all want and understand it is the biggest thing we can do to increase our odds and more importantly, our longevity here. We will both onto this hope that you will get there.

    Your confidence and support in me is overwhelming and it fills my heart to the brim reading what you had to say...it gives me this belief that my book project is of a noble and worthy venture - and that if I can reach folks like you, perhaps I could more folks, if I can get this thing published.

    BTW, stay tuned....there is a promising development in the works that I hope will come to frution...

    And if you ever find yourself Texas bound...we will meet and talk as long as you want to:)

    I'm a pretty good listener as well as a long winded sob:) LOL!

    -Craig
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    alexinlv said:

    You are a gifted writer,
    You are a gifted writer, Craig! Thank you for the time you take to profoundly express about this horrible disease so many are fighting. As a caregiver, I am moved to tears and it truly helps me understand what my husband may be thinking but won't say. God bless all of you who are fighting cancer!!

    Alex:)
    You are more than welcome! And thank you too for your kind words...I'm glad to be able to give you some insight into the workings of the male brain...

    And we certainly appreciate our caregivers too:)

    -Craig
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Kenny H. said:

    Great post Craig.
    You said it all and are a great inspiration to me. Agree with you on Petes situation.
    Cancer is such a beast no matter what you do IT does what it wants and makes the rules.

    So glad you are a part of this community & thanks for all your input. Im a pretty much a cancer newbie (2nd yr but with a recurance to lungs) dont post a whole lot but read regularly.
    Looking to the day (God willing) I can say 5yrs NED.

    Saludos, (fellow Texan)

    Saludos, Kenny
    Hey Buddy

    Thanks alot, man...makes me feel good that you feel this way...I'm glad you're here as well. Following your story with keen interest...thanks for your continued support!

    -Craig
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    Sincerest thanks
    dear craig and all,

    amazing , wow, thanks. i sincerely appreciate your reflections and the time and effort to put them down.

    see the post mind games 101

    Reading your post over and over has given me clarity and peace.
    our forums rules like just telling "our experience" and not preaching, i try to follow.
    what we share is food for thought.

    i firmly believe the key to my survival and quality and enjoyment of life for me is knowledge. we raise the bar of patient knowledge here, we then can demand the best treatments. i have a treatment plan from germany that seems much better to me.

    i have learned so much here, from so many, factually and emotionally.

    i felt my sharing would at least show one way, to build our communities collective knowledge and value.

    Harmony over ego i think should always be our rule.

    my obsession started the night i was diagnosed.

    i use the word obsession carefully, as i have friends mother inlaw with pancreatic cancer asking me for suggestions.

    i know how expensive my regime is in terms of resources, money, time, support, opportunity cost. I sms'd my integrative gp's number and said if her sons will not come to the initial consult then almost don't bother. as the pressure of being given a regime ( with no guarantee ) and then no capability to follow it is cruel. so i would not even bother.

    don't waste a precious day, i say to myself.

    thanks again craig, i have put a link to this post from my blog as you know i tried, or as some here know "am trying" . in many senses of the word.

    hugs,
    pete

    ps i have issues with markers, goals, 5 year targets. the best target for me is if today is my last day, have i lived it well. the answer is mostly yes.
    so i do my best and have no time for regrets.

    Thanks, Pete
    As always...it's never about the message itself - rather it is the 'tone' with which it is delivered:)

    -Craig
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Craig how long ago did you
    Craig how long ago did you have your most recent recurrence. I am a 6.25 year stave IV survivor. I just had my second recurrence. Had my right lobe a part of my diaphram removed along with a tumor on my abdominal wall. I had a portacath put in on Friday after 4 years of remission. I feel like someone on parole who just violated his parole and is being thrown back in prison. I start treatment tomorrow. They cut all of the visible cancer out but I am hoping that "mop up" will work this time. I am also one of those survivors who is harcore into the mostly vegatarian, organic diet and an avid mountain biker. This most recent recurrence definately has me questioning everything that I do and have done. So many things that you said in your post REALLY hit home with me that is why I ask how long ago you had your most recent recurrence.

    Thank you for sharing so much of your thoughts with us.

    Jeff
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    Craig how long ago did you
    Craig how long ago did you have your most recent recurrence. I am a 6.25 year stave IV survivor. I just had my second recurrence. Had my right lobe a part of my diaphram removed along with a tumor on my abdominal wall. I had a portacath put in on Friday after 4 years of remission. I feel like someone on parole who just violated his parole and is being thrown back in prison. I start treatment tomorrow. They cut all of the visible cancer out but I am hoping that "mop up" will work this time. I am also one of those survivors who is harcore into the mostly vegatarian, organic diet and an avid mountain biker. This most recent recurrence definately has me questioning everything that I do and have done. So many things that you said in your post REALLY hit home with me that is why I ask how long ago you had your most recent recurrence.

    Thank you for sharing so much of your thoughts with us.

    Jeff

    Jeff
    It was confirmed in the O/R last year July 2010...tumor was about the size of a tangerine and had embedded itself in my rib cage and was very close to the spine...surgery got most of it, but we did not achieve clear margins...and so we had to do 30x IMRT radiation w/5fu pump 24/7...and when that wrapped, we went back to Folfiri (I had 2 rounds prior to radiation starting) and did that for 5 more months.

    I got back to a watch and wait state for the 3rd time...scan cycle #3 coming up on the 30th and I'm hopeful that all will be well for now.

    I know what you mean, Jeff....once you experience recurrence, it really messes with your head...and as you say, has you rethinking "everything." You begin to see things "a certain way" since you've been 'in the bush' so long. I think one begins to understand things as they progress to the next level of their physical fight as well as their understanding of the disease itself.

    From where I'm at on my 3rd time, I'm just starting to believe that once we recur, that starts some kind of a chain reaction. I'm wary of #4 and not naive enough anymore to think that at some point, it won't find me - not IF but WHEN.

    When I met you and saw you had gone 4 years and then recurred, it spoke to me in volumes...I think it spoke to you as well. I think that what you and I see is that despite various ways to battle the disease, it always seems to stay one step ahead of most of us.

    It makes me feel good to know that my post has resonated with you...especially for another long termer:) This lets me know that I'm on the right path and I thank you!

    -Craig
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Sundanceh said:

    Jeff
    It was confirmed in the O/R last year July 2010...tumor was about the size of a tangerine and had embedded itself in my rib cage and was very close to the spine...surgery got most of it, but we did not achieve clear margins...and so we had to do 30x IMRT radiation w/5fu pump 24/7...and when that wrapped, we went back to Folfiri (I had 2 rounds prior to radiation starting) and did that for 5 more months.

    I got back to a watch and wait state for the 3rd time...scan cycle #3 coming up on the 30th and I'm hopeful that all will be well for now.

    I know what you mean, Jeff....once you experience recurrence, it really messes with your head...and as you say, has you rethinking "everything." You begin to see things "a certain way" since you've been 'in the bush' so long. I think one begins to understand things as they progress to the next level of their physical fight as well as their understanding of the disease itself.

    From where I'm at on my 3rd time, I'm just starting to believe that once we recur, that starts some kind of a chain reaction. I'm wary of #4 and not naive enough anymore to think that at some point, it won't find me - not IF but WHEN.

    When I met you and saw you had gone 4 years and then recurred, it spoke to me in volumes...I think it spoke to you as well. I think that what you and I see is that despite various ways to battle the disease, it always seems to stay one step ahead of most of us.

    It makes me feel good to know that my post has resonated with you...especially for another long termer:) This lets me know that I'm on the right path and I thank you!

    -Craig

    Thanks for the reply Craig.
    Thanks for the reply Craig. I used to believe that I was cured each time. I still think cure is possible after each surgery. But like you said I am not naive. I do know that the likelyhood of recurrence is very high, but there are new drugs on the fast track for approval, hopefully this year which are good options for us if we need them down the road. I hate this disease and will NOT give in to it. It is a challenge to me to fight it everyway I can. Everyday I wake up is another small victory.

    I like you truly love this forum and all of the people on it. You are all heros to me. Only stage IV cancer survivors can truly understand what we are going through. Hearing the words recurrence is definately harder than hearing the words you have cancer for the first time. You would think it would get easier each time but it gets harder.

    Cancer can be a very lonely disease. Evan though I have a loving wife and am surrounded by many people who support me any way they can I still feel isolated at times. Here I feel at home. We all experience many of the same emotions to one degree or another.
  • elizabethgd
    elizabethgd Member Posts: 145

    Thanks for the reply Craig.
    Thanks for the reply Craig. I used to believe that I was cured each time. I still think cure is possible after each surgery. But like you said I am not naive. I do know that the likelyhood of recurrence is very high, but there are new drugs on the fast track for approval, hopefully this year which are good options for us if we need them down the road. I hate this disease and will NOT give in to it. It is a challenge to me to fight it everyway I can. Everyday I wake up is another small victory.

    I like you truly love this forum and all of the people on it. You are all heros to me. Only stage IV cancer survivors can truly understand what we are going through. Hearing the words recurrence is definately harder than hearing the words you have cancer for the first time. You would think it would get easier each time but it gets harder.

    Cancer can be a very lonely disease. Evan though I have a loving wife and am surrounded by many people who support me any way they can I still feel isolated at times. Here I feel at home. We all experience many of the same emotions to one degree or another.

    thoughtful
    have recently been reading the posts here.. many of us face recurrence. the recurrence talked about with such insight brings us back here.... like going home.. looking for the comfort that comes from others knowing what we are being dealt.. strangers who have first hand experience with our inner thoughts feelings fears and ..the big disappointment--even though we always try to prepare ourselves.. we are never ready for the recurrence. It is comforting somehow to know there are others who know what we are going through.At the same time we wish that no one ever had to know. Sending good wishes to all of us..one day at a time..
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    Craig
    I'm reading this a little late Craig....you are NOT alone buddy...the life line ties us together! you brought up many things I think about!

    Love, gail