Decision time- thoughts welcomed

13»

Comments

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

    NEw treatments
    Thanks for the info- will have a look. I am not convinced that chemo of any sort will offer a good chance of cure for me but am keeping my eyes on all new treatments so will see what I can find out about this.

    Thanks a lot for the information,
    steve

    Steve -

    I hate to read of people suffering in this manner.....

    I hate to sound brazen or condescending, but as a physician,
    have you totally ruled out TCM, or would that still be a possible
    medical science that you may want to consider along with or
    in place of, such radical measures?

    My best of hopes, whatever your choice,

    John
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Steve
    It's such a tough call and having young kids make it even tougher.
    Only you can decide what is best for you...
    I wish you strength and peace,
    -phil
  • janie1
    janie1 Member Posts: 753 Member
    PhillieG said:

    Steve
    It's such a tough call and having young kids make it even tougher.
    Only you can decide what is best for you...
    I wish you strength and peace,
    -phil

    Oh Steve, why is everything
    Oh Steve, why is everything sooo hard.
    I wish you the best in making these decisions, and a very good outcome down the road in whatever you decide.
    Bless you and your family.
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    I came
    after reading tori's post on my fb group, going to pm you and you better follow it mr it's 3.19am been up for two hours with a sick cat lol. seriously though hopefully it will be helpful.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    steve my heart aches but i know you will make a brave decision
    you can count on my support whatever you decide. i have appreciated your kindness to me at more vocal moments here.

    if i were you, i would be practicing hoping around with some bags taped on.
    my father in law has a pee bag, i had the poo bag. it just another bag.

    my adoptive father had one leg, he loved my dearly. i found him dead at 14 from a heart attack. he lived his life with courage and mateship. i am the man i am with no fear, just hope driving my decisions because of his example and love. now when i die more awareness and my direct involovement to make this planet better ceases in a physical sense. so you need to keep on breathing.

    here is the biggy, i was meditating deeply at the ian gawler "the brain the changes everything" weekend seminar. into my blackness, my awareness i here a clip, clop, clip, clop.

    it is ian, on his one leg abd crutches going down the isle. he reminds me of my father. ian lost his leg about 30 years ago to bone sacroma, checkout his amazing story, "you can conquer cancer".

    a few examples of one legged men that inspire me, you may be another if it has to come to that. now i have discussed you post with my kids, my wife and my weight trainer vegan guru. he focus on my health is more focused, its not driven out of fear, but love of life and based around courage. everything i am doing is based on the gawler foundation framework, but i found me truths myself, but here it from another source was all the confirmation i needed to stick to my plan for my treatment for this challenge i have. you have a differnet challenge, but i suggest courage and peace of mind will allow you to make the right decision for you.

    living on a raw vegan diet, juicing, meditating etc etc are so simple, now i have mastered them. what is hard is our attachments to our old western life. if you want to read a great survival story read ian's book, its motivated me and gives me hope. it may also be good you.

    last night my daughter mel sang in a 2000 kids choir at our entertainment center in front of 20000 people, what an experience for her, for me and my family and friends. our kids grow fast and so do we.

    whatever you decide i hope you have peace of mind, its healing and helps when making big decisions. it helps with living a full and wonderful life. full stop. if its you cup of tea, try a little mediation not medication. its also good for pain relief.

    hugs,
    pete
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    wow
    Steve,
    Tough choices for you ahead.
    I had a dx of sacral cancer last year - the put your affairs in order kind. I wanted so badly to be around for another grandchild or two. It turned out not to be cancer at all. Funny thing is it changed me as much as my cancer dx did. Now that I have been around for another year and saw the birth of a couple more grandchildren I can honestly say that seeing those kids born and growing up has caused me to resolved to do whatever it takes to be there for as long as possible. I LOVE those kids (and mine). I don't know what the conditions would have to be to cause me to wish for anything but to live as long as possible, but I do know right now I would live with just about anything in order to stay around for a while longer. I feel like I have more life to live. Sounds like you do too.
    I hope you find peace with whatever you decide.

    Rick
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    I always have an opinion, but...
    Wow - what a tough spot to be in. I'm all for surgery, but I'm also all for quality of life, even over quantity. For a guarantee of no more cancer - heck yeah. But without the guarantee - almost impossible to make that decision. I totally understand the difference of making decisions when you have young children involved too. There are things you would never consider, but will for them. (Mine were 13, 15, 18, and 21 at my dx - older than yours, but I get it.)

    Talk it out with your family. Talk it out with your clergy person if you have one. Talk it out with a counselor. Talk it out with your medical team some more, until you find which direction has more positives and which more negatives for you. And once you make your decision, go forward and never look back - no "what-if's" allowed.

    I really feel for you. I wish there was more we could do for you, but ultimately this is your decision - the toughest one you'll likely ever have to make. No matter which way you decide, my wish for you is peace with your decision.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    steved said:

    OTher chemo
    I have looked at chemo options- I have been on irinotecan and have discussed teh new ones with my onc as wellas looked at the data on them. In truth no chemo is likely to offer me a cure. The evidence suggests in stage 4 for pretty much everyone they are holding tactic. They prolong the nonprogressive phase of the illness but are unlikely to kill it. It is the same as my understanding of Taanstfak approach- he is an expert at techniques to combat the illness but I feel they are mainly going to hold teh illness at best.

    In truth in this battle surgery is the main option to offer cures- best chance at that first surgery removing the primary before it spreads, but still some chance if your secondaries are sufficiantly localised in places they can cut out.

    That bluntest tool of the sharpest scalpel remains our biggest weapon (feeling poetic today).

    (I will try and find time to relook at the two new chemos and comment my impressions of them on another post as I know you are exploring them and I have foind some reading I need to wade through on them)

    steve

    clarification
    Just to clarify our strategy is:
    "Comfortable" multimodulated immunochemo even during surgery to stop new mets (#1) and shrink/eliminate/inhibit old tumors, multiple surgeries to definitively eliminate local lesions when (finally) identified rather than "heavy chemo" only. We use surgery to achieve lower CEA or tumor burden, and plan to use surgery beyond the "normal" limits of maximum tumor sites instead of chemo to address metastatic masses.

    An outstanding question of efficacy is whether we could debulk (R1, R2), if it were necessary, to avoid critical structures and still make net progress without inciting metastasis. Our first time, my wife apparently had an R2 situation with the mesentery but the immunochemo even before the UFT(5FU) treatment wiped the fatty invasion but not the primary or para-aortic cluster(second surgery).

    In the case of an aortic involvement, our surgeon was confident to do the block cut and artery repair if necessary (wasn't).

    We aim to:
    successively, curatively remove individually (old) tumor sites as they are recognized after watchful waiting;
    "stretch out" the intervals between surgeries with multimodulated immunochemo AND max QoL.
    It was this multi-trim and stretch out strategy that I was wondering if it could be adapted, where more tumor cell control after R1, R2 is required of the multimodulated chemo.
  • WhatsA_Mom2Do
    WhatsA_Mom2Do Member Posts: 46

    I always have an opinion, but...
    Wow - what a tough spot to be in. I'm all for surgery, but I'm also all for quality of life, even over quantity. For a guarantee of no more cancer - heck yeah. But without the guarantee - almost impossible to make that decision. I totally understand the difference of making decisions when you have young children involved too. There are things you would never consider, but will for them. (Mine were 13, 15, 18, and 21 at my dx - older than yours, but I get it.)

    Talk it out with your family. Talk it out with your clergy person if you have one. Talk it out with a counselor. Talk it out with your medical team some more, until you find which direction has more positives and which more negatives for you. And once you make your decision, go forward and never look back - no "what-if's" allowed.

    I really feel for you. I wish there was more we could do for you, but ultimately this is your decision - the toughest one you'll likely ever have to make. No matter which way you decide, my wish for you is peace with your decision.

    Steve, this was a tough post
    Steve, this was a tough post to read through my tears. You have already been given wonderful suggestions by the members here. I only want to offer my support and prayers to you and your family as you are faced with these choices, which are never easy. Go with your gut, go with your heart, go with what will give you the best chance of being with your family and with what will give you the QUALITY OF LIFE you desire! I do second some of the advice on looking into natural approaches...has worked MIRACLES for my son! God speed and all the best to you and your family! Dee
  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member

    Steve, this was a tough post
    Steve, this was a tough post to read through my tears. You have already been given wonderful suggestions by the members here. I only want to offer my support and prayers to you and your family as you are faced with these choices, which are never easy. Go with your gut, go with your heart, go with what will give you the best chance of being with your family and with what will give you the QUALITY OF LIFE you desire! I do second some of the advice on looking into natural approaches...has worked MIRACLES for my son! God speed and all the best to you and your family! Dee

    Courage, my friend

    Steve,

    This is a terribly difficult decision but I sense the answer is within you. Daddy is Daddy is Daddy seems to speak from your posts.
    I have nothing to add to the words of wisdom offered but want you to know that I hold you and those you love in my heart.

    Your posts have frequently helped me and I want to thank you.

    Remember, kids are incredibly resilient. They are very blessed to have you as their Dad.

    Wishing you strength, courage, peace,and many more years.
    Cathleen Mary
  • manwithnoname
    manwithnoname Member Posts: 402
    Just a sec...
    " There are no other potentially curative options " that's what our oncon told us for our son's brain tumour, gave him a few months....we aren't going down without a fight.

    First of all I shouldn't even be here, I don't have colorectal, don't even know anybody with it, I came here coz I found Pete and his Gc-MAF experiment.
    I gather you are a Doc. so you know how bad it is with recurrent tumours.

    Now take this how you want, I hope you will read the literature and make an informed decision.

    If you have a tumour sample in paraffin block do Proteomic testing, Dr. R.E Brown Texas will give you the pathways to target. $5000 US
    Newcastle disease virus, you can use lasota strain if you can't find MTH-68
    Metformin 2000mg per day
    Thioridazine 21 days max
    Both of the above target cancer stem cells without damaging normal cells.

    Now if you can afford it; Gendicine gene therapy maybe an option. @$35000 US (In China) Gendicine targets P53

    They told us it was 'possible' to get our son's tumour with the risk of his sight and then him dying anyway not long after, it's a quality of life thing...

    Sorry you are in this situation, take care, and what ever decision you make is the right one.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Sorry
    So sorry that you have to make such a difficult decision. Glad that you are able to talk to your wife about this, that is important and she can help you talk it through. You are in my thoughts and prayers.

    Kim
  • steved
    steved Member Posts: 834 Member

    Sorry
    So sorry that you have to make such a difficult decision. Glad that you are able to talk to your wife about this, that is important and she can help you talk it through. You are in my thoughts and prayers.

    Kim

    Thank you
    Thanks again for the more recent replies.

    There has been some good alternative suggestions made and I have had some PMs about others. I have personally found this challenging as it hits that spot of doubt we all carry about 'have I done everything possible'. I think that is why conflicts on this board often stem from that difference- it is an acutely sensitive spot to all of us as we make our treatment decisions on this journey.

    I have decided at present not to advance any alternative treatments but have learnt a lot from people's suggestions and taken them seriously enough to now have a pile of information on many of them including traditional chinese treatments. I guess much of it comes dwon to finding those treatments that also best match our own views, values and core beliefs. For me those sit within conventional medicine and the others I have found may play a supportive role for me at the right time.

    So I am continuing to find more about the surgery and am still leaning that way. Will decide when we meet the surgeons and the team in a couple of weeks. Will talk to our kids when we know more after that. Writing my thoughts and reading all yours has helped enormously in clarifying my thoughts. Ultimately my over riding drive is as dad to my kids and that is what I want a chance to be into the future.

    Thank you all again for the information. thoughts and prayers (even as an atheist they mean a huge amount and equate to unmeasurable kindness from people I have never met).

    steve
  • Patteee
    Patteee Member Posts: 945
    Hi Steve
    I remembering

    Hi Steve

    I remembering reading your post months ago, and have been praying over the miles for answers and peace for you and yours. And now, here the time has come. I know you have some challenging days and times ahead of you. I so so do know that in your position, that I would be making the same decision, with the same uncertainity and the same fear. The 2 young children are the clenchers for me. It is almost like you have to put your pride aside and realize the true core piece of who you are will never change and your children's love will ground you and get you through this. (not to mention your wife, family and friends). Steve, you will not be less of a man with one leg and 2 bags. YOU WILL STILL BE STEVE, A DOCTOR, A HUSBAND, A FATHER- a valued memeber of this board, and a contributor to your community and patients. YOU WILL SEE THOSE GREAT KIDS GROW UP!!!!!!!!!!!!! Believe it, it will happen.
    Hugs and all the best from Minnesota,
    Patty
  • deb824
    deb824 Member Posts: 21
    steved said:

    Thank youfor your thoughts
    I have found people's responses incredibly useful- I am sorry that I am imposing my feelings impotence in this decision on others as I know there is no 'right' answer and no specific thing others can say but hearing people's thoughts has helped enormously to get my own head ('ducks' to quote another regular) in order- you guys are my mirror I can sit infront of for therapy.

    Thank you also for the thoughts around the children- I have so many supportive and sensible friends locally who are also parents but none face dilemmas like this and so your thoughts mean so much (I still feel surges of irrational jealousrage that my friends lead such straight forward lives). I cope fairly well with most of this but still find thinking about the impacts on my children the one intolerable avenue I can hardly bear to go down.

    Thank you again for all the marvellous responses.

    steve

    I am new but had to comment
    I am new but had to comment on your post. I can't even imagine how you must feel, but I applaud you on your strength and compassion for others as you go thru this journey. You took the time to answer my first post yesterday and I so appreciated it. After reading your post today, the fact that you took the time to try to help me makes even more grateful. My thought on what to tell children.....My daughter was 4 when my Mom was diagnosed with metastatic breast cancer. I fell apart and was crying alot and my daughter knew something was going on. I was advised to just tell her the truth without details. And that was the best advice I could get. Good luck Steve you are so very brave I wish for you a good outcome whatever you decide. I will keep you in my prayers.
    Deb
  • rick1964
    rick1964 Member Posts: 5
    Patteee said:

    Hi Steve
    I remembering

    Hi Steve

    I remembering reading your post months ago, and have been praying over the miles for answers and peace for you and yours. And now, here the time has come. I know you have some challenging days and times ahead of you. I so so do know that in your position, that I would be making the same decision, with the same uncertainity and the same fear. The 2 young children are the clenchers for me. It is almost like you have to put your pride aside and realize the true core piece of who you are will never change and your children's love will ground you and get you through this. (not to mention your wife, family and friends). Steve, you will not be less of a man with one leg and 2 bags. YOU WILL STILL BE STEVE, A DOCTOR, A HUSBAND, A FATHER- a valued memeber of this board, and a contributor to your community and patients. YOU WILL SEE THOSE GREAT KIDS GROW UP!!!!!!!!!!!!! Believe it, it will happen.
    Hugs and all the best from Minnesota,
    Patty

    Steve
    I'm sorry to hear

    Steve

    I'm sorry to hear about your problem. I also had Rectal Cancer in 2009 Stage I and I'm NED. This is my opinion on this matter because I have thought about this if I had recurrence in the pelvis area. I told my wife that I would not do surgery and just would fight it with Chemo. Losing everything in your pelvis area plus your leg with out knowing if it will work or not it just to much. I made up my mind on this matter long time ago in case this come up down the road for me. Good luck to you on your decision.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    rick1964 said:

    Steve
    I'm sorry to hear

    Steve

    I'm sorry to hear about your problem. I also had Rectal Cancer in 2009 Stage I and I'm NED. This is my opinion on this matter because I have thought about this if I had recurrence in the pelvis area. I told my wife that I would not do surgery and just would fight it with Chemo. Losing everything in your pelvis area plus your leg with out knowing if it will work or not it just to much. I made up my mind on this matter long time ago in case this come up down the road for me. Good luck to you on your decision.

    Steve...the other night
    Steve...the other night hubby and I went out for dinner to a buffet restaurant ... sitting in a wheel chair was a young dad with his wife and two little boys. He had one leg missing from what I could see was way way up (he was at the next table and I was drawn to looking at him because I immediately thought of you....trying not to make my curiosity obvious) I was looking at this big strapping young man (and I mean big strapping, the rest of him was quite built) in a wheel chair and wondered what had happened to him. My normal thoughts were he must have been in some sort of accident, but maybe he had this cancer. He was back and forth to the buffet with his kids, enjoying a dinner out with his family.