cyberknife a no go

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LOUSWIFT
LOUSWIFT Member Posts: 371 Member

I just got a call from Cyberknife at Lack's Cancer Center. They have turned me down for Cyberknife. Apparently since my cancer is in a node and there are several small cancers froming on my liver I am not a good risk for any sucess. They predict I have somewhere between three months and a nine months before...I...you know. I don't see any alternatives. Chemo has always done more damage then good and being sick my last few months doesn't seem to be a good choice either way. I really thought Cyberknife might give me a shot....six months ago I was NED with a CEA less than 1. Well I did live about eleven years beyond my first bout and all those years with the treatments weren't that good but I saw the birth of three more grandkids. I generally had to spend my time attached to a toilet which made doing things I enjoyed out of possibility. I know its not like me to give up but wjha can I do? It's funny I feel better this last week then I have for years. I hope I face death with courage and die a man of honor who made his family proud. Thank You all my friends here for your support. Best of health to you all. Lou

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  • Luv2lunch
    Luv2lunch Member Posts: 270
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    Sorry

    Hi Mr. Lou,

    We just wanted to say how sorry we were to read your news. I don't know much about cyberknife and such as Mom has been doing well for over 4 years now. I just wanted to say we will be saying extra prayers for you. I believe in miracles and will hoping and praying that one comes your way.

    I'm sorry if this sounds simple and maybe silly but I wanted you to know we were thinking of you and your family.

    Please take care.

    Sincerely,

    Linda and Miss Ellie

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
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    Sad News Lou

    Lou,

    I met a women who has been in hospice for two years and others on this board have beaten the odds as well.  No doubt it does sound bleak from where you sit, it would to me.  I personally do not believe that anyone knows the day or time of our death.  I also believe that we should not let those others give us expectations.  I think that every one of us can only live each day to its fullest, which is what I think I am hearing in your post.  By the way...must have been nice to see the new grand babies.

    Lou, please let us know how you are progressing.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    I am so sorry.

    Sorry that you were not able to get your tumours taken care of with CYBERKNIFE, and sorry that they have decided there is nothing more that can help you. 

    We will walk this path with you, and pray that your six to nine ends up being years and not months. 

    Stick with us here, Lou, we want to support you all the way. 

    Sue - Trubrit

  • Nana b
    Nana b Member Posts: 3,030 Member
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    Sad News Lou

    Lou,

    I met a women who has been in hospice for two years and others on this board have beaten the odds as well.  No doubt it does sound bleak from where you sit, it would to me.  I personally do not believe that anyone knows the day or time of our death.  I also believe that we should not let those others give us expectations.  I think that every one of us can only live each day to its fullest, which is what I think I am hearing in your post.  By the way...must have been nice to see the new grand babies.

    Lou, please let us know how you are progressing.

    Why not try Gerson or the

    Why not try Gerson or the Baja Rosorito Gerson Center.  Many patients post through a website asking for assistance and many get the money they need for their treatments. There are progrmS out there and people that have money but want to help. 

     

    You  can google the official Gerson but this is the other one just a few miles from Gerson. Dr Vickers, who isn't the main doctor, worked for Charlotte Gerson. This is just a suggestion, can't gurantee anything but you really have to be committed for two years To follow Gerson diet. Some believe, some don't. But I will go, after the trial I am on.  It's expensive, luckily I have it and like I said others can raise the money. Dr vickers has these links.  So does  the Gerson Clinic. I have his cell phone number and email address if you want it  

     

    http://youtu.be/GVYt7vP0ZL8

     

    Are you in Ca, can you do the trial I'm doing?  Do you meet requirements? 

     

    Hang in there, and try and stay strong. Hugs. 

  • Easyflip
    Easyflip Member Posts: 588 Member
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    Hey Lou

    We have all thought about what we would do when we got the 'you have x amount of time' speech, I know I have. Have you thought about Cannabis oil? It might be a longshot but what the heck? At a minimum it is an anti nausea and anti pain drug that stimulates appetite.  Plus it gets you high, there are plenty of healthy people getting 'medicated' daily. Things may seem hopeless and you probably want to just give up but you never know, I hear crazy survivor stories all the time.

    And when you do finally pass, which we all will and yours may be a long ways from now, don't worry, you will go with grace, courage and dignity. The fact that you voiced it in your post means it'll happen. I'm going to go that way too. Keep us posted and remember, you're not alone : )

    Easyflip/Richard

  • LindaK.
    LindaK. Member Posts: 506 Member
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    Admire you Lou

    I admire your attitude.  Courage and grace are all we can all hope for in the end. 

    Linda

  • Akroger
    Akroger Member Posts: 88
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    I am so sorry Lou

    It's devastating when the doctors tell you that a procedure isn't a good risk for success, especially after fighting and suffering so long.

    But even if your doctors can't offer much more in the way of treatment, there is no reason to resign yourself to the x number of months that they have arbitrarily estimated for you. There is so much that I've read on this forum and from other sources about the potential value of homeopathy and other non-conventional methods. I wish my mom would be open to trying some of them, but she either can't or won't, and there's nothing I can do to convince her otherwise. If you were NED just half a year ago with a CEA less than 1, surely your body is resilient and strong enough to maybe be able to fight again; you say you feel better this week than you have for years, so why not? Ending chemo will also give you the chance to strengthen and regain your health for a renewed fight through different means. Don't give up - we are all rooting for you to beat the doctors' prediction and join the ranks of the success stories that I've read so much about on CSN.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    Go to an IR to see if they

    Go to an IR to see if they can ablate it.

  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
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    Go to an IR to see if they

    Go to an IR to see if they can ablate it.

    IR

    I'm not sure what you mean by "IR". I should be able to find out next Wednesday why I was turned down for cyberknife. I suspect my oncolongist surgeon got a phone call and he swayed the Radiologist to determined Cyberknife won't work. My oncologist is more interested in me seeing hospice than continuing to fight. He gave me between 4 to 9 months but my 75 year old father-in-law lasted two years and was healthy except for the last two weeks of his life. Thank you all for your comments and support. Lou

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    I'm So Sorry

    I'm so sorry that you received this news.  You have been through this battle over and over again and now they are giving you a timeline.  Please see if you can get another opinion on this.  You have fought this so hard all these years and I've always been so proud of you continuing on.  The excitement you told about going to visit your first grandchild and then visiting the second.  You now have three.  It would be a wonderful thing if another doctor was sought out to give you a fourth grandchild to go visit.  My prayers are with you.  I've always followed you through your journey and want you to know that you are very much admired and such a value on this board

    Hugs!  Kim

  • annalexandria
    annalexandria Member Posts: 2,571 Member
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    LOUSWIFT said:

    IR

    I'm not sure what you mean by "IR". I should be able to find out next Wednesday why I was turned down for cyberknife. I suspect my oncolongist surgeon got a phone call and he swayed the Radiologist to determined Cyberknife won't work. My oncologist is more interested in me seeing hospice than continuing to fight. He gave me between 4 to 9 months but my 75 year old father-in-law lasted two years and was healthy except for the last two weeks of his life. Thank you all for your comments and support. Lou

    I think that's an Interventional Radiologist

    Lou, if you feel up to fighting, then FIGHT.  Keep looking for another option.  Jeff (janderson) is the best example I can think of for someone who just keeps looking for another path, when one gets shut down.

    It can't hurt to get a 2nd opinion.  And pls keep us in the loop.  We care.

    Big hugs~AA

  • Nana b
    Nana b Member Posts: 3,030 Member
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    I'm So Sorry

    I'm so sorry that you received this news.  You have been through this battle over and over again and now they are giving you a timeline.  Please see if you can get another opinion on this.  You have fought this so hard all these years and I've always been so proud of you continuing on.  The excitement you told about going to visit your first grandchild and then visiting the second.  You now have three.  It would be a wonderful thing if another doctor was sought out to give you a fourth grandchild to go visit.  My prayers are with you.  I've always followed you through your journey and want you to know that you are very much admired and such a value on this board

    Hugs!  Kim

    I have lung lesions and liver

    I have lung lesions and liver lesions the plan was to do chemoembilization first then cyber knife. Radiologist shot down cyberknife said lesions were too small, had  cyber knife twice minimal shrinkage. I wish i'd had the  Cyberknife.  Now they won't do cyber knife because more lesions have grown. Guess I should have listened to my first oncologist.   Now I'm on the new trial, hope that knocks our the boogers, even if I do lose my hair again?  

     

    Stay strong. Juice, take supplements. Stay away from processed foods, diary, and sugar, it's woeth a try. 

     

     

    you can eat sweet potatoes, potatoes, salad, sauted greens, berries, carrotts,   Both cooked and juiced. Try to walk as much as you can. I do walk around the inside of my house and do stretchers.  Get some sun.

    All  following keep coming up on Cancer summits and run for the cure, etc. 

     

    turmeric

    cayenne pepper  put on foods/soups/eggs

    milk thistle

     

    D3

    B16

    35% hydrogen peroxide food grade only and you need to dilute

    iodine for fungus

    oregano oil internally

    digestive enzymes

    Graviola  drops

    Pau D 'Arco herbal Tea

    Juicing greens

    smoothie berries for a meal

    eat raw veggies 

    use lemon as dressing for salad, add herbs 

    juice 4-5 3 organic carrotts and 3 granny apples  lot's of nutrients 

    google these, see their worth for yourself  they keep coming up...

     

     

     

     

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member
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    Nana b said:

    I have lung lesions and liver

    I have lung lesions and liver lesions the plan was to do chemoembilization first then cyber knife. Radiologist shot down cyberknife said lesions were too small, had  cyber knife twice minimal shrinkage. I wish i'd had the  Cyberknife.  Now they won't do cyber knife because more lesions have grown. Guess I should have listened to my first oncologist.   Now I'm on the new trial, hope that knocks our the boogers, even if I do lose my hair again?  

     

    Stay strong. Juice, take supplements. Stay away from processed foods, diary, and sugar, it's woeth a try. 

     

     

    you can eat sweet potatoes, potatoes, salad, sauted greens, berries, carrotts,   Both cooked and juiced. Try to walk as much as you can. I do walk around the inside of my house and do stretchers.  Get some sun.

    All  following keep coming up on Cancer summits and run for the cure, etc. 

     

    turmeric

    cayenne pepper  put on foods/soups/eggs

    milk thistle

     

    D3

    B16

    35% hydrogen peroxide food grade only and you need to dilute

    iodine for fungus

    oregano oil internally

    digestive enzymes

    Graviola  drops

    Pau D 'Arco herbal Tea

    Juicing greens

    smoothie berries for a meal

    eat raw veggies 

    use lemon as dressing for salad, add herbs 

    juice 4-5 3 organic carrotts and 3 granny apples  lot's of nutrients 

    google these, see their worth for yourself  they keep coming up...

     

     

     

     

    prayers

    And warm wishes.  I'm sorry for your news.  My dad used to tell me the doctors are not God.  Only God knows your timeline.

     

    Have faith,

    Yolanda

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
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    Yolllmbs said:

    prayers

    And warm wishes.  I'm sorry for your news.  My dad used to tell me the doctors are not God.  Only God knows your timeline.

     

    Have faith,

    Yolanda

    Lou,  I am sorry that they

    Lou,  I am sorry that they can't do the cyber knife but I agree with Jeff..consider ablation. At some point, we may all hear that nothing more can be done but believing it is our choice. I wish for you strength and peace and many enjoyable years. 

    CM

  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
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    Life in review

    Well interesting day. I got a call from my primary care physician who after several years decided to take a look at my Thyroid. I take a 100 mg's everyday for years now. Now it seems that that isn't enough so now that I'm terminal he decides to worry about my thyroid lol. All my doctors say I'm anemic and no one cares about that. Then I get a call from my surgerical oncolongist nurse and they needed me to go to the lab today and get a CBC and a liver panel before our meeting tomorrow afternoon. Again lol...what differece does it make? I checked back with cyberknife as to why I had been turned down for the procedure. They don't like doing lymp nodes even though I have one node about an 1 1/2 inch size tumor near my small intestine. They didn't like that there were several lesions (unknown number for now) that didn't light up on my Pet scan on my liver but my oncolongist saw them when he opened me up last week and saw small lesions that he knows are cancer. Well at least my umbilical hernia got repaired. It was causing me some serious pain at times. So he closed up the five laposcoptic cuts he had made and then made about a 6-8 inch cut to reapair the hernia. My wife is of the mind that she wants me to be happy and only my demise accomplishs that. I'm wondering if she might be a lot happier than I. Well banged out some frustration and depression on the old keyboard and sorry to lay it out there on my friends. Take Care Lou

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    Options
    LOUSWIFT said:

    Life in review

    Well interesting day. I got a call from my primary care physician who after several years decided to take a look at my Thyroid. I take a 100 mg's everyday for years now. Now it seems that that isn't enough so now that I'm terminal he decides to worry about my thyroid lol. All my doctors say I'm anemic and no one cares about that. Then I get a call from my surgerical oncolongist nurse and they needed me to go to the lab today and get a CBC and a liver panel before our meeting tomorrow afternoon. Again lol...what differece does it make? I checked back with cyberknife as to why I had been turned down for the procedure. They don't like doing lymp nodes even though I have one node about an 1 1/2 inch size tumor near my small intestine. They didn't like that there were several lesions (unknown number for now) that didn't light up on my Pet scan on my liver but my oncolongist saw them when he opened me up last week and saw small lesions that he knows are cancer. Well at least my umbilical hernia got repaired. It was causing me some serious pain at times. So he closed up the five laposcoptic cuts he had made and then made about a 6-8 inch cut to reapair the hernia. My wife is of the mind that she wants me to be happy and only my demise accomplishs that. I'm wondering if she might be a lot happier than I. Well banged out some frustration and depression on the old keyboard and sorry to lay it out there on my friends. Take Care Lou

    Bang more out if you want

    You come here and bang out all of the frustration you want to. Your friends here are here for that reason as well as other reasons. We are here to support and part of that support is listening. 

    Don't give up, fight the fight and be as happy as you can be. We want you around for many a year. 

    Good luck at your appointment tomorrow. Be sure and let us know what all goes on. 

    Sue - Tru

  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
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    Promise broken

    Well had my last meeting with a doctor today. I was sent to an Oncologist today. Apparently the gaggle of Oncologist; radiologists; and just plain doctors met about me yesterday. It was decided it is time for me to die. No it wasn't OBamacares 15 person conference who is decides who has value enough to live or die this was a hospital group. Anyway the oncolgists informed me they could try chemo some more which could delay my death but likely make the quality of my life very bad with what remains. The Cyberknife radiogist types decided that the size about 3 1/2 cm located so close to my small intestine and bladder would result in serious damage to those organs. Apparently, this cyberknife isn't as accurate as it is advertized and radiation will miss the mark. They feel this would make my chronic diarreha so bad that I might need to be hospitalized for dehydration and the inability to stop at all. After the meeting I don't really know why my surgerical Oncologist insisted I go see him. I have told everyone I would never do chemo again. Anyway they now want me to go see a palliative doctor. I guess his job is to address my symptoms increasing pain levels; liver failure; toxicity; diarrehea and vomiting. They  wanted me to go see him as soon as possible, I asked why the rush. Didin't I have a year to a year and a hald left. Apparently, that depends on which direction my tumor decides to grow....into bowel; into the bladder; into pancreas; who knows and maybe cancer will travel to my lungs or brain. Of course my wife went to pieces because she thought I had many months left and it could actually be about three months with at least several weeks of me being so sick and toxic that I don't know what's going on and can't control bodily functions. Then both my surgerical oncologist and this new oncologist both wanted me to come back in a couple of months just to see how I'm doing. I must admit I got a little angry. I asked them why? I'm going to die there is nothing you can do about it unless they need some additional BMW payments. My sureon refused to take out my tumor becuase he felt I could bleed to death on the operating table. This wasn't his choice. He should have spoken to my wife who would have told him to proceed as she and I discussed. She had my health care power and I would have preferred dying on the operating table then to let cancer kill me a day at a time. There was no reason for me to see an oncolgist since evryone knew I would not do chemo ever again. So why come back and see them in a few months.? Okay the palliative doctor sure. He will keep increasing my medications for pain until I'm so spaced out I don't know what's going on and whatever symptoms I may develop. My final advise to ong timers and newbies here. Never ever never trust your doctors do what's right for you. In the eleven years I'm been fighting cancer and being destroyed by all the great doctors treatments recommendations I found I would have been so much better maybe not facing death without the help of incompetent non-caring arrogant know it all professionals. Remember your value is your a billing number and your replacement (another cancer victim) is waiting around the corner. I recall the great treatments which cause my hands and feet to swell so badly I could not waer shoes; lost the nails of my hands and feet; had to wear gloves to type on a key-board (my job) ; learn to sleep on a toilet while you coninued to defecate while sleepng only interupted to vomiting into a basket; unable to eat or drink anything cold; damage to my liver and pancreas... and worst of all to lose your manhood as you must depend more and more on your family to care for you and do things that it was you used to do. So good luck to all. When a cop dies they have what's known as end of call. Dispatch calls your car number over all police radio frequences and after several minutes it is annouced there is no answer from officer. It is then announced this is his/her end of duty. Signifying the officers death. I spent 37 years in Law Enforcement and it will be an honor to have last call. Best of health to you all. Lou Swift doesn't answer he has reached end of tour.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    LOUSWIFT said:

    Promise broken

    Well had my last meeting with a doctor today. I was sent to an Oncologist today. Apparently the gaggle of Oncologist; radiologists; and just plain doctors met about me yesterday. It was decided it is time for me to die. No it wasn't OBamacares 15 person conference who is decides who has value enough to live or die this was a hospital group. Anyway the oncolgists informed me they could try chemo some more which could delay my death but likely make the quality of my life very bad with what remains. The Cyberknife radiogist types decided that the size about 3 1/2 cm located so close to my small intestine and bladder would result in serious damage to those organs. Apparently, this cyberknife isn't as accurate as it is advertized and radiation will miss the mark. They feel this would make my chronic diarreha so bad that I might need to be hospitalized for dehydration and the inability to stop at all. After the meeting I don't really know why my surgerical Oncologist insisted I go see him. I have told everyone I would never do chemo again. Anyway they now want me to go see a palliative doctor. I guess his job is to address my symptoms increasing pain levels; liver failure; toxicity; diarrehea and vomiting. They  wanted me to go see him as soon as possible, I asked why the rush. Didin't I have a year to a year and a hald left. Apparently, that depends on which direction my tumor decides to grow....into bowel; into the bladder; into pancreas; who knows and maybe cancer will travel to my lungs or brain. Of course my wife went to pieces because she thought I had many months left and it could actually be about three months with at least several weeks of me being so sick and toxic that I don't know what's going on and can't control bodily functions. Then both my surgerical oncologist and this new oncologist both wanted me to come back in a couple of months just to see how I'm doing. I must admit I got a little angry. I asked them why? I'm going to die there is nothing you can do about it unless they need some additional BMW payments. My sureon refused to take out my tumor becuase he felt I could bleed to death on the operating table. This wasn't his choice. He should have spoken to my wife who would have told him to proceed as she and I discussed. She had my health care power and I would have preferred dying on the operating table then to let cancer kill me a day at a time. There was no reason for me to see an oncolgist since evryone knew I would not do chemo ever again. So why come back and see them in a few months.? Okay the palliative doctor sure. He will keep increasing my medications for pain until I'm so spaced out I don't know what's going on and whatever symptoms I may develop. My final advise to ong timers and newbies here. Never ever never trust your doctors do what's right for you. In the eleven years I'm been fighting cancer and being destroyed by all the great doctors treatments recommendations I found I would have been so much better maybe not facing death without the help of incompetent non-caring arrogant know it all professionals. Remember your value is your a billing number and your replacement (another cancer victim) is waiting around the corner. I recall the great treatments which cause my hands and feet to swell so badly I could not waer shoes; lost the nails of my hands and feet; had to wear gloves to type on a key-board (my job) ; learn to sleep on a toilet while you coninued to defecate while sleepng only interupted to vomiting into a basket; unable to eat or drink anything cold; damage to my liver and pancreas... and worst of all to lose your manhood as you must depend more and more on your family to care for you and do things that it was you used to do. So good luck to all. When a cop dies they have what's known as end of call. Dispatch calls your car number over all police radio frequences and after several minutes it is annouced there is no answer from officer. It is then announced this is his/her end of duty. Signifying the officers death. I spent 37 years in Law Enforcement and it will be an honor to have last call. Best of health to you all. Lou Swift doesn't answer he has reached end of tour.

    Dear Lou

    I feel your anguish and weep for you.  I pray for you. May you be comforted. 

    I do so hpoe that you stay here with us on the forum. You are cared about deeply. 

    Cyber hugs, friend. 

    Sue 

  • maglets
    maglets Member Posts: 2,576 Member
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    Trubrit said:

    Dear Lou

    I feel your anguish and weep for you.  I pray for you. May you be comforted. 

    I do so hpoe that you stay here with us on the forum. You are cared about deeply. 

    Cyber hugs, friend. 

    Sue 

    Lou

    Dearest Lou.........your pain is so strong....it is very difficult to read your post and not be just overwhelmed....just the way you must be. I have very few words for you Lou.....i wish I could just sit beside you and hold your hand.

    so so hard.....I send you love

    maggie

  • Easyflip
    Easyflip Member Posts: 588 Member
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    Well written Lou

    Well, it is what it is. Here is my salute to you and a thank you for your service, not only as a police officer but also as a member of this board. Best of luck and best wishes as you end this tour and I believe begin another. May the docs ease your pain.

    Goodbye my friend.

    Easyflip/Richard