To all my Stage 4 survivors lets say over 7 years do you wonder if the chemo will stop working and the usual line from the medical profession is we ran out of options go home and enjoy the rest of your life. Stage IV cancer I believe in the end takes no prisoners. Its almost like we are given the constant “get out of jail card” however, there are some of you with less time then 8 plus years that have already been told there is nothing else “we” can do. Why does this Country suck out every dollar they can to give chemotherapy that sooner or later will not work for us Stage Iv’s. How can a cell of cancer be so smart that it rejects all that you give it in time. Chemo was and never is the answer maybe for Stage 1-3 but not for 4 because we have cells where ever ready to pop out I respect highly those that have gone into Hospice but sometimes that is not the final chapter of our lives. I have heard of the unthinkable that the Hospice patient failed their 6 month program in a good way and lived for many years. I am back again for the umptenth time using now folfori and the Onc doesnt paint a pretty picture regarding I have taken the entire gammet of chemo’s. So what do you do. I am not going to lay around and die on someones word. Only God the supreme can make those decisions however, it does strike a note deep in my soul will I be one that chemo doesnt work for anymore.I believe being around happy positive people is contagiously great for us. However, if you are not a Stage IV patient/ survivor you can only surmize what we go through and what are chances of survival are compared to a 1-3.
I am going for 9 years surviving with this disease this August God willing. However, I still cant make plans more the 2-3 weeks out because of this rancid disease. There is no pretend in this arena of fight till you die. Do we all scramble at a certain time when chemo doesnt work – yes we do. I for one dont think the human spirit, heart and mind want to wait around to pass but so many times we dont have choices because of lack of insurance or new forms of chemo havent come out yet. The reality to all my friends here that are fighting the good fight is that I am afraid to die, not because of the unknown but for the reason of leaving my lovely wife behind. Nobody promised us a rose garden as I recall, and if you dont have your health no amount of money will bring it back only God can perform miracles not modern medicine. Newbies please dont be fooled in a lull that all of these cases turn out primrose pretty because they dont. Just know that you have one life to live with or without cancer and you best be having constant mental parties and non-superficial people around you. Family and friends from the beginning to the end will be there to love you and comfort you. Cancer was never meant or will be my final destination but again there are times like some of you that I read all options have failed. So the question or discussion is does a Stage IV really have a chance to live a productive life for many years. If you show me a IV that has lived with the disease lets say 2 decades that is impressive and I strive for that. Any survival at any level 1-3 is tremendous but believe me we the IV’d are in our own group and its a damn group I wish I could break the chains that bound me. Hopefully this wasnt a rant, not meant to be. I havent been on for ever and a day as I want to know which I do now there is more to my life then cancer. We always hear we are not defined by “cancer” but there is a registry somewhere that defines that we have cancer. God Bless and any responses from IV’s would be appreciated you know who you are.
Shuey, 4 year Stage 4 fighter…Hey MC,No one but other stage ivs can understand the “Time Sensitivity” we feel and It sux that all us Stage IVs have that door marked “The Abysys” directly behind us. Its the biggest struggle I deal with and the way I deal with it now is by chosing to ignore it. So I choose not to cope with it, maybe not the best way but its the best way for me now. You are asking the one question I think many of us avoid What Now? And I hope I have the strength to make the best choice for my family and I at that time. Being lucky to be NED now it is easy to say I will fight to the end. BUT to what extent? I hope that I stay NED but facts are it will probably come back and when it does I will do whatever I can to make it go away again but what if it doesn’t? Do I want to be hooked up to a Chemo Bag at the end? I cant honestly answer that question now. Thank You and God Bless MC
thanks for your heart felt message. There is no way to gauge this and that is what sucks being a IV. Why was I NED for 3 yrs straight and popped out years ago, only the Master knows.
I know for a fact that somewhere on this great planet there are many awaiting the next miracle or just been told that’s all we can do for you. Funny all those millions of dollars in so called “research and development” nothing seems to change. It reminds me of the old Jerry Lewis telethons – we are getting closer to understanding the gene that creates MD enough about understanding do something.
I guess I have to much time on my hands and I run different scenarios of my life and the word “terminal” which to me means termination eventually. Shue you might ask yourself why do I have a beef now over 8 plus years of living terminal. I cant answer that either its just like time stands still until the next blood prick, test, chemo. Congrats my brother on NED the longer you are on NED the better for all around. The abyss sucks and no mind altering legal medications can make one snap out of it. I wonder how my Buddhist friend Sue is doing.. Buddha had great knowledge and I always remembered what we have here is just for here. We must shed our possessions to truly understand life. Well I can go so far but not crazy far with Buddha writings. Thank you again Shue, have a cigar and a highball and call me in the morning lol. God Bless you my friend.
On 5FU, lukoverden(s), irotecan on a two week regiment then off one week. Zaltrap trying to get approved but in my minimal wisdom isn’t that a knock off of Avastin?
2/4 out patient surgery don’t want to be too explicit here because I don’t want to scare newbies. Hint. the surgery is where you “sit” daily that part of your body. Lets pray no cancer there I hate all of this and darn it 10 steps forward 20 Disclaimer to newbies….. These things don’t happen to everyone please don’t let the reality of others scare you. Its a fact of life that we fight with the whole body not just the mine. Never ever let your mind give up and wait for the body to follow to the land yonder (heaven). Peace Jeannie, thanks for your concerns and hopefully I will e back but watching from the side lines. My comments I don’t believe are valuable with new groups coming in as these are all my experiences and the last thing I want to do is scare someone new to the site. God Bless you Jeannie and your family. Peace.
Deb…stage 4 fighter…
MC, your posting hit home to me- the questions that lurk in our minds but afraid to speak of. Why do all this chemo if there is no hope of a cure? Maybe it is in the hope that during our chemo treating there will be a cure, perhaps to have more good days then bad days. I have only been treating a short time but I hate the unknown, will today be it, tomorrow, next week, month, year it is so difficult. I can’t say any of us know. I know people like you and the other long term survivors give me hope to carry on, go through the chemo bad days and cherish the good ones. Warm wishes and hugs to you and yours.
Deb, my message is not one to scare anyone on this site or anyone that I talk to. Its just the bottom line saying this kind, “this is not a rose garden”. Possibly more times then we want to realize the outcome is final and we Kiss God’s Face. I as a few on here have longevity. I cant talk and say how they feel but when we are together as a team it builds strength and positive reflexing in my mind. I saw something on you tube that inspired me. It was called Miracle Mike which is what my Onc before he left for another job called me. This gentlemen was terminal either with 4 cancers or 1 I cant remember for 4 times and says surrounding ones self with happy positive not said or people that don’t know what to say when you tell them you have cancer is “you look good” has been his survival manta.I take nothing away from any Stages of CRC however, bottom line 1-3 the last time I checked was not terminal, 4 is obv. I had chem today then had to see the Proctologist, not TMI on here for you. I have out patient surgery for an ulcer in a particular area where when you sit it hurts, get the drift lol. It is 2/4. The mind or least my mind says outwardly lets wait till it is removed and under the microscope, my mind mind says hmmmmmmmmmm all Pet Scans etc, show no new metabolic activity except the 3 lesions in my liver. What could this be. The words I want to hear its from Chemo so lets pray that is it. Stay on the path my friend, be vigilant, don’t sit too long on good news as cancer is a sleeping giant in my opinion. The cure my friend Deb is in our minds but mainly God. Chemo reduces, stops or makes the cancer cells disappear to appear another day, month or year. I am proud of my 8 plus years of surviving a terminal disease, so see Deb it is called terminal however, the quality of life you life is the most important. I babble too much so I apologize. Thank you for your message and your inner thoughts. We all have them and the last one in my opinion will answer them is God. Modern medicine will break a person of any and all moneys. I have the VA as my savior. I will never leave my wife of 32 years destine (broke) trying to save me for another week. That’s my reality, others don’t agree and that is fine. We don’t have rose shades on and everything smells like roses. I am doing my best to bring my “roses” = my life to a good place everyday that I am granted time on this earth. God Bless you Deb and your family. Enjoy life but always keep it real. :).
Randy (me), 27 year Stage 3 survivor…all of you Stage 4 fighters are my HEROES.
Thank you Randy coming from you means a lot. At your stage way back it seems in chemo infancy you triumphed heck 27-28 years survivor is off of the charts and the Dr.s are still scratching their head over your special longevity. We never asked for CRC and I never asked for Stage IV. I think my reason for being is first God, my wife and compliant with all tests, treatments, whatnot. You my friend at any stage are all our heros. You made the possible impossible possible and I know you are a very proud person that you have this longevity. God Bless you and your family, your son that was in the military, thank him for his service as well.
Birdnut, 7 year Stage 4 survivor….
Keep fighting! We never who will make it and who won’t but if we give up then we’ll never know if we could have been “the one” to break thru and save us all. a 6 yr battle only 1 yr NED but I refuse to give up until God comes for me.
Birdnut I hear you loud and clear. My fight is far from over. First, congrats on 6 years and 1 year NED.I have almost 8 plus in and out of NED but the last few years out of NED. The reality or at least what the Onc says is one day (only god knows) chemo wont be able to gobble up the cells anymore because of the immunity hence the word terminal. Its always been the real deal and for God’s reason I am still here. I just sit back at times and know that at least my clock is running maybe not fast or running down but its running to a specific direction. With cancer comes all the extras at least for me embolism on the lung, bloodclots in both ankles, and now ulcer where the sun don’t shine. That will be taken care of 2/4 and sent to pathology for review. All Pets indicate no new metabolic activity just a focus on the sun don’t shine part. Its the cards we have been dealt. I have friends on here that are 7,8,9 yr survivors just like me. We question not just trot to our appointments diligently and take chemo if that is on our menu with tests and go back to living what I call the “new life”. Soon as I was told I had cancer I had a profound change in my life, relationship with my wife (good) and people in life. So my friend I for one will never quit even if it gets to a hopeless position because the word Terminal doesn’t say it will happen today or tomorrow it will only be when God says its time to come home. Thanks for your input sir. have a great weekend with your family.