Bad day at the Onc. office
Comments
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I am Sorry
I am so sorry that you had such bad news. I wish there was something I could say or do that would ease your sorrow. You have had such a positive attitude and you need to continue that because it will help you get through. I will be praying that the scan goes well and that you can continue your treatments.
Kim0 -
Hi Patti....
... Docs don't know how long we have to live, only God knows, and there are peoople here who have been living longer then that who have the same thing, I have CC with mets to my liver, and fighting it, my onc won't even tell me my prognosis because she doesn't know anymore, since so many people are alive and living with it longer.
I am on Folfiri (Irinotecan) and Avastin, and though my hair thinned, I didn't lose it all, and I do my 12th treatment tomorrow. My onc told me I wouldn't lose it all, but I had long, waist-length hair, which I had my daughter cut shoulder-length, since I didn't like seeing the clumps of hair falling out, and I was getting scared as well, but it took alot of the weight off my hair, where it stopped falling out, but I did not lose all my hair, I have a pic in my expressions page that was taken just a few weeks ago, see for yourself
I don't know what the next step will be for me, I believe I am inoperable, but I can tell you that this chemo did shrink my tumors, and that's what I care about more, don't worry about the hair, it will be the least of your worries, and don't believe any prognosis, they are wrong most of the time.
Hope you feel better!
Hugsss!
~Donna0 -
Patti
My first visit to an oncologist last November and he told me I would never be resectable. I got myself a new oncologist. And guess what, I did get a liver resection 3 months later so what did he know. When I asked my current oncologist (at our first visit) what the prognosis was she said she didn't know. She couldn't predict how I would respond to treatments so she couldn't/wouldn't say. Your oncologist has no idea what your response will be to the Irinotecan. I have met some people online who had no response to FOLFOX but did great on FOLFIRI. We are all different with different body chemistry. Have faith that you will do well on the new chemo. To borrow from one of my favorite movies, The Polar Express, "BELIEVE!"
And don't worry about your hair. A friend of mine had hers fall out from FOLFOX but before that happened she had a wig made using her real hair as the example for the new wig. Her friends that have known her for years can't tell the difference.
I will keep you in my thoughts tomorrow as you get your scan.
Amy0 -
My heart aches with you
Patti,
I'm so sorry to hear your news. I'll be praying for the scan results and for your family. I know this must be so hard to hear.
God Bless,
Diane0 -
So Sorry Patti
What hard information to receive!
Please don't give up hope for the RFA or Liver Resection possibilities. I did have multiple mets (3-4) but they were able to do surgery. I had a recurrence in the liver and they did RFA. As others have said, just because one chemo cocktail doesn't work does not mean another won't.
My Oncologist originally ruled me out for liver resection because the mets were "multiple". He wanted me to do an Avastin trial instead. Fortunatley my colon surgeon referred me to a good liver surgeon. He evaluated it and decided I was a good candidate. Generally speaking... surgeons should be doing the evaluation and making the calls on surgery, not oncologists who may actually not be up-to-date. I honestly doubt I would be here today if we hadn't ignored my onc and gone to the liver surgeon. (I still have the same oncologist by the way... he is an excellent chemo clinician!)
Have you seen a good liver surgeon yet?
I'm sure this is all so ovewwhelming for you today. I hope I'm not adding more to your burden. I'll be thinking of you tomorrow as you have your scan.
Rob; in Van0 -
So sorry to hear you are
So sorry to hear you are having more pain, and you might have to change things up. But that could be for the best. If your treatment now isn't working, something else might be a lot better.
There are plenty of people with liver mets that do chemo to shrink them and then have radiation or resection. Don't count yourself out yet! You've got a beautiful family to fight for. Ignore your oncologist's reply to your question. He isn't God, so he doesn't know.0 -
My KS
Dear KS
I am so sorry that the onc gave you such a prognosis - my original onc and my liver surgeon both told me it was "highly inprobable that I would live to see Christmas 2008 - and that was 10.5 months ago - so take it as a grain of salt, but don't go "planning" the worst yet.
I think I told you one time...that we all need to look at our situations as a "lease on life." Rember when you lived in an apartment and you signed a 6-month or 1-year lease?
Well, that's what we are all doing with our Cancer - we just keep "signing that lease" to extend our lives and improvements are still coming all of the time.
I'm well into my 6th year now of this, and if I listened to what everyone had told me, then I never would have met you - and that would have saddened me.
From the time my treatment started to now, there have been many medicines and techniques, many of which I have used, that were not available at the beginning for me.
RFA and CyberKnife were 2 that come to mind right off the top - I've told you about these - me and Rob have both done them with success.
Please do not mail it in - just hang in there, go ahead and cry, because you did not receive the news you are hoping for TODAY and Today only - and Donna was right, no one can really tell us how long any of us have - in 2 years time, the possibilities will have changed.
I'm getting Robot surgery in a couple of days and I'm the FIRST ONE at my hospital for lung surgery to do that - this option was not even available to me even as little as 3 weeks ago, but now the APPROVAL has come down from the hospital to do it - and I'm going to do it, so that someone else, someone like you could benefit from this new surgical way of the future.
See what I mean? You've been through so much and I understand how in the early days of fighting cancer, things just get so scary - so I'm not going to sit here and minimize any of it for you - but as my KS, I am encouraging you to get your feelings out - and then keep on keeping on - you must, Patti.
My heart is breaking for you right now and I that I can do right now is hug you ((PATTI)) and try and be of some comfort, though I know words can seem hollow sometimes - but as I said the doctors told me I was dead and I'm still here and will continue to be here.
Hold my hand and we will walk through this latest chapter step by step - myself and everyone are here with you to share your sadness and try and lift you back up.
Today was a down day, but YOUR STORY is yet to be written and many, many chapters are left still.
I'll be around through Thursday evening (early) and have to get up at 3:30am on Friday and go and do my deal, so I'll be checking on you as soon as I can.
And Donna is right about the new chemo - I saw her picture and I could not even tell her hair had thinned, she looked so pretty - it will thin and grow back - if it falls out, it will grow back, but keeping you in the fight is the main thing.
I Love YOU, Patti...my (((KINDRED SPIRIT))) !!!!!!!!
-Craig0 -
Thank you all for lifting mySundanceh said:My KS
Dear KS
I am so sorry that the onc gave you such a prognosis - my original onc and my liver surgeon both told me it was "highly inprobable that I would live to see Christmas 2008 - and that was 10.5 months ago - so take it as a grain of salt, but don't go "planning" the worst yet.
I think I told you one time...that we all need to look at our situations as a "lease on life." Rember when you lived in an apartment and you signed a 6-month or 1-year lease?
Well, that's what we are all doing with our Cancer - we just keep "signing that lease" to extend our lives and improvements are still coming all of the time.
I'm well into my 6th year now of this, and if I listened to what everyone had told me, then I never would have met you - and that would have saddened me.
From the time my treatment started to now, there have been many medicines and techniques, many of which I have used, that were not available at the beginning for me.
RFA and CyberKnife were 2 that come to mind right off the top - I've told you about these - me and Rob have both done them with success.
Please do not mail it in - just hang in there, go ahead and cry, because you did not receive the news you are hoping for TODAY and Today only - and Donna was right, no one can really tell us how long any of us have - in 2 years time, the possibilities will have changed.
I'm getting Robot surgery in a couple of days and I'm the FIRST ONE at my hospital for lung surgery to do that - this option was not even available to me even as little as 3 weeks ago, but now the APPROVAL has come down from the hospital to do it - and I'm going to do it, so that someone else, someone like you could benefit from this new surgical way of the future.
See what I mean? You've been through so much and I understand how in the early days of fighting cancer, things just get so scary - so I'm not going to sit here and minimize any of it for you - but as my KS, I am encouraging you to get your feelings out - and then keep on keeping on - you must, Patti.
My heart is breaking for you right now and I that I can do right now is hug you ((PATTI)) and try and be of some comfort, though I know words can seem hollow sometimes - but as I said the doctors told me I was dead and I'm still here and will continue to be here.
Hold my hand and we will walk through this latest chapter step by step - myself and everyone are here with you to share your sadness and try and lift you back up.
Today was a down day, but YOUR STORY is yet to be written and many, many chapters are left still.
I'll be around through Thursday evening (early) and have to get up at 3:30am on Friday and go and do my deal, so I'll be checking on you as soon as I can.
And Donna is right about the new chemo - I saw her picture and I could not even tell her hair had thinned, she looked so pretty - it will thin and grow back - if it falls out, it will grow back, but keeping you in the fight is the main thing.
I Love YOU, Patti...my (((KINDRED SPIRIT))) !!!!!!!!
-Craig
Thank you all for lifting my spirits. I had to go and ask my Onc. the hard question I should have known what he would say. My husband was not with me today at my visit so I felt like now would be the time to ask. I always try to spare him from sadness because I need him to be strong too. He feels the sadness anyways. All of this is just so overwhelming to me and my whole family. I am a positive person most of the time but it sneaks in on me from time to time. I know hair isn't important but I know my kids are going to be so sad about it. I don't know for sure I will have to change treatments yet, I will know Friday after the results. Praying they are good and I can stay on Folfox..at least I know what to expect with this one. Craig, please don't worry about me or anyone else right now, you need to stay focused on yourself. I hesitated to post because I did not want to upset you. But of course you are on here to help as usual. I love you too Craig and all of you, God Bless you all, Patti0 -
Sorry
Patti,
I'm so sorry the doctor gave you such harsh news. As so many others have said, they can only guess at these things. You have every reason to believe you might live years past the time that doctor predicts. I'll be praying for you.
*hugs*
Gail0 -
I believe in Miracles
Dear One,
I am so sorry that you have to go thru this. I will be praying for you. Please listen to all the wonderful people here who are encouraging you. It is so scarey to have to wait and see what tests say. Our imagination can go wild. I know you will contine to fight and have faith. I believe in miracles!!!!
Blessings to you,
Debbie (gramma)0 -
Dear Patti
Dear Patti,
I am "holding you in the light" as our new friend Adrian has said. I am sorry your news today was so hard. I will be thinking of you this week. You have a beautiful family and you are a strong woman.
Aloha,
Kathleen0 -
Hey Patti
I know what you're
Hey Patti
I know what you're going through - we had a pretty tough day too - Hopefully it boosts your spirits, like mine, to know that people on here really understand and empathize and will support you all the way. Doctors, know a lot, but they don't know it all and don't take their word for anything you don't believe on a gut level. Trust your instincts and keep going -
Like Kathleen said, I'll be holding you in the light (it's an old Quaker expression - tho I'm a middle-aged Quaker ;-)).
Adrian0 -
LIVEGROWAceSFO said:Hey Patti
I know what you're
Hey Patti
I know what you're going through - we had a pretty tough day too - Hopefully it boosts your spirits, like mine, to know that people on here really understand and empathize and will support you all the way. Doctors, know a lot, but they don't know it all and don't take their word for anything you don't believe on a gut level. Trust your instincts and keep going -
Like Kathleen said, I'll be holding you in the light (it's an old Quaker expression - tho I'm a middle-aged Quaker ;-)).
Adrian
Patti.
I read you post last night and it's kept me up trying to think of what to say, Doc sould not give time lines before all the facts are in, Wait and see what the scans say and then go see a Liver surg, Go find the best obe you can, Emory is close by you, Go see Doc Kooby.
You will live for as long as you beleive you will live,
I have a very simular Dx to you and we are the same age, I know this cancer is bad, (it;s already put in the hospital,)
But i have ti think that the Docs donot know everything and people live a long time with cancer,
My Grandmother had every cancer known to man and she lived to 70,
Fight with all you have change everything negitive to a positive and Live, Laugh, Grow to the very end,
You are young and strong, you will beat this.
We believe in you!!!
Love you
Winney0 -
PattiSonia32 said:big hugs patti
sending positive thoughts & prayers your way as you know you are not alone and we are all with you x
I am so sorry prayers are going to you and your family. I hope you get better news on friday.
michelle0 -
Hi Patti,it is just a bad
Hi Patti,it is just a bad day,you should leave it behind and move on.You know,some numbers that doctors give you are not always the newest ones,plus statistics are just something that if it doesn't happen to you,then you are 100% out of it.I think your treatment has been going well,from last scan your tumor already shrank a lot,right?So if you are a candidate for surgery or RFA,it is always a good thing.You know,Craig did RFA and his liver has been very clear for a couple of years.When everything is cleared up,you are going to be NED.I am sure you know that many people here on the board are survivors for over 10 years and even more.So this is just venting and you move on,things will get better with time.Take care.Hugsss.0 -
HI Patti, I am sending HUgsittapp said:Thank you all for lifting my
Thank you all for lifting my spirits. I had to go and ask my Onc. the hard question I should have known what he would say. My husband was not with me today at my visit so I felt like now would be the time to ask. I always try to spare him from sadness because I need him to be strong too. He feels the sadness anyways. All of this is just so overwhelming to me and my whole family. I am a positive person most of the time but it sneaks in on me from time to time. I know hair isn't important but I know my kids are going to be so sad about it. I don't know for sure I will have to change treatments yet, I will know Friday after the results. Praying they are good and I can stay on Folfox..at least I know what to expect with this one. Craig, please don't worry about me or anyone else right now, you need to stay focused on yourself. I hesitated to post because I did not want to upset you. But of course you are on here to help as usual. I love you too Craig and all of you, God Bless you all, Patti
HI Patti, I am sending HUgs and positive energy to you. Take you time and get over this sadness and then be ready to fight on. I'll be thinking of youon friday and hoping for good results. May you gain strength and feel the love from all you friends here. Petrina0 -
I am new to this board, but
I am new to this board, but I read your post & felt I needed to respond. I too have colon cancer & have mets to my liver. I have personal experience with people who have had long survivorship with bad prognosises(sp?)& I wanted to share with you. One friend was diagnosed at 30 with ovarian cancer which had spread to her heart. She was given 3 months to live; 20 years later she was at our house for dinner a few weeks ago & has had no recurrences. Her advice has been to never look at statistics. Another woman I spoke to had stage IV colon cancer 15 years ago, with mets to her liver. She had colon surgery, was given chemo & radiation for her liver & was told that would give her an extra year of life. Here she is all these years later! She uses yoga & meditation & also said she believes in journalling before bed, recounting all poitives from the day. Another very inspiring story is that of the 86 year old woman who is in The Colon Club calendar this year. She has survived 60+ years after colon surgery at age 26. You can hear her story if you go to the Colon Club website. She said that she didn't know that she had colon cancer until years after she had her surgery (her doctor & husband told her it was gall bladder!) Her doctor had told her husband that she had 3 years to live after her surgery. She said that people who know they have cancer have to use optimism; in her case she was ignorant of the real story. I have read & heard of many other inspiring stories of survival, including many on this board. I want to hold all these stories in my head & heart. I don't think anyone can tell us how long we have to live; statistics don't take many factors into account such as age, general health, support system, etc. Keep believing & enjoying your family, friends and the beauty the world has to offer.0
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