I am losing hope....... please help me if you can
You all know I have been planning to go to MD Anderson Cancer Center for a while now. Well, I am here. Went today for some testing and met with a few doctors. The end result was not good. They told me no surgery on liver or lungs...EVER. My cancer is in bloodstream and they need to kill it (control it)in all 3 places NOW with chemo. They said that will always be my battle. I will never be cured...duh.... and they said even if they did surgery it would more than likely always come back so why bother. I am crushed. This was my big hope. I don't know what to do now. Where do you go when you are suppose to be at one of the best hospitals in the us??? I am so bummed. They said friday... after more test results came back.... they would discuss how much time I had..... even though those averages usually aren't right. What???? The only trials they have is for those that chemo is not working and with only 1 organ involvement. I am so screwed.... Oh my God...What the heck am I gonna do.....????
Jennie
Comments
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I'm so sorry
I just don't know what to say. I know you are crushed but please don't give up hope. You just need to follow their protocol and keep fighting. I know that it is easier said than done and I feel for you. Please know that you are in my thoughts and prayers and I continue to believe that you need to fight.
Kim0 -
Hang onAnnabelle41415 said:I'm so sorry
I just don't know what to say. I know you are crushed but please don't give up hope. You just need to follow their protocol and keep fighting. I know that it is easier said than done and I feel for you. Please know that you are in my thoughts and prayers and I continue to believe that you need to fight.
Kim
Jennie,
I am so very sorry to hear your news...Have you gone for a second opinion??? I think you should because you never know what another hospital and other doctors might know....You have nothing to loose but your time right???
Talk to your family and friends and your clergy (whoever understands what is happening with you) just to let somethings go from your head because I know your head is spinning..Talk about your feelings with them it does releive some ...
Keep posting it feels good to know that you have many people who can share their lives with you too..
I wish you the best and NEVER give into the monster!!! Keep fighting
Julie0 -
Jennie!Julie 44 said:Hang on
Jennie,
I am so very sorry to hear your news...Have you gone for a second opinion??? I think you should because you never know what another hospital and other doctors might know....You have nothing to loose but your time right???
Talk to your family and friends and your clergy (whoever understands what is happening with you) just to let somethings go from your head because I know your head is spinning..Talk about your feelings with them it does releive some ...
Keep posting it feels good to know that you have many people who can share their lives with you too..
I wish you the best and NEVER give into the monster!!! Keep fighting
Julie
Do not lose the faith and hope, there is always that! doctors are human, and I don't believe anyone can give you a timeline on when...Just keep going for more opinions, find someone who wants to TRY, I hate hearing this news for you, and believe to just keep living enjoying what you're doing, it's hard to always be happy, but it's a boost for the immune system..laughter also, please just think positive thoughts, I will be sending my prayers and thoughts for you, and believe ALOT of people have been in the same position as you, and are still living for a long time!
Hugssss~
~Donna0 -
ThanksShayenne said:Jennie!
Do not lose the faith and hope, there is always that! doctors are human, and I don't believe anyone can give you a timeline on when...Just keep going for more opinions, find someone who wants to TRY, I hate hearing this news for you, and believe to just keep living enjoying what you're doing, it's hard to always be happy, but it's a boost for the immune system..laughter also, please just think positive thoughts, I will be sending my prayers and thoughts for you, and believe ALOT of people have been in the same position as you, and are still living for a long time!
Hugssss~
~Donna
Julie....that was my second opinion. The first one I got from my hometown onc. They both agreed about the surgery. I was hoping MDA would see it different and cut the crap out. NO DEAL! Donna, they said they would give me a time line on how long they thought the chemo would continue to work for me. They seemed grim. I was just sooooooooooooooo excited about coming here.... I was so sure this was the answers to my prayers.... NOT....... oh well...what happens...happens0 -
I....idlehunters said:Thanks
Julie....that was my second opinion. The first one I got from my hometown onc. They both agreed about the surgery. I was hoping MDA would see it different and cut the crap out. NO DEAL! Donna, they said they would give me a time line on how long they thought the chemo would continue to work for me. They seemed grim. I was just sooooooooooooooo excited about coming here.... I was so sure this was the answers to my prayers.... NOT....... oh well...what happens...happens
...Probably would have gone to Sloan-Kettering or Vanderbilt too...you never know, there are doctors who will try more for a patient, I thought you were wanting a time on how you had to live LOL...But no one really knows that, and I would hate for people to be focused on that, where it's all they were thinking about...you sound like you're doing great, the mind is very powerful over how the body heals as well, so just KNOW that you going to get through this, you believe in miracles, you believe you can do this! be positive, you'll be in my thoughts and prayers!
Hugssss!
~Donna0 -
you never knowidlehunters said:Thanks
Julie....that was my second opinion. The first one I got from my hometown onc. They both agreed about the surgery. I was hoping MDA would see it different and cut the crap out. NO DEAL! Donna, they said they would give me a time line on how long they thought the chemo would continue to work for me. They seemed grim. I was just sooooooooooooooo excited about coming here.... I was so sure this was the answers to my prayers.... NOT....... oh well...what happens...happens
I was told I wasn't a surgical candidate. All the doctors agreed I would need a miraculous response to chemo. Well I had a semi-miraculous response and I'm now 5 surgeries into what feels like a lifetime of them. If the chemo works you will be able to reevaluate your treatment. They've reevaluated mine half a dozen times. Plus, there are half a dozen new things coming down the line that are very promising. All the Dr needs to do is keep you alive until the next best thing comes along. Cheer up, take your treatment and live the wy you want. You'll be surprised at how strong you can be.0 -
Exactly right John.....snommintj said:you never know
I was told I wasn't a surgical candidate. All the doctors agreed I would need a miraculous response to chemo. Well I had a semi-miraculous response and I'm now 5 surgeries into what feels like a lifetime of them. If the chemo works you will be able to reevaluate your treatment. They've reevaluated mine half a dozen times. Plus, there are half a dozen new things coming down the line that are very promising. All the Dr needs to do is keep you alive until the next best thing comes along. Cheer up, take your treatment and live the wy you want. You'll be surprised at how strong you can be.
He is shooting you straight.....You might try and speak with Vanderbilt about your situation...You have nothing to lose...Go to the Vanderbilt-Ingram website and find the Drs there and there is a lot in there that will give you hope ..there are also clinical trials and such...Just take amcp's story about her husband and they had no hope , now its sounds as if hes gonna be ok.....Im gonna give you the number to Dr Alan Herlines office...He is the Biomedical engineer and colorectal specialist there at Vandy...It won't hurt anything to call them...You will probably speak with a lady or ask for her. Her name is Diane...she is a wonderful person...1-615-343-4612.....Good Luck Hun.......0 -
Never Lose Hope!
I'm so sorry that you have to deal with this, but I don't believe in statistics. Thru symposiums that I have been to, I have met many people who should not be here today and they are. I met someone who was only 26 yrs old when she was diagnosed, and was told she only had 6 months to live. Well after many surgeries and much chemo, she is still here, and she is NED for over 5 yrs now.She just recantly got married and is living life to the fullest.
Alot of this is all trial and error and a guessing game.Faith is a wonderful thing, and miracles do happen. Chemo can do strange things and it's possible that it can keep you going for years yet, and you never know what else is in the works as far as trials.Having cancer makes ua all fighters, you just have to keep fighting!
You're in my prayers.
Wendy0 -
I just....shoppergal said:Never Lose Hope!
I'm so sorry that you have to deal with this, but I don't believe in statistics. Thru symposiums that I have been to, I have met many people who should not be here today and they are. I met someone who was only 26 yrs old when she was diagnosed, and was told she only had 6 months to live. Well after many surgeries and much chemo, she is still here, and she is NED for over 5 yrs now.She just recantly got married and is living life to the fullest.
Alot of this is all trial and error and a guessing game.Faith is a wonderful thing, and miracles do happen. Chemo can do strange things and it's possible that it can keep you going for years yet, and you never know what else is in the works as far as trials.Having cancer makes ua all fighters, you just have to keep fighting!
You're in my prayers.
Wendy
....Someone on the Colon Club about a man who is still here living with colon cancer for 30 years!!!! that's the longest I heard it, I wish I could find that post, but miracles do happen, and think positively, no one can stamp a date when any of us are going...I could be murdered, run over by a truck, shot at a drive-by, heart attack---this disease may not be the things that kills anyone, I don't believe in statistics either. Other things in life happen to everyone, I just won't let this disease be the end of me, I'd rather die trying to have sex finally after not having it for awhile, now that would suck, wouldn't it? Or even a stroke while cbanging my colostomy bag!!! now that would be scary too for the one who finds thst scene lol...
Stay off the internet, surprises are one of them~I almost died from a perforated colon a couple months ago, and I'm here, the colostomy saved me life
But always keep the hope, and take it one day at a time 0 -
Jennie
Jennie,
CRUD! I really HATE bad news.
What everyone else said. Me too. You can do this. Chemo is still working, right? That's great news! ASCO just came out with their new trial results and there are a couple VERY interesting drugs in the pipeline for stage IV's.
Don't let them give you a prognosis. They will be wrong. Like I told my liver surgeon, "You might know what you're talking about, but you don't know WHO you are talking about!" That was in January and I've already proven him wrong. I LOVE it! The genetic oncologist is now doing more testing so they can figure out why my current chemo (I'm on a drug for anal canzer) is working and standard treatments didn't. They want to start a clinical study based on my case.
"Where do you go when you are suppose to be at one of the best hospitals in the us???" You go somewhere else. You keep looking. And hoping.
Remember - go for 5 years. In 5 years the new drugs currently in the pipeline will get you 5 more and 10 will get you 20 every time!!
I sent a PM
Kimby0 -
Jennie
There are many of us
Jennie
There are many of us who have metastatic cancer, which is the onc word for "in our bloodstream" cancer, and yes chemo is the plan the docs recommend now to keep it under control. That doesn't mean you are going to die, now, soon or ever,of the cancer.Please don't think about those out of date statistics. There are many folks who have "it" in their bloodstream who are still alive 5 and 10 years later and some who don't even have any evidence of disease after being sent home to die. Please don't look on this as a death sentence. It is disappointing not to be able to whack it out surgically and know it is gone but actually cancer cells are in many bodies and not even known about. At least you know you have them and can do whatever you can to keep them under control...it is called "living with cancer" Check out the book, film, and website by Kris Carr...."crazy sexy cancer tips" She is the poster child for someone living with metestatic disease. These days we don't see it as an all or nothing situation but living with it is a common scenario. Don't give up. Consider the chemo, read the posts about juicing, read the book Life Over Cancer, Patrick Quinilan's book, Larry Dossey's book...........most of all FIGHT. We're doing it, you can too. We're in this together and we're rooting for you.0 -
don't give up!
Hi Jennie, I am sorry to hear about your latest info set back, but want you to know you can still do just fine! I am stage 4, colon cancer with mets to both lungs. I have not had any tumors on my liver, but did have it on my ovaries. Prior to my resection and complete hystr. the scans and tests showed it on my lungs. I completed 12 rounds of treatment, with folfox - 5 fu and the tumors went away quite quickly. My dr. said I should take a break as the treatment was pretty hard for me. During the 3 months with no treatment the tumors came back on both lungs. I was crushed. My dr. said he should have realized it was not going to "go away", but was in my whole system and could resurface at anytime. I began treatment with Avastin and irianotecan (sorry about the spelling) I have been on it since Jan. and once again the tumors are reducing. I have basically no side affects from these meds. I have infusion every other week. My dr. says our goal is to hold it back! I can do this and so can you! So what we get treatment for years, we are living those years. I don't care what they call my survival as long as I can still live my life! Stay tough- we can do it! let me know if you want to talk. Jean0 -
Jennie darlin'kimby said:Jennie
Jennie,
CRUD! I really HATE bad news.
What everyone else said. Me too. You can do this. Chemo is still working, right? That's great news! ASCO just came out with their new trial results and there are a couple VERY interesting drugs in the pipeline for stage IV's.
Don't let them give you a prognosis. They will be wrong. Like I told my liver surgeon, "You might know what you're talking about, but you don't know WHO you are talking about!" That was in January and I've already proven him wrong. I LOVE it! The genetic oncologist is now doing more testing so they can figure out why my current chemo (I'm on a drug for anal canzer) is working and standard treatments didn't. They want to start a clinical study based on my case.
"Where do you go when you are suppose to be at one of the best hospitals in the us???" You go somewhere else. You keep looking. And hoping.
Remember - go for 5 years. In 5 years the new drugs currently in the pipeline will get you 5 more and 10 will get you 20 every time!!
I sent a PM
Kimby
I know this is a blow. But take what Kimby says (Like I told my liver surgeon, "You might know what you're talking about, but you don't know WHO you are talking about!") and adopt it! Your attitude is prime right now. You CAN do this. The chemo will give you options. The doctors are just doing their job, but you are NOT a statistic.
Hang in there sweetie. We have your back. Grab onto Buzzard's rope and we will pull you through.
Many {{{{{{{{{hugs}}}}}}}}}} Vicki0 -
GIVE UP.....WHAT!
John and Buzzard, I love you........both of you are such
inspirations and always say the right things at the right
time. I would guess that even at M.D. Anderson they have
doctors who aren't great at the simple thing of communication.....
and can surprise themselves that their prognosis was not
right.....so don't give up.....get on chemo and see how
it goes just like John said.....one of the big challenges
is keeping yourself motivated and positive......do everything
you can to keep your spirits up.....try meditation, prayer,
yoga, tai chi, find a support group, work on goals for yourself
such as improving your diet and don't forget to exercise....
there are exercises that you can do even when you don't feel
like doing anything but sitting in a chair or lying in bed.
Will keep you in my thoughts and prayers.
Huggs,
Barbara0 -
Shayenne, I so agree withShayenne said:Jennie!
Do not lose the faith and hope, there is always that! doctors are human, and I don't believe anyone can give you a timeline on when...Just keep going for more opinions, find someone who wants to TRY, I hate hearing this news for you, and believe to just keep living enjoying what you're doing, it's hard to always be happy, but it's a boost for the immune system..laughter also, please just think positive thoughts, I will be sending my prayers and thoughts for you, and believe ALOT of people have been in the same position as you, and are still living for a long time!
Hugssss~
~Donna
Shayenne, I so agree with you. A Dr willing to TRY!!!
Anne0 -
We are all pulling for you!
Hi Jennie,
We are all pulling for you! Please feel our support and prayers. Hang in there.
There is one call you must make today. Call back your power. Nothing is more important than your belief you can beat this. Stay strong and fight.
Your Survivors Network friends are with you in spirit.0 -
Hope
Jennie
So sorry to hear about what MD Anderson said. Do NOT give up there is always hope!!!! Get another opinion like others suggested at Vanderbilt or Sloan Kettering. Or do the chemo...after it shrinks the tumors thing will change...you could become a candidate for surgery. I think all cancer is in the bloodstream when it has mets to other organs. Just think positive...I am here for you. You are in my thoughts and prayers. They are not sure that Frank's cancer won't come back but buying time is the important thing. Buy time until something new comes available..each day is precious and we are only given today. We have seen the change after chemo...so remember there is HOPE. Never give up...continue to fight..something that might help could just be around the corner. Chemo can change ...shrink...or even get rid of tumors. REMEMBER ALWAYS HOPE.
Sending you prayers,
Hugs,
Anna0 -
DO NOT GIVE IN TO THIS CANCER!!amcp said:Hope
Jennie
So sorry to hear about what MD Anderson said. Do NOT give up there is always hope!!!! Get another opinion like others suggested at Vanderbilt or Sloan Kettering. Or do the chemo...after it shrinks the tumors thing will change...you could become a candidate for surgery. I think all cancer is in the bloodstream when it has mets to other organs. Just think positive...I am here for you. You are in my thoughts and prayers. They are not sure that Frank's cancer won't come back but buying time is the important thing. Buy time until something new comes available..each day is precious and we are only given today. We have seen the change after chemo...so remember there is HOPE. Never give up...continue to fight..something that might help could just be around the corner. Chemo can change ...shrink...or even get rid of tumors. REMEMBER ALWAYS HOPE.
Sending you prayers,
Hugs,
Anna
You are at a critcl time where you HAVE to stay positive and think this cancer just messed with the wrong person. Research ALL you options. Start with a lifestyle/diet change...reduce stress, look for your positives everyday, laugh and just realize you am too strong for this. Meditate, do yoga, anything to calm your mind. If you get down (and you will) for too long your immune system will lower. You need it to work WITH the chemo to fight this off.
I went to MD Anderson and I loved them but everyone is different. Get another opinion.
If you get down too long think about an antidepressant to get you through. You have to keep your fighting spirit up.0 -
First of all Breathe
Dont give up hope, those doctors dont know when its your time, only your higher power does. Have faith in that. I will pray for you if you dont mind. I feel your pain and hate that you are suffering so much, you are not alone here we are all here for you. Please let us know if we can do anything for you.
God Bless you
Beth0
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