fairydrop
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Hi,
In my husbands case he was dx’d in Feb. 2005 and had treatments. He has been doing well off and on since then But no new growths.March he was told he was in remission, no cancer markers in his blood and all his levels were normal. Three weeks ago he started vomiting and we went to the hospital.
They ordered a ct because his blood values were through the roof and they found 6 new tumors some the size of walnuts.This is just him. Others on here have had very slow growth. I’m amazed John has lasted this long, his Drs. originally gave him 18 months and it’s been 31 so far.
Good luck,
CharleneThank you all so much for your kind words.
I really knew in my heart where I should be, it was just so hard when she started crying.
You know how Moms are.John is Ambers step-dad so she doesn’t have that bond since we’ve only been married for 10 years, (whoever said you can’t find love late in life was crazy lol).
I have already told her, so I will not change my mind. I have decided to send her a cell phone so we can still talk while she’s in labor. She’s going to have an epidural so that will keep her comfy enough to talk…I dread the bill though lol.
Thank you all so much, the guilt I have been having is gone. My place is with my husband who I love so very much and am hoping the chemo will give us time for us Both see our new grandson.
CharleneYep. Stents are a lifetime replacement plan. The Drs. gave my husband only 18 months but with stent replacement he’s been here for 33 months.
He has a metal stent now. Everytime they changed the plastic ones he would get an infection so we went with titanium.
They will get clogged after a while but they can go in and clean them out.
Good luck,
CharleneYour letter brought tears and a sense of understanding that I really needed. I am feeling totally alone and lost. There are just too many things happening all at once and I am feeling very overwhelmed.
I appreciate you all being here. You are the only ones who truely understand what we are going through.
I can’t thank you enough. When i was writing my letter I was having a severe anxiety attack. I felt as though i was on the verge of a mental breakdown, but since reading your reply I feel a bit better, not so frantic.
Thank you again,
CharleneI’m so depressed!!! John has a ct scan and a liver biopsy the 19th and I don’t know how i’m going to go through this again.
I’m so tired of all the Drs. and bills, having to work and take care of everything including my mother in-law who’s 87.
I’M ANGRY. Johns going to leave me. I’m going to be alone for the rest of my life and i hate it. I don’t want to be alone. My friend just lost her husband 2 years ago from the same disease and she’s still grieving so much. It’s not getting any bettet!!!!
I HATE THIS CRAP. I want to scream and hit some one.
I feel like I’m going to explode, I don’t want to do this anymore. I just want to get in bed and sleep but I can’t because all I have are nightmares. I’m on meds and still get no relief. I don’t know what to do.
CharleneJeffg,
I am so sorry this is happening to you. I’m happy you have a strong faith in God to see you through this horrible time.
My husband John has found his way back to God during this time. Maybe God knew that this was the only way to bring him back, I don’t know.
I look to my future and truely wonder if i will have one. The stress of his sickness and the fear of him being in pain again is really affecting me physically as well as mentally.
I can’t imagine what is going on in your or Johns head at this time.
I wish i knew his true feelings. he never wants to talk.
Please keep writing, I really want to know how you’re doing.
I’ll keep you posted on Johns progress.
God bless and keep us all,
CharleneHi again,
We went to the oncologist yesterday. Not real good news. Dr. said from prelininary tests the new tumors on Johns liver is from the BDC not mets from his previous colon cancer.
We have to have a ct scan,(to check for mets to his lungs and other places), their going to do a needle biopsy on the tumors to confirm what they’re from.
The Dr. said they have only one treatment that might work for a while.
I have a real bad feeling about this. I’m afraid of the biopsy itself since it’s very dangerous.
Johns birthday is next month on the 17th. I’m wondering if he’s going to be here for that.
I’m so depressed and distracted I can’t stay at work all day. I just want to be at home with John.
I’m worried about Johns Mom who is 87 and we’re taking care of her. She knows he may die but I think she’s telling herself he really isn’t. I’m afraid of losing both of them.
I’ll keep you all posted.
CharlenePatrice,
I know what you’re going through. God help us all through this terrible time. We meet the oncologist today. I want to talk to John about all the possible treatments available if the tests come back mets from his colon cancer but no luck. He says to just write it all down so I can question the Dr.
Well he’s going to have to face this today.
I love him so much but I just wish he was more proactive with his treatments.
If it was me I would be doing ANYTHING to try and find a cure for myself.
I realize he’s in a state of denial but how can I snap him out of it. if he keeps just trying to ignore it he’s going to die. I really believe you must have a fierceness in your approach to treatment
Well I have to go for now but i will update as soon as pssible after seeing the Dr.
Peace and Love to us all,
CharleneThank you so much for the words of understanding. I am doing just that…I check what type of mood he is in and go from there.
At first John didn’t want to talk at all but after a while I really pushed him to face facts.
Neither one of us had a will or anything except what we told each other so I was desperate to get him to do something so the Drs would know his wishes at the end.
His children (we’re remarried ) didn’t care as long as they were assured of getting their share of Johns things.
That hurt him SO BAD. It also showed him he had to take some responsibility for what was going to happen.
So we finally have that taken care of, now he’s more concerned about me being left behind than he is of his passing.
Can anyone tell me if their loved ones had mets from colon cancer to the liver and what type of treatment they had?
I’ve been reserching the types of chemo and radiation available because I can’t just sit here and wait till the 30th w/o doing anything.
Every suggestion or piece of info I can get is extremely welcome.
Thanks again,
charleneHi,
It’s Charlene again. It’s Tues. 21 and I’m trying desperatly trying to get John in to see his new Oncologist. He has an appt. on the 30th but he’s developed severe pain in his back.
When I asked his pain level he said it was a 5, that means it’s probably really a 7 or 8.
he hates to admit he has pain, he hates to admit the cancer is back. He’s still talking about getting a JOB!!!
I don’t know what to do or say to him. I try to tell him we have to find out what’s going on before he can think of anything like that.
I believe he’s so terrified about the mets to his liver that he’s trying to ignore everything going on.
Does anyone have any advice?
John won’t talk about any of this saying ” If I don’t think about the cancer , it’s not really there.”
I can’t keep going like this, he’s putting all decisions on me, doesn’t want to hear any news unless it good…so if I don’t say anything he’s got to know it’s bad.
I need some support here from you all who are going through this please.
Thanks,
CharleneBadfaith,
You need to get a new Dr. Where do you live? I’m in Ca. and here you can’t be fired due to illness. If he needs surgery just do it. This is nothing to let slide.
My Husband John has cholangiocarcinoma and had colon cancer at the same time. Our specialist said they we’re both completely seperate cancers.
He has mets to the liver from the colon cancer!!!!
He was dx’d originally in Feb. 2005. had photodynamic therapy, stent placement, internal radiation, was in hospice care from about Oct. 2006 tto Feb 2007 then discharged because they couldn’t find any cancer markers in his blood!!!
2 weeks ago he started throwing up, we had new blood tests done and his liver enzymes were off the chart.
This disease is totally unpredictable and totally deadly.
The reason I’m telling you all this is to let you know you can survive longer than they say but YOU have to be agressive with the Drs. Do your research. There are many different treatments, Radio Frequency Ablation (RFA), Cryoablation, Alcohol Ablation.
I don’t believe chemo works, just makes you sick.
Good luck to you both,
CharleneThanks to you both for your words of encouragment. We were doing so well for so long that I really believed God had cured John.
I have no faith anymore. He has gone from happy and actually planning our future in Feb, ( he was dischargeg from hospice when they took blood and couldn’t find any cancer markers at all !!!! ) to being sick within the last 2 weeks.
The new tumors are on both lobes of his liver. We’re going to see an oncologist the 30th of August.
I know from our specialist that John was only given 18 months so he has had more time than most people do but I’m just devestated finding out God didn’t heal him.
It’s not just me but John has just been knocked for a loop. He’s gone from looking forward to the future to DEEP depression. He looks at me with this yearning look, a look that seems to say ” Help me “. It is so lonesome knowing you are going to die, No one can ever really ease that hurt, that fear.
I love John so very much….
CharleneHi,
My name is Charlene and my Husband John has bdc, ( cholangiocarcinoma or commonly called Bile duct cancer. ) He was dx’d in Feb. 2005. They found the tumor only by doing an ERCP with tumor brushings. They did all the ct scan, mri the whole nine yards before doing the tumor brushing.
He was also given 18 months to live, He’s still here but is now going down hill due to metasteses to the liver and lymph nodes.
He had stent placement, photo dynamic therapy, internal radiation. That is what has kept him going for so long.
We saw Dr. Ian Renner in Los Angeles, Ca.
If your Dr. says there is no hope please give Renner a call. I send all my hope to you and your family. Stay upbeat as much as possible for your Dads sake.
DON’T GIVE UP!!! As long as there is life there is hope.
Charlene
