1

(4 replies, posted in Introductions!)

Paula,
I'm so sorry to hear what you are going through. My dad died a week ago at the age of 81 and his final stages of battling this disease were very similar to what you've described. I can't offer much wisdom other than to say doing all you can to make your dad comfortable is the best you can achieve. Your father sounds quite lucid and part of his concerns over morphine may be related to him losing that mental awareness. With his body failing I can't slight him for wanting to keep his mind intact and focused.

For what it's worth, my dad was a fighter all his life, until one day not too long ago he told me that he wanted to die. That was hard to hear but I admired his willingness to look death in the eye and say "I'm ready." I understand what you are feeling but in no way is your dad simply giving up. On the contrary. He is a brave man facing the most difficult step of his life and acceptance is an important part of the process. There is a time and place when the battle will be over. For some the fight will wage on for years. For others the time has come. Your father's ability to recognize what lies ahead is a life lesson he is giving to you.

He is lucky to have you by his side through this and, as you see this through to the end with him, he'll depart this life knowing he succeeded in raising a fine daughter of whom he is no doubt very, very proud.

Tiffany,
I understand what you are feeling. My dad died on Wednesday and, towards the end, his decline became steeper and things seemed to happen faster than we could grasp. But rest assured, pain can be controlled and I do not believe he suffered in the end. To us, his comfort was paramount. In his final days we could see him slipping away until one morning, he breathed his last breath. You needn't be afraid.  This is the natural process for all living things. Just take comfort in knowing your mother is very proud of you right now, and she always will be. It sounds like you are doing everything right.

3

(61 replies, posted in Introductions!)

Thanks so much for your kind words. It's never easy losing a loved one, but knowing my dad is no longer suffering and that we put up as good of a fight as possible makes it a little easier to bear. As we sat by his hospital bed shortly after he had died, there was this strange empty moment in time. After the months of coordinating, orchestrating, scheduling, and researching, it suddenly hit me: It's over. There's nothing for me to do now but let him rest.

The last 6 months have been tough and sad, frustrating and distressing, but there also have been some flowers in amongst the weeds. I've learned a lot and hopefully absorbed some of the kindness, wisdom, and simplicity of self that was my dad.

This discussion board is a marvelous resource for anyone with a connection to this rare and devastating disease called cholangiocarcinoma. It just saddens me it's so desperately needed.

In hindsight, I don't see it as we lost this fight. The deck was stacked and the odds all but impossible. But victory isn't measured solely by winning. It is earned when we never surrender and when we willingly enter the battle, either for ourself or for a loved one, knowing death will inevitably win. We never gave up on my dad and I know individuals like each of you and everyone who enters the fray against this adversary called cancer will never give up either.

4

(61 replies, posted in Introductions!)

This morning at approximately 9:25am my father passed away. The end came quickly and peacefully with his wife by his side.

Both my sister and I were en route to his bedside when he died. While we were both too late to be there when he finally let go, my sister believes that, while he wanted his wife with him, he didn't want to die in front of the kids. That's most certainly something my father would do.

We are still taking all of this in and the coming days will be difficult, as many of you already know first hand. Perhaps it is some small solace that my dad chose this day, February 29th, as his last day on earth, knowing the date comes around only every four years so there will not be the yearly anniversary of the day our father died.

It is so very sad to have my father gone. But like all living things, he will always exist in the universe in some form.

Goodbye dad.

5

(61 replies, posted in Introductions!)

In the last two weeks there have been a few better days mixed in with several bad, but since the weekend my dad's health has declined precipitously. On Friday he managed to sit upright in his wheel chair for a short while, still able to smile at my bad old joke about the panda that walked into a bar. As of this afternoon, he is prone on his hospital bed, drifting in and out of consciousness, his eyes are closed, and breathing heavy. He is all but wordless. Because he is unable to swallow his pain meds, he has been shifted to morphine.

We know where this is headed and, at least in a general sense, know what to expect thanks in large part to this wonderful community on cholangiocarcinoma.org. We've prepared as best we can and now all we can do is make him as comfortable as possible in the days ahead.

Forty years ago he was diagnosed with melanoma and was told he had six months to live. Despite the odds against him, he won that battle and was able to see his two children grow up and he lived to grow old with the love of his life, my mother. But every story has an ending and this one is in its final pages.

He may not even realize this now, drifting in and out of his hazy morphine sleep, but he is teaching his children one final lesson. How to die with dignity and grace, and how to bid a proper farewell to a honorable life well lived.

Sharonlee,
I understand your feelings that you want to do all you can by exploring every option. I can tell by your posts that you are doing a great job taking care of your mom despite the obstacles in front of you. She's lucky to have you on her team.
Take care.

7

(61 replies, posted in Introductions!)

It seems things keep sliding downhill. We went to the doctor yesterday and, as I suspected, he was too weak for chemo. I had pre-briefed the ONC and this gave her a good opportunity to broach the subject of "what's next". My dad was very straightforward with the doctor and with us. He's tired of fighting and wants to quit. He said that if he could just go to sleep now and never wake up, he would. His weight keeps falling, his physical strength is all but gone and, as of this morning, he's now starting to complain of significant and specific pain. This from a man who has had severe scoliosis his entire life and never complained about that, so we know he's hurting. I understand and respect his feelings regarding his future. We now have the information to begin exploring hospice and our main focus is on making him as comfortable as possible. I've also reached out to the ONC and am taking immediate steps to address the newly appearing pain issues.

I wish there was more positive news to report. But like so many of you who have witnessed the awful trajectory of this disease, you realize there's nothing that can stop what's happening. So staying focused on making my dad comfortable and letting my mom know her kids are there is what's important now. I can't imagine what's going through her head now as she faces losing her husband of fifty eight years.

8

(61 replies, posted in Introductions!)

Thanks. I appreciate the concern. I actually have a message out to the doctor to ask if addressing the ascites will help any of his symptoms. I suspect that if he isn't healthy enough for the chemo this week, the ONC will segue that into a discussion about hospice.

9

(61 replies, posted in Introductions!)

No real progress to report. His cough has diminished a bit. The doctor feels it is likely bronchitis. Other than that, he keeps getting weaker, sleeps all the time, has no appetite and only forces himself to eat so that my mother will eat something. He is unable to get into/out of bed or even a chair without help. Some abdominal pain, although it seems non-specific. Edema and ascites as well.

We are scheduled to go back to the ONC on Wednesday. He has decided against the liver directed therapy so ONC wants to put him back on the gemzar since it seemed to be the best weapon we have. (Very slight tumor growth in 6 months.) Not sure if he'll be up to it or not.

I know these symptoms sound a lot like what others have witnessed with their loved ones and things aren't looking great. I don't know if it's unusual, but his numbers on paper (liver panel, CBC, etc.) still aren't all that bad. But lab results only tell part of the story.

10

(61 replies, posted in Introductions!)

Lainy,
Thanks. I do maintain a strong separate line of communication with the ONC (as I do with all the doctors) but haven't talked post x-ray. The issue of hospice has been brought up by the ONC as well as the GP, the interventional radiologist and the surgeon, but there's still a large amount of denial still at work. If it comes down to it, I will do the advance scouting if for no other reason than to have the next moves planned, whether they are needed in 2 weeks or 2 years.

My sense is, this just needs to be given a couple days to play itself out to see what direction this is heading. I know we all wish we had the script for how things are going to play out so we could act preemptively, but we don't.

11

(61 replies, posted in Introductions!)

Haven't posted much since there hasn't been much new to post about. For the most part, he's been doing well, considering. Normal routine of chemo and constant fatigue with general malaise seems to have been his biggest complaint since November. (He has lost almost 20% of his normal body weight.) The doctor put him on a daily does of steroids and that seemed to keep energy level from falling further. Because he's been holding up fairly well, they felt he was a candidate for liver directed therapy since his last scan showed limited tumor growth and measurable tumor necrosis since the previous scan in September.

However, not sure if he picked up something in the hospital or if it's coincidence, but following the mapping for his procedure, his condition has worsened by magnitudes. (They hadn't gotten to the radiation stage so side effects from the directed liver therapy were ruled out.) He now sleeps a lot more, has had a couple days where he could barely get out of bed (or ended going back to bad), is back in his wheel chair to get around (he was able to use a walker at Christmas) and he developed this horrid, wet-sounding (but non-productive) cough. Hearing it, our first thoughts were pneumonia although the chest x-rays didn't show anything. Concurrent with this decline and with two weeks of "very bad days", his outlook and optimism has faded immensely and his comments have gotten more grim. He doesn't have a fever but does have abdominal pain. No appetite to speak of either. (Up to now, he's wanted to eat.)

Not sure if this is a passing virus (or bacterial infection) or if it has other significance, but the cough is troubling. Any experience with these symptoms?

Right now, the doctor is giving the antibiotics time to work to see if that takes care of the cough.

12

(61 replies, posted in Introductions!)

Marion,
A liver transplant isn't currently on the horizon, but potentially chemo-embolization (or other forms of liver-directed treatments still tbd) to augment the systemic chemotherapy.

13

(61 replies, posted in Introductions!)

Thanks. As always, I will be asking plenty of questions.

Part of the reason for meeting with the interventional radiologist now is to bring him in the loop. Both the oncologist and the surgeon (who saw the tumor with his own eyes) feel my dad is a viable candidate for directed liver therapy if his overall health holds up. So we do have the CT scan that was completed in September as well as a first-hand report from the surgeon to give the interventional radiologist something to work with. In all likelihood, he probably wouldn't start a procedure until after the second round of Gemzar, which would be about the same time as the next CT scan is scheduled to run. So, more or less, we're trying to choreograph this on multiple fronts.

Another part is, after I asked the surgeon (who my dad respects) if directed liver therapy was an option and he said "definitely", and my dad's spirits lifted. When the oncologist repeated this endorsement, they went up another notch. So simply knowing we have one more weapon in our arsenal means the fight is far from over, so that helps too.

For what it's worth, his ad hoc team of doctors are concerned about maintaining as much quality of life as possible and are aware that his circumstances as a senior are different than those of someone younger, but at the same time are aggressive enough to be willing to try things as long as my dad wants to keep at it.

14

(61 replies, posted in Introductions!)

Not much news to report. CBC is improved, due no doubt to last week's transfusion. The oncologist felt he was doing well enough to have a third session of Gemzar, which I think came as a bit of a surprise since she was originally talking about one week on/one week off or, at best, two weeks on/one week off. So this counts as progress. Still no discernible side-effects from the chemo itself, although fatigue seems to be omnipresent which I assume to be "normal" from the tumor.

Also, I reached out to the interventional radiologist who performed his liver biopsy just to get a sense of whether setting up an appointment for him to take a look at my dad to see if liver directed therapy might be on the table. He was amenable to that so the appointment is in two weeks. We shall see.

He's also scheduled for a CT scan in five weeks. That will give a good picture into how this fight is going.

Mainly, I'm trying to make sure we've covered all the bases and not overlooked any options, even if they are not viable.

15

(61 replies, posted in Introductions!)

Dear All,
Well, he is feeling better today. (Yesterday was pretty bad.) Covered a range of issues with the oncologist. He is on steroids, but she increased the dosage to help address the lack of energy. His CBC results are mixed. White blood cell count is back into the normal range, iron levels back to normal, although his hemoglobin is down from last week to 9.1. (It was 9.8 a week ago and 13.8 in August.)

The doctor gave him the option of skipping this week's chemo but he decided he's willing to go with the two on/one off schedule. Figures it's best to charge ahead as long as he can. He is scheduled for a transfusion on Friday. His first. Hopefully this will address the hemoglobin issue. It's for one unit since his legs are still swollen and she didn't want to add to the problem by introducing too much fluid.

The funny part is, he said he had a taste for fried chicken. As someone who hasn't had an appetite since summer, that was good news. I snuck out of the room while he was getting chemo to ask the doctor to give my dad "permission" to eat something deep fried and not feel guilty. She obliged.

16

(61 replies, posted in Introductions!)

Lainy,
Will do. Seems there are a lot of questions for the oncologist tomorrow.
Thanks.

17

(61 replies, posted in Introductions!)

It's six days later and a question has come up. How does one know if symptoms are side-effects of the chemo or if they are a result of the CC?

Basically, he didn't feel any different in the day or two following the chemo. Now, in the last 36 hours, he feels measurably worse. He can barely walk due to weakness, says he hurts, general malaise, doesn't feel like eating, sleeps most of the time, etc. I know mentally this has to take a toll, but seeing him today he looked unhealthy.

Round two of chemo is scheduled for tomorrow afternoon. I think he is wondering whether it's worth the effort. (He told my sister he feels he's declining no matter how hard he tries not to.) Thanks to your suggestions, I plan on asking the doctor about vitamin D or other options to see if that might help. He's not on steroids, so that is another question I will pose.

Sidebar question. The doctors have him on Norco for the pain. Could this be contributing to his lack of energy? I would never want to deny him anything that makes him more comfortable. But I'm cautious about doctors making assumptions and possibly keeping him drugged simply because he's older and his cancer is non-resectible.

Thanks again. You are a wonderful group.

18

(7 replies, posted in Introductions!)

Hebrown,
My condolences to you and your entire family. I can't tell you how sorry I am. All I can say is, your father would be so very proud of you right now. A friend told me, "The hole in your heart will never go away, but one day it will get smaller." Take care.

19

(61 replies, posted in Introductions!)

Thanks again to all. I think he's surprised to hear he has a cheering section in all of you!

Well, my dad has his first round of chemo (Gemzar) yesterday. Twenty-eight hours later, he hasn't felt any side effects, ate a normal dinner, and slept most of the night, so I guess that's a good start. His blood work is a bit off (elevated WBC, low RBC, slight anemia, and very low iron). Should I assume this to be normal with CC? I tried questioning the RN & lab tech on this and was given a vague answer about how this is just a baseline by which future tests will be compared and you really can't tell anything by it. Which isn't telling me a whole lot.

The one question my dad keeps asking is, if chemo works as it's supposed to, will he get some of his strength back? Aside from the obvious concerns with this disease, I think it's driving him nuts that he has very little stamina.

20

(61 replies, posted in Introductions!)

Thanks for the support. He seemed a lot stronger yesterday so I think he's making the right decision. My mom is having a tough time with his disease and what lies ahead for both of them, but my dad is determined to fight since it beats the other option. So his attitude is good. He says he's accepted what may be down the road but in the meantime he's going to try and keep this cancer at bay.

21

(61 replies, posted in Introductions!)

Met with the oncologist today and she told my dad the pros & cons with chemo. She was very straight-forward and informative, which was good. So he is proceeding with gemcitabine to see how he handles it. If he does OK then she'll add cisplatin, I believe. He wants to fight this as long as he is able, so we have a plan.

22

(61 replies, posted in Introductions!)

Thank you all for offering both perspective and comfort with this. Having strangers who have been through or are going through this come forth to share their stories does help in making an informed choice. He has an appointment soon to meet with the oncologist who would be administering the chemo so this will give me the opportunity to present some of the questions that will help him decide what is best for his life.

Like Peggyp's father, my dad's raison d'etre has been to make sure my mom is taken care of, as she has health issues of her own. She's not doing too well with any of this and I believe one of his main goals is to get them moved into a retirement community quickly so there will be support and care for her when the time comes that he is no longer there. We are trying to keep the ball moving forward on this while simultaneously addressing the medical issues.

Pam, I empathize with what you went through. When my father first awoke from surgery he looked me in the eye and asked what the prognosis was. It was a tough moment.

PCL1029, can you elaborate on what you experienced with the chemo? I know the oncologist told my dad drugs take care of the nausea and the worst will be is that he will be "a little tired." I don't blame the doctor for trying to be encouraging and underplaying the chemo to some extent, but hearing from those who have been through the chemo, even if they did not have "side effects" is helpful. Like Marions addresses, the fact my dad is 81 years old comes into play but that it's the patient's overall health and not his numeric age that is the real determining factor. So much now depends on to what degree his health has been compromised.

And Lainy, thank you for you insight. Directly asking the oncologist just how much time chemo will buy might help determine when it is time to focus on steps beyond chemo.

I will update everyone after his next oncologist appointment.

Thank you all again.

23

(61 replies, posted in Introductions!)

In August of this year, after presenting symptoms of fatigue, shoulder pain, and loss of appetite (no jaundice however), my 81 year old father went to see his doctor. After being referred from his GP to a gastroenterologist, his liver panel showed elevated ALP levels and a subsequent CT scan showed he had a 7mm tumor on the left lobe of his liver. After consulting with a surgeon who specializes in biliary cancers, he felt he was a viable candidate for resection of the entire lobe.

The day of the surgery, we knew we were in trouble when, one hour after the operation began, a nurse called us into a private conference room so that the surgeon could speak with us. He informed us that he had discovered the primary tumor had fused itself to the stomach. In addition, there were two very small tumors on his right lobe. The pathology done during surgery indicated this to be colangiocarcinoma. (Intrahepatic.) Because of what he saw, he opted to abort the surgery.

Since that time, he has been extremely slow to recover from surgery. His overall physical health has declined precipitously, he has lost much of his mobility (which he is valiantly trying to regain despite weakness and pain), has no appetite (likely from the tumor pressed against his stomach), and is now experiencing serious bladder complications. (Due to age, as well as the toll surgery and the cancer has taken on his body.) My dad is willing to fight this and is one of the strongest willed people I have ever known, but has begun to feel the cards are stacked against him.

I understand that at this point, there is no cure for the cancer and that all treatment now is palliative. Understanding this, I have used the analogy that, as with chess, as long as you still have a move left you have not lost the game. So never surrender until checkmate.

The next stage is scheduled to be chemo. (Likely gemcitabine I believe.) The oncologist wants to start chemo as soon as he "recovers from surgery" but emphasized that it really needs to begin in the next couple of weeks. However, his one physician, who has known him for over a dozen years, quietly confided that, based on what he is witnessing with my dad's physical decline, the chemo might do him in since "his reserves are gone".

My dad turns to me for guidance with a lot of this. While I am not a physician, like many of you, I have sadly made learning as much as I can about CC as quickly as I can a key part of my life's work. So at least I have been able to question doctors and keep my dad somewhat informed of what is going on.

My question to those who have been through this is, when and how do we know when it's time to say "enough"? I know to my dad, quality far outweighs quantity with whatever time he has left. I do not want to see my dad's health compromised further by undergoing chemo if it won't improve his well-being, even short term. On the other side, if it will help alleviate any of his symptoms, I believe he's be willing to give it a shot.

So I am not asking for answers per se, just insight from those who have been down this path already.