jmoneypenny

Hi Lana,
It’s great that your father seems to be responding to treatment – may he continue to do well! I just wanted to answer one question you brought up: why cc patients aren’t offered liver transplants. I looked into that a lot when my mother was diagnosed, and it turns out that even those with transplants wind up having some of the cancer recur in the new liver or elsewhere in the body — the invisible seeds of cancer are still there. If you’re in an early stage, they can do resection and part of the liver regenerates, so I guess they figure that’s better than wasting a liver on someone who’s in later stages, when there’s almost certainly cancer lurking around. Too bad they can’t make artificial livers – yet. Here’s hoping!

Love and hope to you and yours,
Joyce

Hi Zuzuby,
I don’t feel qualified to respond to most of your questions, as I have only personal experience to go by and I hate to be a downer by relating only negative aspects of chemo. I think it’s so hard to decide for or against chemo because it is so variable and everyone responds differently. You think if you don’t try it, you’ll kick yourself because MAYBE it could have been that miracle cure that it is for some people. Well, not a CURE, because there really is none, but a prolongation of life. I think I read that chemo has a positive effect on only 30% of cc patients – I may have that number wrong, but it was less than 50%.

The question that was most important to me when deciding about chemo for my mother was whether it would improve her quality of life, or let her have a DECENT quality of life for a while, whether or not it shrunk the hundreds of tumors in her liver. We were told unequivocally that it would improve her quality of life, so we went for it. They were wrong in my mother’s case, but for some people the chemo does wonders (many people on this site). My mother only had two rounds of Gemzar and Xeloda for two 2-week cycles and she didn’t handle the side effects well. She had a compromised immune system to begin with, and was overly sensitive to most drugs, even aspirin and Pepto Bismol, to name two. What I’m saying is that you may want to take your father’s physical tolerance into account – can he tolerate pain well? Does he have adverse reactions to drugs on occasion? I read up on the chemo agents before my mother took them, and found that 90% of people have side effects that are mild and treatable and not too debilitating. This was NOT the case with my mother, unfortunately. Also, anyone over 60 years of age usually has less ability to fight off the effects — usually. There are a lot of “ifs” and “buts” and it’s very frustrating. As far as side effects, the Gemzar was the worst for my mother – made her very nauseous (and the anti-nausea drugs didn’t provide complete relief), killed her appetite, which wasn’t so great at that point anyway, and made her anemic and short of breath so she had to be hospitalized. I really think the stress to her body made her succumb more quickly. As for the Xeloda, I forget her dosage, but the side effects were initially bad so she had to take a lower dose, then she had few problems. Everything tasted metallic to her, but she didn’t have the dreaded hand/foot syndrome that you hear about with Xeloda.

My mother was also stage 4 with her whole liver involved, but they found a couple of very small spots on her lungs that really weren’t symptomatic – but would have been over time. So it doesn’t need to spread beyond the liver to be debilitating. She never had surgery, however, because it was too late when it was discovered, so your father has a much more positive prognosis.

I think your idea about the CAT scan is the wisest choice right now – and I would hold off on chemo until you feel he’s deteriorating in some way. This is just my personal opinion, mind you. If he’s still recovering from surgery, it may be better to wait before you put his body through more stress. Then again, he could have bounced back very well from the surgery — like I said, so much depends on the individual and even then it’s hard to predict outcomes. I’ve heard that Avastin, while somewhat effective, can be very hard on the body and they don’t always like to use it on older people for that reason. We put off chemo until my mother started to get uncomfortable symptoms, but in hindsight I wouldn’t have done chemo at all – she only lived 2 months after diagnosis and had terrible quality of life. My stepfather died of lung cancer 4 years ago and he adamantly refused any type of chemo, and that made it so much easier for us that he had such a phobia about chemo, so we didn’t have to make a choice. You hate to think you’re giving up hope by giving up on chemo, but there are many people on this board who swear by natural remedies and foods – carrot juice, mushroom extract, etc. You can try those while you’re hashing out the chemo question.

Sorry to ramble on – I’m sure you’ll find useful info on this site, and please remember that there is no RIGHT answer, no matter how much information you absorb. I still feel guilty about letting my mother do her last round of chemo when I could have stopped her, but if she didn’t do chemo, I’d feel guilty too, so it’s a catch-22. What’s most important is to respect your father’s wishes and keep him informed. And, of course, to be there for him and let him know how much he’s loved. He could live another year or another 10 years – and I hope he continues to enjoy good health long after that.

Best of luck to you and your family – let us know how everything turns out. We’re all pulling for your father and sending our love –

Joyce

Jeff, that was truly beautiful. I am at a loss for words – even though it wasn’t meant for me, it was meant for me. Thank you for posting that poem. – Joyce

Hi Paula,
So sorry you and your family are going through this. Please know that all of us are with you and there’s no right or wrong answer to whether chemo is beneficial or not – with cc, it depends on the person. That said, I was struck by the fact that you said your dad has lupus. My mother had autoimmune hepatitis and they thought it was lupus at first because it exhibits the same symptoms and is an immune disorder of unknown origin, like lupus. I don’t know if it was because of her terrible immune system or her low pain threshold, but my mother didn’t tolerate chemo well AT ALL and in hindsight I wouldn’t have done it. Her quality of life wasn’t so bad when she first got diagnosed, but after a couple of weeks she had a lot of nausea and discomfort and weakness and we thought we’d give chemo a try. The chemo was definitely overwhelming to her system, much more so than it is to other people, and she died less than 2 months after diagnosis. I’m not telling you that your father’s case would be the same, but given the fact that chemo damages your immune system, I think a pre-existing immune problem could complicate matters. Also, anyone over the age of 60 usually has a tougher time with chemo.

My mom’s oncologist had her on a regimen of Gemzar and Xeloda also – and when we asked what would happen if we just didn’t opt for chemo at all, he said “With chemo, you’ll have bad quality of life – without chemo, it’ll be worse.” Of course, that really scared us, but he was an insensitive moron, as some doctors can be, and we shouldn’t have listened to him. The chemo caused my mother to become so weak and anemic and short of breath that she was hospitalized with cholangitis (infection) and made thoroughly miserable in the hospital. The best thing I’ve ever done in my life was when I broke her out of the hospital against doctor’s orders, told them we’d have no more chemo, and arranged for her to come home under hospice care. She only lived for 2 more weeks, so I know the chemo would have been useless suffering at that point. She also had allergies to many drugs, and all the drugs she took for her symptoms may have had a bad effect on her immune system, which was overloaded.

Like I said before, any decision you make is the right one – and I don’t want to advocate my position as if I know the answers. I just have my own personal experience to go by and your situation could be totally different. There are always miracles and amazing remissions and you have to hold on to that until all hope is gone or you’ll go insane.

I wish you and your father the best of luck in your battle,
– Joyce

Dear LD,
First of all, I’d like to say I’m sorry that you and your husband have to go through all of this – and with clueless doctors, to add to the confusion! My situation with my mother was similar and I believe everyone on this board will tell you that there is no ONE way that this cancer works – everyone is different. So the fluid retention and jaundice may be from blocked ducts, in which case they need to replace his stents or fix them somehow as soon as possible to relieve the poor man’s symptoms. If they think his stents are clogged, are they planning on doing something about it quickly? I just get so frustrated with doctors when they don’t act quickly on these issues, and I’m sure you’re just frantic, waiting for them to give you some direction to help your husband. So if the fluid retention isn’t due to clogging, it’s possible that some diuretic (water pill) could help. From my mother’s experience and from what I’ve read of others’ experiences, it seems to me that when water pills DO work, that means everything will be okay for a while. They didn’t work for my mother, didn’t reduce the swelling and actually made her dehydrated, and that was near the end, so I know (in hindsight) she was beyond help at that point. The swelling moved up to her thighs and actually started leaking from her pores, which meant her system was shutting down. I don’t want to alarm you in any way, so please don’t take my word as gospel, this is just my own personal experience.

Also, I found that chemo took SO MUCH out of my mother that I think it hastened her death because it made her more nauseous so she couldn’t eat and it made her anemic to the point that she felt she couldn’t breathe and she had to be hospitalized. I will always regret that we let her have that last chemo session, as it made her deteriorate quickly. Sometimes it’s good for your body to take a break from the toxins, especially when you’re in such a weakened state to begin with. Just my opinion – keep in mind that my mother didn’t tolerate the chemo well AT ALL, and I know a lot of people don’t have many problems with it, so that may not be a factor with your husband.

Lastly, as far as signs of the end stages, I was just like you, looking for all kinds of signs and getting no answers as to what to expect. At the end it happened terribly quickly – besides the increased swelling, she was fine but bedridden and alert one day, then started vomiting that night (which they say is a sign of the body purging in preparation for death), was unconscious and in pain for two days, then gone. This doesn’t necessarily mean that it happens this way with everyone.

I dearly hope that your husband’s stents are clogged and they can fix the problem and it’s nothing more serious than that. All my love and hope go out to you. Feel free to rant whenever you want — for sure, I’ve done it countless times!!

Best of luck,
Joyce

Hi all,
I think the question of heredity was discussed here earlier, with no real conclusion. I have been trying to get information on high cholesterol having a part in the development of liver problems – my mother had very high GOOD cholesterol and so do I, and I’ve read that cholesterol may play a part in liver malfunctioning.

My sister is convinced that she and I will die any minute from some kind of cancer, as my father died a week after my mother – of a rare brain cancer. Before that, no one really had cancer in my family. I’m not as full of doom and gloom about it, as it seems cancer can strike anyone at any time. But it does make you wonder, doesn’t it? My husband’s family has a bad history of breast cancer, yet the survival rate is amazing with early detection and education. Hopefully we can do the same for cc. It’s a rare cancer but becoming more rare every year – the cases are increasing at an alarming rate, so hopefully someone will look into the heredity factor – and, more importantly, a cure!!! Here’s hoping-
– Joyce

That’s wonderful to hear your husband is doing so well!!! We all need to hear good news and know that the odds CAN be beaten!!! May you both continue to have great results and long lives together – you are an inspiration. – Joyce