Topic: Trying to learn about cc

Jan. 13, 2007 we took my husband to emergency because of severe abdominal pain.  He had been itching like crazy for several days prior, but we thought he was having an allergic reaction to something.  He had started experiencing weight loss and unusual fatique over the summer of 2006, but we had chalked it up to stress because his father had unexpectedly passed away and he was having a little trouble dealing with it, so to be safe, he went to the doctor and had a physical and the doctor, finding nothing out of the ordinary but the weight loss concured that it was probably stress.
That Sat. night in Jan. in the emergency room, when the doctor, after a ct scan and blood and urine tests were in , told us that she thought that he had pancreatic cancer that had metastisized to several other places, we were dumbfounded.
From that point the nightmare for us began.  We had to go to our primary care doctor to make arrangements to get a biopsy done and see an oncologist.  We originally went to the university of Michigan hospital, they did a liver biopsy on Jan 26 and we did not get the official diagnosis until Feb 9.  They told us that they had to do special stains with the biopsy because it was not matching pancreatic cancer stains and it wasn't until they did an ERCP to place stents (he was getting very jaundiced) that they determined that it was bile duct cancer or officially metatastic intrahepatic cholangiocarcinoma.  During that whole time, we were back and forth to emergency, he was hospitalized a couple of times for a few days, he was turning neon yellow and no one could tell us anything or do anything except try to relieve some of his symptoms.  Being unhappy with the runaround andimpersonal treatment we recieved there, we have gone with an oncologist from a smaller hospital system, but with every bit as good credentials.  My husband was told he had six months left without treatment, maybe more with treatment.  He was told his conditon was not operable and was offered a treatment 5 FU with a leucavorin drip,  He has just started his third round (once a week of six weeks, then 2 weeks rest) at this point everything is status quo, nothing has changed as far as the tumors are concerned.
I appoligize for rambling, but we both do not know if what he is experiencing is the norm and what else should we expect.  I should also tell you, he is 63 years old, has always been in good health, has been an avid runner for many years, has always maintained a good weight, nonsmoker, nondrinker, and has always eaten a healthy diet.  He has never even come close to bouncing back to normal.  Hehas continued to lose weight and is nothing but skin & bone, he has a very difficult time making himself eat, he tries to keep active, but as time goes on he hasall he can do to put one foot ahead of the other.  He has also had some problems with mental confusion
and the doctor did give him some medicine to help with that.  He takes a time release pain killer round the clock and still has to occacionally take some breakthrough meds.  He is starting to have a lot of swelling in his feet and legs and he is beginning to get jaundiced again, they tell us his stents may be getting clogged.  We aren't giving up, but need to know what some of the signs of the end stage are and when should certain conditions alarm us to take action?  We have been unable to get these answers.  Our children live all over the country and they are very concerned.  We all feel so helpless.  Sorry this is so long and rambling.  Thanks for being ther.

Re: Trying to learn about cc

Dear LD
As Patty and I read your post, it brings back the memories of our nightmare that started about the same time as your husband. started showing his symptoms.  My dear beautiful wife, Patty, was diagnosed in feb. 07.  Please read our story in the "experiences" section.  Patty's cc was also unresectable and we were told that chemo might help some but not to expect much from it.  Patty decided (and I agreed) that she would have no chemo or radiaiton.  After several stays in Tampa General hospital in Tampa Florida to insert stents, they were finally able to place the internal stents and we came home.  Since that time her health has steadily improved and her lab work is all improving.  Her CA19-9 came down some this last month.  She feels well and has regained her weight.  I tell you this to maybe share with you some of the alternative treatment that she is doing.  She drinks 20 ounces of fresh carrot juice a day and takes IP-6 and AHCC in large amounts.  She also takes Shitake mushroom and Reishi mushroom extract.  She eats no animal products and eats fresh whole foods.  Please know that we share in your pain and distress and we will pray for your husband's recovery.  We trust heavily in Prayer and the Lord's divine leading. 
Ted and Patty

Re: Trying to learn about cc

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,

Re: Trying to learn about cc

Dear Ted, Patty, & Joyce,

I appreciate what you have shared with me and the support you have offered.  I would give anything to see my husband regain some of his weight, but unfortunately, eating is a struggle for him, nothing tastes good (even things he used to love) to him.  Ironically, stewed tomatoes seem to be the most paletable to him, but it is almost zero in calories even with butter and sugar added.  Mango flavored gatorade is his drink of choice becuse he says it tastes close to water.  He is drinking V8 juice which he forces down and he tries to drink orange juice every day which he mixes with a protein powder.
I am glad for Patty that she has gained some weight and is doing fairly well.  You obviously have great faith and that is a wonderful thing to hang onto.  My husband is also a man of great faith and he is ready for whatever the Lord's will may be.  I am afraid I am struggling, my own faith, which I always thought was stronge is being sorely tested.  I am trying to be strong for my husband and children, but it is very hard.  This is a good avenue to share the frustration and utter helpless one feels watching a loved one in this circumstance.
Joyce, I see that you have experienced much of the frustration that we have with hospitals and Doctors.  This is such a tough cancer to treat and rare enough that not a whole lot is known about it.  We had a lot of people tell us to go to the Cancer Treatment Center of America, But our doctor told us That the Mayo Clinic would be the best place as they are one of the few places doing indepth research on this kind of cancer.  He called and talked to Mayo Clinic for us and they told him that my husband was not a candidate for them because his had spread too much on top of which his bilirubin level needed tobe below1.5 and thus far the lowest it has gone is 2.6.  Like you, I am always searching looking for answers or some kind of help.
I thank you all again for your input.

Re: Trying to learn about cc

Hya LD, Joyce, Ted and Patty.
I feel so much for you all. I too as Alans mom felt and had to go through all of the frustrations with the medical profession here in the U.K.  It was hopeless.
Alan needed two attempts to put a stent in and after only about a week it started to get infected. The line for the chemo that was going to be used had not even got to the stage of being implemented.
As with most of the others on this site Alan lost so much weight so quickly.
I feel, with hindsight that Alan knew he would not survive even with any treatments and he certainly made the most of his short time.
So much so that he booked tickets for himself and two friends  to go to the motorbike racing in spain to watch his beloved Rossi ride his bike. He had to fly to portugal and then drive into spain. I begged him not to drive and he said his friends would look after him.
After he passed away I found out that he had driven from portugal into spain whilst the other two slept. He looked so gaunt when he came home but looked good for being in the sunshime.  I feel so proud of him as he did this knowing that he would die when he came back and also that he could not eat anything at all and barely drink even a small amount of water. This was so important for Alan himself and he said when he came home, mom they think I have broken my leg and it will get better.
Other people havn't got a clue what it is like.
I myself think sometimes we need to listen to the other person and try to let them make their own decisions.We all try so hard to make everything right, yet feel so helpless. Many others on here are doing so well, and all are trying many different ways of dealing with this awful thing. I do hope you all will find something to help now and in the future. We are all here to help anytime love and light alan's mom