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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
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It was our experience that the oncology world just doesnt know that much about CC. It is rare, so there is no money in it, and most clinical trials are combined with other cancers, and the treatments for cc are primarily those used for pancreatic cancer. So you just dont get alot of attention when you say cc. What can they say? All forms and combinations of chemo are statistically not helpful, and when I did extensive research and questioned the oncologist on this, he stated there just wasnt anything else. My husband chose not to take anything, and we had a summer of good travel and fun before the disease caught up with us. He thought it was better than just being sick for no reason.
The Ascites is indicitive of the CC beast. It is not, as I researched, a symptom of any chemo (of course I can be wrong about that) but happens alot with CC. My husband had it very bad end stage. He was drained, and it came back within a week. Very disheartening (as almost everything was to us about this) Any time they tap into the abdomen , there is chance of infection, so the docs arent forthcoming to advise this procedure. You may want to run a word search here, there have been many posts about it.
Ld, that is the same with my husband. I feel I lost him way before the cancer diagnosis, and it was more than fatigue etc. His whole personality changed, and not for the better. I can seehim being angry and bitter after diagnosis, but what about the months before when He would look at me almost with distain, like I was an enemy. A friend of mine said "What do you think you could have done to make him feel disconnected?' My reply was I did not know ...but what did the dogs do? He was the same with the animals, always loved them,and they gravitated toward him. He was loved by the cats too, and you know how hard cat love is to attain. But during this process, he neglected the animals emotionally also.
I also understand about the shrinking. My husbands butt muscles started to atrophy long before we knew about the CC. And then the power naps. We wrote all that off to aging, but sometimes I noticed his facial color did not look right. I reminded him to tan one night, saying he looked whale belly white. (oopps) I even mentioned it to the counselor I made him go to. What a waste that was.
Even when we found out about the CC it was still hard to cope with the empty man vs that loving husband I spent so much time with.
Thanks for sharing all this with me, it helps to know that there is no blame.
My husband Rick seemed to change emotionally , as near as I can figure, around 2005. It seemed to come on gradually, he was disconnecting and very distant. I blamed it on the possiblity of male menopause, mid life crisis, whatever. We had been married 22 years by then, and i thot I knew him well. But he as emotionally void. I cant really explain it. Finally we went to counseling, and again, non participant. I tried to be close with him but he just was not "there". I felt very threatened but just did not know why. Then he started to age fast, and get tired alot etc. I knew something was wrong and he did get a physical and passed. (How they palpated his abdomen and missed a 15 cm tumor I just dont know, I could feel it myself) He died the first of this year, and I never saw the old Rick again. I wanted to cherish our remaining time but he seemed unable to ...feel, for the lack of a better word. I wonder if anyone else has gone thru anything like this. I feel like I lost my husband long before I actually experienced his death. I do believe it was the cancer, I found no evidence of anything else. The timing was right, but I am still confused about it. So I focus on thought of the normal Rick who was a bunch of fun almost my whole married life. But the last few years I was married to a stranger.
My husband was cursed with ascites, what a mess. He was like a pregnant woman, so much fluid. We had it drained in the hospital but it came back in a week, which is also the way it seems to work. My husband was at end stage when this occured.
I considered my hospice team a total failure. It was a bunch of little things that added up, and the worse he got the less they gave.
The last visit we had with the oncologist, they suggested Hospice. AFter admission, it took me almost 3 weeks to get him a simple massage (i hoped for a few times per week) and it was simple. I did them myself after that. Meanwhile he was absolutely falling on his face (not literally tho), declining very quickly. See ya next week was the attitude. I had one of my nurse friends teach me how to give bed baths, she brought a nice bath pack you put in the micro, no rinse and very handy. Hospice sent out a lady with no supplies at all. No nothing. She missed his hand, armpits, feet and said she did not want to do his privates. At least she was nice. Thank God Rick was out of it by then, he would have been so embarrassed. I asked the nurse about the bath pack, she knew nothing about it. I am wondering now if they all just fell off the turnip truck. When I called in the eve shook up , Rick was basically drowning with so much liquid in his lungs, it was spewing out his mouth and nose, they said to give him some opthalmic drops under his tongue (provided in his comfort pack) But I could not even find his tongue hardly. Meanwhile family is upset, I am upset, no hospice help anywhere. I called my nurse friend who does womens health care, she knew more and at least explained what was happening and why and to lift his head a bit. Hospice did call thenext morn and confirmed the weekly appointment for Thurs but he was dead and gone by then. In the meantime I told them I no longer needed the "help" as I considered them not to be any. The socal worker called and asked what the problem was and blamed it on my grief. Before I hung up she said "Mrs Harder, you cannot possibly give your husband quality care if you are mad at us" I promply said "Yes I can and it wont be with you". I wont ever forget her comment. That was after she told me that my friends and family were doing me a disservice by giving me conflicting information. I dont know what I would have done without the advice and help they gave!
There were alot of other red flags, and I started to question myself knowing this is a time when you just want to be mad at something. It did seem to others too that they were a decade behind. I just got no comfort from them what so ever.
I dont believe that my experience is the norm for hospice, but consider asking some specific questions about the services. I hope this helps someone and that your experience is as good as the reputation.
From everything I have read and heard on hospice, some are still stricly volunteer. I email with a lady in Seattle whos husband died 2 mo before mine. She said her hospice was great, and all volunteer. Mine was thru Multi care. We had the best insurance, thanks to his wonderful boss who kept him on it thru the cancer. So I expected we would get wonderful Hospice also. I was very dissapointed, and I will do a post now explaining a bit more of my Hospice experience. I have trouble sitting in one spot long, nervous energy i suppose. I am 3 weeks out now and still its so fresh, I wake up in the morn with that tape of the last days running thru my head. So I get up and get busy !!!
Kelly, I live in a small rural area outside of Tacoma, Wa (graham) on some areage with my horses and dogs, cats , whatever seems to come up the driveway doesnt want to leave. I am hoping all this work involved in keeping this place going will be good for me. It is a bit overwhelming right now! But it will be good for me in a way. I do love it here and dont want to sell.
Yes, you can change your hospice people if you so desire, I was in the middle of that when Rick died. Ask specific questions like....if they say they offer massage, how often? Rick loved that but they came once (it took them about 2 weeks to get him on the schedule) and then I did not bother to reschedule because they were limited on time and I knew he would not make it . Cancer has its own schedule. Also what about bathing....there came a time when I just could not get him into the shower and it took me 3 days to get a bath person here and then she did not want to do privates (??) It just seemed to be one screw up after another. At the end of life, the toxins have a particular odor, and I wanted him to be clean. There are bath packs you can buy that you warm in the micro and they are no rinse, very convenient. My nurse knew nothing about them ! I had to find out about most of the items from my nurse friend. I wanted to learn about cleaning him, but the bed bath person missed his hands, feet, armpits and did not want to do privates. I did not want to learn from her, altho she was very sweet. That was only some of the experiences, now they lost my FMLA papers (family leave) and dont bother calling me back.
Another thing I would want to ask is HOliday Availabillity...cancer does not rest on Christmas and New Years but it seemed everything was backlogged as far as the service. Ask them , when the going gets tough, how many visits by the nurse are allowed each week. Mine was once per week, and of course he was dead 3 days by my next appointment. I was told when I signed up they would take care of everything. Find out they do and when, get specific. HOw often can they be available if things get rough for you. I thank God I had the family and friends I have ! They came through for me so much. What if I was older, not fit, and had no one and had to rely on except my Hospice team. I would have been devastated, more than the initial grieving.
Kelly, it is probably because they cannot offer much in his case, sorry to say, just my opinion. The apetite loss I dealt with, and it is a big part of it. Toward the end he just was not interested, the body knows when it is shutting down. He had abdominal pain, but not terribly bad. A few oxycodones per day did it for him til toward the end. A couple days before he died he was not lucid....he mumbled alot, but could not communicate, altho he did not seem in much pain. He did yell out " Get me outta here" over and over until I said "I am warming up the car for us to go, take this medicine and we will get out of here" That is when I began the liquid morphine in the hospice comfort care package. That was the toughest part of this all for me, I thot once I started that, it was the end. It was a terrible last 3 or 4 days, thank goodness I had family and friends. I had a friend stay with me the last night, she had lost her husband to pancreatic cancer just a year before. She was wonderful, with me to the end. She stayed til they picked him up in the morning. Then that vacant feeling comes, when you just cant believe it. AFter 2 weeks I am still there,....thinking he will come home. But one foot goes in front of the other til you have a different past.
Rick was diagnosed in Feb 07, and it was a long year. He started chemo and that was short lived. We had researched and found chemo to be more harm than good with this particular type of cancer (when questioned the doc finally says "its all we can offer") So he chose good diet and living fully until he could not , and we sure had a good fun filled summer. After his stent to the bile duct, he got most of his energy and weight back. Ahh but the cancer does have its way. He started failing about Oct, and luckily it was quick. Weakness, loss of appetite, abdominal swellig and later acites, more weight loss and weakness, then the inability to eat at all. more weakness, I could not lift him, shower etc. Thank God for good family and friends. I found Hospice to be little or no help, I will post about that later. I did not do research on them, as everyone says they are wonderful. Not so for me. Now I am knee deep in the business end, funeral arrangements or I should say party , celebration planning. Everyone needs death certificates! Its hard to grieve and do all this too. After his death family came in waves and it seemed all I did was entertain when I wanted to veg out. I finally said Im going to the barn and left them, but when I came in another group was there. So I was exhaused and I know they were trying to be there for me and respected that.... I am getting thru it, and just cant believe I am awidow at 54. It is very scary even tho I have been very self sufficient.
If anyone has any questions about what happens toward the end (as I did ) please ask. For you who have not been there, everyone is different but I could have used more Heads UP (hospice was not helpful for me one bit) It gets lonely at night, but I am filling my evenings up with lot s of things to do and that helps. This site is so helpful, it was a Godsend to me.
Mu husband was diagnosed early this year Feb 07 with CC and a huge tumor on the liver, 15 cm not resectable. We did the tour of oncologists, even U of Wa and off to Houston to MD Anderson. Wow beware of the clinical trials ! After all was said and done, and research upon research, he only did a short stint on chemo. too much neuropathy and side effects. So he did althernative therapies, ate a high alkaline diet, and lasted the year, so far. (He was given 2 mo if he did not participate in chemo, which statistically doesnt do much be we were told "its all we have". During the year we travelled and packed alot in those months. Now he has deteriorated and at end stage. HIs tumor not only grew, but has buddies in there. Hospice has recently taken over his case. The end is going just how hospice has precicted, weight loss with no appetite, dry skin, yellow tinge, fatigue, some abdominal pain and acites (abdominal swelling) NOt alot of happy ending with this type of cancer, so I am glad we enjoyed the healthy time while we had it. Live like there is no tomorrow !! Which I have learned we should all do more of. I live alot more in the moment now, having learned so much from this process. Any info you need, we are all here. This site is the best one out there, very specific. You are not alone. Robyn
My husband Rick, diagnosed in Feb and stented then, refused treatment (since in our research it was known not to have much effect with CC) and has lived life fairly full til just recently. The last month or so we can really see the symptoms of CC creeping up on him. Fatigue, weight loss, abdominal pain (15 plus CM tumor and some buddies) depression, textbook stuff in stage 4. Anyway, recently he developed ascities, and yesturday they drained 3.3 liters !!! WE thot he would feel better but he is in bed and in pain today. They did say it has a great chance of coming back within a week, and talked about the drain, but again, the risk of infection is great and its something they just dont like to do. Our doc says we will wail til later....meaning...what? I know from research he doesnt have much of a later. So we'll wait and see. I just hate the pain part, as I feel it too.
My husband also, intrahepatic diagnosed early 07, metal stent for his jaundice at that time. so far so good with that. He has mets to the liver, a 15 plus cm tumor with some buddies in there....so the docs everywhere TD'd us for every surgical procedure. Not that we did not try, going from Tac Gen to University of Wa to Huston MD Anderson. Clinical trials are all that is left. After that trip his regular onc. offered some Tarceva which is not known to work for CC and very spendy. I think he just wants him on "something". They do tend to generalize in medicine and with CC we are lumped in with other similar cancers for lack of knowledge. He never took the Tarceva, the pharmacist gave us a printout on it that was not from the pharmaceutical company and it was astounding in side effects, especially for a person with only 20% liver function. He is very up and around altho loosing weight. He is now on a high alkaline diet and ,yes, wheat grass shot every day. We know it is only a matter of time, but isnt all life like that. Sieze the day !!! I tell him that every morn and he laughs. He is slipping a bit here and there, but I am so glad that as yet there is no pain. The only meds he takes are to help with sleep. I dont know why cancer patients dont sleep well. I think Bob, the tumor, has nightly parties in his liver......
To recap, my husband Rick was diagnosed with CC about Feb 2007 in emmergency when Jaundiced...he was stented, and got back to normal. (he is intrahepatic and tumor on liver huge at 15 cm, with friends) I studied every day, just on this particular cancer, (it can be endless) and almost everything indicates chemo just doesnt work. They seem to want to give it anyway even tho they all admit the numbers dont back it up. We tried chemo, the general cook book therapy they start everyone on, and the neuropathy opened his eyes and he went another way. Alternative, diet, absolutely no sugar (in fact the whole family has given it up since cancer seems to thrive on it) Docs did not say anything about what he could do diet wise to help, only come in and put insurance money in the pot. ACtually they still are pressing him to try different chemos, and he says no way. He is going for quality, and I admit it was a great summer filled with travel, high energy sporting etc....we figured use that energy while its still here instead of letting chemo make him sick. He is slipping slowly, and we feel a bit guilty knowing we made a choice the oncologists dont seem to like. But the more research I do the more glad I am he chose this route. The Americans seem to be backwards with cancer, not testing to see if one chemo can work better than another. I guess I just dont get it. How are the rest of you making your decision on what therapy to choose....and is there guilt involved if you shun the system? robyn
One of the last things offered to us was Tarceva, very expensive chemo (I guess you have to work your way up to it since the insurance doesnt want to pay ) He decided to try it, since its a last resort. We got insurance clearance, he picked it up, but the pharmacist gave him a page off the net about it, naming percentages of side effects. Rashes on 74 % all that. She was very concerned. But what was the deal breaker was the liver itself. It can cause permanent liver damage, and they want to give this to him when he is jaundice some of the time....wow... His liver is probably at about 20%, he cant loose much more without keeling over. Why would they do that? So here it sits, he says no way.Thru all of this he has felt good and has no pain, the disease is just taking its course. He did not respond to chemo, and altho he did not take it long, he is sorry he took it at all.
Rick has recently broken out with cold sores, and they are spreading to his nose. Is that from his liver disfunction? He is not on any therapy. We know his liver is not functioning well. I think I had read something about the sores but just cant remember. I have researched so much its a blurrrrr.....
Yes, several similarities with our men! Rick is also beginning to notice weight loss once again, altho not bad yet. He does admit the appetite is not normal and he is trying to keep eating well. Rick was diagnosed after a jaundice emmergency room trip, CT showed Bob loud and clear on the liver.When they stented the bile duct, it made a whole difference !
MD Anderson called, high pressure for Rick to guinnea pig for the clinical trials, he said it was like a car salesman. He asked about the CT and the doc said the tumor had grown, but he did not know how much (red flag there ) IF he knew it grew why doesnt he know how much, or was it he did not want to discuss on the phone....scarey. They want him to participate with Herceptin, but in researching, Rick has decided it is not what he wants. It has been great with breast cancer....but not with liver. No insurance coverage, and flying every 3 weeks, plus they have a clause in the paperwork that states if you have problems, even if they are the fault of the hospital, that the hospital will treat you but you will be responsible for the costs. Wow, that opens alot of doors, some called medical bankruptcy. We are waiting for the scans got get to Tacoma General, and then have a consult with his oncologist and go from there. My main fear, just how fast is Bob growing ...and of course in what direction. I wish i could take a day off from Fear. and I bet so does hub.
We were considering this therapy, and I researched, but we were turned down for it. Ricks tumor, Bob, was about 15 cm, and now has grown and has buddies in there.(we were rejected not only for size but the fact that the gemzar and oxaliplatin did not work) I did read that the necropsy, death of the tumor tissue, can cause the pain and nausea so maybe that has a good side. I had also read that Xeloda has a good reputation as far as patient side effects, but also not a good percentage of success at any degree in cc. The stats were something like 15% success rate, but success meaning an average of 2.3 mo. These stats vary, but you really have to get into what the researchers or docs call success. In this case, every little bit helps, and with combined therapies and little side effects, who knows ! Right now we are doing nothing, which isnt good either, Rick is considering Integrative medicine, combining both alternative therapies and standard treatment. He has a consult soon with his oncologist as soon as they get the info from MD Anderson on latest CT results. good luck to us all robyn in Seattle
Yes, I try to play it off....he always was a bit spacey, and so am i. But it is beginning to bother him altho it is not bad enough yet to make a big deal out of. I am thinking tho, how bad can it get? He is also starting to loose weight again after gaining, and i see him slipping. After the MD Anderson visit last week he is understanding that he probably wont get out of this one alive and well. Now he is accepting his fate instead of being angry and bitter. He says he is finding some peace. All of this is heartbreaking, as we ALL KNOW !
Husband Rick still has slight confusion, it doesnt seem to be any worse but it is still there, and adds to his agitation. His blood looks good, or so they say. I cant read the reports and have had little success in researching to be able to understand what they mean. When we were in Huston I was very aware that he now has little sense of direction, and being in a strange environment brought out more confusion. Is there anything we can do about that? I wish he would get more water down, but he does work on that. Anyone have any info ? He is normal other than a bit of confusion and depression (cant blame him there) still strong etc. thanks
Just to re cap, my husband Rick has cc, metal stent in March when diagnosed which brought em back to the living ! He also has Bob, the 15 cm tumor on the left lobe of the liver with a couple buddies now, lesions. Its been a big no on every therapy and procedure, too big for ressection, tace, embolization etc. He did chemo but the oxy gave him such bad neuropathy. He chose quality. We have been cramming alot of life in the last few months. I can see him slipping here and there, but glad he still feels good. The tumor is so big it is hard to get stats on how others have done. .....anyway,
We went last week to the clinic, what a huge place. You could put U of Wa in the corner and loose it fast. Our choices were only clinical trials, (we figured that) one with combined chemo, and the other Herceptin (showing great promise with breast cancer but little with much else, and very hard on the heart.) They also said they would only treat there,(since it is their trial) making it hard to fly from Seattle each 3 week treatment for the Herceptin. Since nothing sounds promising, we did fly home as soon as all the appointments were done. HIs case was presented at the tumor board that evening. The doctor never did call when the board was finished, the nurse called 2 days later (today) so we are trying to consult over the phone with the doctor.
We are waiting to find out how the CTs look now, what changes Bob has made in the last 2 months, if any.
The doctor here in Tacoma wants Rick to try Tarceva, wow spendy stuff . You must have to work your way up to the good stuff which is expensive and the insurance companys of course frown on that ! In a bit of research yesturday I found Tarceva to be a fairly good chemo on the body , rashes being the cheif complaint, working well on some and not at all on others. My findings have been this is such a rare cancer they do appy therapies from other adenocarcinomas (glandular) such as pancreatic because they are common in cellular structure.
It is hard for a layman to sort out all the clinical terminology but it helps to know all we can when we have to fight so hard and there are so many existing opinions. Sharing is great, please let me know any tidbit of info if you have any input. Thanks Robyn
There was a post giving instructions on getting to the blogs and I tried and did not make it (sounds like its a long journey instead of poking digits with fingers) Anyway, can someone get me there? Thanks robyn
Please write how he is doing now, all info helps. We are in Wa also, and have been to the U of W with Dr Sam Whiting, what a great guy but no help, as they did turn us down for ressection. We are off to Huston as last resort to MD Anderson on the 10 of Sept. My husband is healthy again, after the stent, but has a 15 cm tumor on left lobe, with some friends coming on. Its mental anguish for all of us. We are enjoying the healthy days as we know they are limited.....
Hey Jeff....sorry for any confusion, Rick is healthy other than slight confusion lately. No, he is not coughing up blood !! acchhhh!!! The trio is no problem, we have been on many and have been on this particular boat 3 other times. Only not with cancer. My fear is , of course, to have something bad hoppen when we are far away from home, so I am trying to get as prepared as possible. Since it may be the last big trip we can take together, it is important for it to be just the greatest. I will research what he can take in case the amonia levels increase. Thanks, sorry for any confusion.
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