robynhar
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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 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.
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.
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……
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 !
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…..
