Learn about the only 2 options of metastatic liver cancer: cure or care, as crude as it gets…
Today I read 2 comments that summarize metastatic liver cancer to the fullest:
- one is an update of Jim’s son – metastaticliver cancer survivor, 22 months after his diagnosis
- the other is listed below from Kath-e: recently diagnosed and opting for hospice and palliative care.
I will publish her story below as is – capitals included, taking opium pain killers – because it reminds me so much of the situation and emotions we went through when we, hospice and health care nurses were taking care of our father at home:
KATH-E…UPDATE…WELL I’VE KNOWN NOW OFFICIALLY SINCE 4/16/10 THAT I’VE BEEN GIVEN 3-6 MONTHS WITH NON HODGKIN’S LYMPHOMA WITH LIVER METASTASES…
I READ WHAT I’VE PREVIOUSLY WRITTEN AND I LAUGH AT MYSELF…WOW..WAS I SCARED HUH..
WELL HERE I AM ON AT HOME HOSPICE …THEY ARE GREAT BUT YES THEY COULD PROBABLY USE SOME HELP WITH HOME-CARE WORKERS BUT..YOU CANT BE THE CARING..LOVING…GIVING..UNDERSTANDING THAT THESE PEOPLE ARE….I SO GREATFUL!!
WELL I READ SOMEWHERE THE LIVER HAS NO PAIN!…WHOOOAAA!!..OH YES IT DOES..I WAS JUST PUT ON MORPHINE ON THIS PAST FRI 6/4/10…I STARTED OUT WITH EVERY 4 HOURS ON LIQUID MORPHINE AND ON THE SAME DAY THEY HAD TO UP IT TO EVERY 3 HOURS…I STOPPED IT AT THAT POINT…
FOR TWO DAYS..I WAS THEN TOLD TO TAKE IT EVERY TWO HOURS…AS SOON AS IT WEARS OFF I NEEDED MORE OR I COULDN’T MOVE…
I DON’T WANT TO LIVE LIKE THIS…MY HOSPICE NURSE CAME TODAY AND CHANGED THE DOSING TO EVERY FOUR HOURS BUT DOUBLE THE DOSE AS PREVIOUSLY INDICATED…SO FAR ITS WORKING..
SO SAD…SATURDAY I HAD A CUP OF SOUP AND THAT WAS TO MUCH…SUN I COULDN’T EAT AT ALL..MONDAY….TODAY…A LITTLE COTTAGE CHEESE…
- APPETITE IS DIMINISHING EVERY DAY LESS AND LESS..
- FEELING TIRED AND SLEEPING MORE IS MORE PROMINENT…
- LOTS OF NEW LYMPH NODES WHICH ISSN’T SURPRISING…
- EVERY DAY THE PAIN IN THE LIVER AND ABDOMEN APPEARS TO BE GETTING WORSE…
YOU CAN ACTUALLY SEE THE CANCER BEGINNING TO STICK OUT JUST BELOW THE RIB CAGE WHERE THE LIVER IS AS ITS QUITE SWOLLEN AND TENDER…
I KNOW IT CAN ONLY GET WORSE AND QUITE QUICKLY AT STAGE 4B…
I’M JUST THANKFUL THAT I’M NOT IN DENIAL ABOUT MY DISEASE…I’VE COME TO ACCEPT IT AND LEARN ALL I CAN ABOUT IT…
THIS HAS HELPED ME TREMENDOUSLY!!
ILL CONTINUE TO PRAY FOR ALL OF YOU AND YOURS!
STRIDES ARE BEING MADE EVERY DAY FOR TREATMENT…HOWEVER SOME DAY THERE WILL BE A CURE…SOME DAY..
Hi Catherine,
It’s not easy to accept that a person that looks ok is more sick than he or she looks. It took us a really abrupt doctor to tell us “your father is dying”, to get real about the whole situation.
Now nobody lives eternally, it’s just that e.g. me always hoped that my father would live many years to come and I could visit him anytime sooner or later, especially later. And suddenly you come to the hard fact that life is over.
It’s more about accepting that we live an ending life than believing that everybody will reach 100 and above, so we can postpone things we should be doing right here and now. Lots of words to say that ‘it takes some time for things to become real’.
I read in your fathers journal that the chemo went ok, apart from the cold feeling, so that’s already good news.
Miracles do happen, but plan B is to make the best out of life in case the miracle doesn’t come.
And yes, I am asking myself a similar question: why can human beings fly to the moon but not cure cancer for everybody? And why can’t they even find out why so many people get so many cancers in the first place?
Bottom line Catherine: it’s not easy to grasp and lots of questions will be asked. Remember the story: “I will continue, as long as I can enjoy icecream.”
Hugs,
Kim
From Catherine, sent by email in response to invitation to become a co-author on this site.
Thanks – we may eventually do that. Right now I’m still at the stage of thinking all the stff is about other people. Not us. My dad will fly through the chemotherapy with little or no side effects – then there will be a miracle and he will be able to cut down the frequency of chemotherapy treatments – and then there will be a miracle and it will all disappear one day and the oncologist will throw his hands up in the air, un able to explain it.
I’ve heard about so many people’s friends or family members who have done remarkably well coming back from lymphoma or breast cancer. The oncologist says there are so many amazing advancements in cancer treatments – why not for my dad too? Am I a drama queen for feeling that he really is going to die? And sooner rather than later? From what I’ve read, o ly a teeny tiny per centage make it 5 years – but not if the only treatment option they have is chemotherapy. In our
case, we’ll blessed to get three years – but it is not likely. If there’s better news out there, I haven’t found it. sorry to be such a downer – this is where I am at today.
Catherine
Hi Catherine,
Thanks for sharing your dad’s website/journal, I went over and left a hug 🙂 Looking forward to many more entries!
For everybody else here:
Catherine’s dad’s website, – Bill’s website that is – requires you to fill in your email and check if you want to receive updates from the overal hosting site: Caringbridge.org: a free, personalized patient information website for anyone dealing with cancer, a premature birth or serious health event.
Hugs,
Kim
From Catherine, sent by email:
Hey – I spent a good deal of time reading through those links you provided. They are very helpful – especially the one about hospice and the quality of life – what is most important to the patient. I hope it is not inappropriate to mention this – but here’s my dad’s site in case you have a moment to look:
A new journal entry for Bill’s CaringBridge website was posted at 12:51:00 PM on Jan 3, 2011.
Read the latest update and show your support at: http://www.caringbridge.org/visit/bill_owen
We can use al the prayers we can get and any encouraging word straight to Dad is another step to him feeing good.
Catherine
You are welcome Catherine. Start talking here, breaking the silence is the hard part.
Any more recommended reading? I suppose you must have googled almost “the whole internet” by now? That’s what lots of us do.
Have a look at : http://www.metastaticlivercancer.org/2010-08-07-cancer-treatment/i%E2%80%99m-willing-to-stay-alive-if-i%E2%80%99m-able-to-eat-chocolate-ice-cream-and-watch-football-on-tv/
Do know that everybody reacts different and even in 1 family there will be some that are open to talk, others will keep distant, because let’s face it: it is not an easy matter and there is no repeatable miracle cure.
Having said that, it boils down to how we all try to live with a loved one having cancer, a good place to get a feel of what’s coming is reading all the comments at http://www.metastaticlivercancer.org/2008-08-29-cancer-treatment/can-chemotherapy-cure-metastatic-liver-cancer/.
Yes, it’s like everything LOOKS ok from the outside. Don’t worry about falling apart into a million pieces, it will most likely happen anyway, sometimes even more than once just don’t do it at a moment your father needs your support.
If it’s a stage 4 cancer, is it a lung cancer or a colon cancer or another one? What is the diagnosis (something like adenocarcinoma with ??? primary).
What does it mean that chemo will continue as long as the cancer responds and as long as Dad can “tolerate” it. It means that as long as the cancer get’s killed or at least doesn’t grow more, the chemo is ‘effective’. However, chemo will destroy the immune system, so you become weaker until the chemo and the weak body together can’t fight the chemo any longer. That’s why we always say on our page: try anything that keeps the immune system as strong as possible.
In other words: chemo as given by these doctors is a temporary measure to keep the cancer at bay, not to kill it.
Is it possible to live an “active” life with stage four liver cancer like my dad’s? And for how long? A year? Three years? Five? Your doctors will give you a prognosis. Chibi’s brother Dick is living an active life with chemo and metastatic liver cancer. Jim’s son was beating the cancer much, much longer than the doctor’s had prognosed. However, all depends on the fighting spirit, the overal health of the person and his/her support group. My father had no mood to fight a losing battle, so he finished 5 rom the 3 to 6 months prognosis, although it looked at a point that the 3 months where the limit.
Best case scenario is that doctors find a cure that they understand and can repeat, closely followed by a miracle that happened to Kath-e.
Good case scenario is that you, your father, your family and friends can enjoy life like before the diagnosis.
Bad case scenario is that the patient gets a depression, that the abdominal pain is not well under controle, that the mind starts playing tricks to the body and that the patient gets dehydrated and water starts building up inside the body (starting with thick feet).
All questions you should ask to your doctors, GP, and re-ask here, so you hear both the medical experts as the experience of care-givers like you and almost all of us. I would also say: get a second opinion, or find a clinical trial that’s hopeful.
Another option is not to do any chemo at all, which was father’s option but in his case the primary cancer wasn’t detected so the chemo would have been such a strong cocktail to battle “the unknown cancer” (basically, battle them all and hope you get the right one). It would have resulted in a few months extra life out of which some days would be being very sick due to the chemo. Again your doctors can advice you best.
Drop by any time with anything: the good, the bad and the ugly or just to say hi.
Hugs,
Kim
Thank you so much for answering me Kim! I cannot tell you how isolated I feel. I haven’t talked much to my brothers and sisters since we got the results of the CT scan on Wednesday. As strange as it may sound, everything in my life LOOKS normal (Dad looks like the same old dad he was at Thanksgiving before we knew about the cancer). But I am putting off falling apart into a million pieces – which will most likely happen if I talk to anyone other than Mom and Dad.
This past Wednesday (12/29/2010) I accompanied Mom and Dad to the Mayo Clinic to learn the CT scan results. His colon resection in 2007 had resulted in a clean bill of health. The CT scan and biopsy of 12 lymph nodes after that surgery (in 2007) showed all the cancer had been removed. At that time it was decided that chemo would do more harm than good, since the recovery seemed to be total.
Wednesday’s CT scan showed 4 liver tumors, the largest being 6 cm. The two largest were deep inside the liver. Also visible are 4 – 5 lung tumors in the lower right quadrant. The largest of those tumors appears to be a tiny bit larger than half an inch. There were at least 2 lymph nodes that showed a tumor each.
This is stage 4, according to the doctor. Surgery and radiation are not options. We are left with chemotherapy for two days every other week. Then another CT scan will be done in two months. This chemo will continue as long as the cancer responds and as long as Dad can “tolerate” it. What does THAT mean? ANd how long can a person tolerate poison being injected into their body? They said that once chemo stops, the cancers will continue to grow – and that we cannot know how many other cancer cells are throughout the liver.
Is it possible to live an “active” life with stage four liver cancer like my dad’s? And for how long? A year? Three years? Five?
What is the best case scenario? Worst case scenario? These are questions perhaps more for the doctors – but I fear they do not want to take away our hope and so they are being vague.
Any suggestions you can provide – or recommended reading or websites. Please know that I appreciate it with all my heart.
Catherine
Hi Catherine,
Sorry not to reply earlier, cancers don’t fit anybodies scedule 🙁
“Stages” is all about where the cancer has spread compared to where it started, in short, non medical:
stage 1: cancer only affects the organ/spot it originated in
stage 2: cancer has spread through the wall of the organ
stage3: the same cancer managed to move to lymph ndes
stage4:the same cancer has spread to other organs
Important is to know that only a biopsy can tell you whether:
-your father has a new (stage one) cancer growing in his liver or
-your father’s ‘old’ colon cancer has made it into his liver (stage 4).
You (or your GP or your father’s GP, as hospitals talk faster to GP’s than to ‘people like us’) can call the hospital that did his colon and ask whether at that time the cancer had spread or not.
Did you catch it early enough? If it is a new liver cancer, prognosis could be more optimistic than if it is the 3 year old colon cancer.
Hope that helps Catherine, we are all listening, so feel free to ask or share more.
Hugs,
Kim
I haven’t been able to read all of this – – because at this point it makes me too frightened to do so. My father had his entire colon removed three Januaries ago due to cancer. Dad had some abdominal pain a month ago which then went away. It returned recently and he just learned last Wednesday that he has 4 tumors on his liver. I think the largest of the 4 is 2 centimeters in diameter. As this is Christmas weekend, he doesn’t go back i till Tuesday when he will have an extensive – thorough CT scan (I think that’s the one he’ll have). This early in the game we do not know much. is there a stage system for this cancer and what stage is Dad?
How quickly will this bastard (the cancer, of course) progress? And since he didn’t have any other symptoms, does that mean we caught it early enough?
Is anyone out there listening???
Catherine
Kim, thank your for the very nice comments. You are right, I think Ray was watching over us the day we brought him home. I think he was happy that we were butchering that pig, something he would have loved to have been doing himself, and I am sure it wasn’t quite as good as he would have done it. But all the same, that is what made him happy. My mom will be OK, and we will all be there for her. She has so many friends and family, she is very fortunate that way. Ray was really the only dad that I ever really knew, and I know that he loved me very much as I did him. He will be missed but I am trying to focus on the wonderful times we had, and trying to keep those good thoughts in my head. I know at times it will be hard to deal with. I hope that all is well with you and your family also. Taking it one day at a time is all we can do. God Bless you and yours. Linda
Kath-e, thank you so much for everything you have shared with me. You have no idea how much our conversations meant to me. It really did help me get thru some of the mystery of this terrible disease. It was both comforting and saddening to hear your story. You have been thru so much, more than anyone should have to deal with. This site and particularly you Kath-e helped me understand what to preapre for, how my step-dad must have felt and what I could do to make things somewhat more bearable for him. My mother was so good, for all the time he was bed ridden, she took such good care of him, he never had a bed sore, and she cleaned him up immediately when all his bodily functions had failed. She was wonderful, and like I said before, the hospice was a God send for us. I know some people have had bad experiences with them, but we were lucky to have received some excellent people from hospice that really did become family. They cried when he died and they attended his funeral too. What unselfish people that these people are. I will continue to come to this site because I am also happy to have met you, and I am not ready to say Goodbye to you. We will continue to talk and maybe help each other thru this site. I wish I could have met you in person. I am usually a pretty good judge of charatcter, and I know for sure that you are a courageous and inspiring woman. You are so brave. I really do appreciate having you as a friend. God Bless you and your son and family. Linda
Dear Kath-e,
Thanks for sharing, I finally understand what you are trying to say and how I didn’t explain me well.
2 clarifications:
1. I would have loved hospice to be like in your experience, so I advice all to contact hospice immediately and pray that all get the response you get. In our case: hospice showed up on our doorstep long time after father passed away. And the social worker of the health care insurance was not at all ready to give any help.
That’s when I say: “you need all the help you can get”, especially when you can’t rely on professional help like the one provided from hospice.
2. I apologize for having hurt you. I see now the sensitivity when I say “you need to do everything right in order to get cured”. “you” is not ‘you – Kath-e’. I should rphrase myself: “everybody and everything involved” needs to do everything right. In your case Kath-e, you surely did and still do everything you can, however the doctors have chemoed you out and they won’t let you into medical trials. So the medical world hasn’t done all they can, just like in my father’s case the medical world didn’t want to do a virtual colonoscopy when the normal colonoscopy couldn’t reach the entire colon due to ‘some obstruction’.
In the end: both the medical world and the expertise/experience of hospice should come together and work out how a person diagnosed with secondary liver cancer should cope with the disease in the best way possible and take it from there. And the medical world should have an extra look what the few survivors have, do or receive in order to find a cure: most likely an holistic approach in stead of trying to find “one miracle potion.”
I have no reason to judge you Kath-e, on the contrary: I am happy that finally a patient speaks out and shares her point of view first hand.
Thanks for using your energy to share with us and again I apologize for not having explained myself better.
Hugs and God bless,
Kim
LINDA…i hope that your able to read this bec a lot of notifications that i have received are all about a couple of words and<>and whatever nonsense ..so i hope you really understand what im talking about…linda im so sorry for the pain and suffering you all have been through…im sincerley sorry there wsnt more i could have told you but with what i did say i feel the quality of conversation that we have had was great and again its not the quantity its the quality…your the best and my prayers will be with you and your mom forever…it seems as though there are so many caregivers just want the reward or should i say they want to be recognized and its sad bec its for all the wrong reasons…i know you went through a lot more than even i can imagine but i know in my heart you did this not for recognition but for compassion from you and your heart and your feelings and yes you should be commended and im so glad that the suffering didnt last long but im so glad you were happy with hospice bec when i came on this site kim and some of her buddies didnt like hospice and what they stood for however i found them to be like a new found family for me …they were great and im glad that you found the same to be quite true…but remember you will always be able to still come on this wonderful site and you will be able others with this ugly disease and you know it will make you feel so good for what you have done…just little tidbits you may be able to pass along…your strong and very courageous and will continue to do so bec your mom needs you now more than ever but this site may even be able to be of use to her in the same way in sharing…when i first came in this site i was frustrated and angry and desperate for answers and on and on and what i found was a lot of arrogance is strogly felt..i have been brought to my knees in tears on things were said to me and i especailly found kim the owner of this site to be well agitated bec of what she probably went through however i found her to be very judgemental for example she told me you have to do all things right etc but she knew there was nothing that i could have done to help in any way bec of cancer in my lymphatic system i cant fight off infection and there arent trials for me and i cant have chemo bec ive been chemoed out …to much heart damage and so all kim did was call me on al the right things to do in order to survive and she put hospice down so much and me for that matter…hopefully ill be back again linda and ill still be here which im not really counting on ive got 4 weeks and one day to go on my date of expected death…im very sick but that will come later …you need to get your rest linda as i know this has taken a lot out of you and your mom…im glad for all of you especially ray s suffering is over and hes in a better place where we all will be one day (well most of us)…but pls know that you did the right thing by calling them bec they are about the living and not the dying they are about quality of life and not quantity and yes its amazing and you know what i bet this isnt the end of that either oh no im sure you will get another call cuz they do consider to be a part of your family!!!
so..may all your prayers and suffering be over and now it is time for you and your mom to start living again ..take it one day at a time to care for each other and pls know that if you ever need to talk pls call hospice whether that need is tomororw or five years from tomrorw …they will always be there!! linda its been a pleasure to have met you and remember always you have and your mom has done what is right…thank you god bless and prayers love hope and life to you both and your families…thank you for sharing with me it has meant so much!! your the best!
True enough Linda, there is lots of comfort knowing that Ray’s suffering is over. He must have smiled seeing how you guys tried to do what he does best.
Without Ray, your mother lost a rock she could lend on whenever she wanted for whatever reason. Keep an eye on her every day, no matter how strong a woman she is.
I wish your family has many more happy gatherings to organize more wonderful experiences. There will always be tears, but it’s great that you can add some smiles to keep a healthy balance and carry on.
Lots of hugs and blessings to you and your family Linda,
Kim
Thank you Kim for your kind words. We are all helping my mother get thru this sad time in her life. She is a very strong woman and puts alot of faith in God. He has been the one that has helped her get thru many hard times during her life. We are all pulling together as a family to help each other go on with life without Ray. I think she does find some comfort in knowing that he is not suffering anymore or lying in a bed helpless when he has always been on his tractor from dusk to dawn. That was his whole life being a farmer, butchering hogs and smoking meat. In fact, we did something a little different for his funeral. The day before the funeral he was layed out at the house, and we butchered a hog and smoked a ham with just the immediate family. Many people thought it was morbid, as I did at first, but it turned out to be a wonderful personal experience for the family. It was tastefully done and we all got to pay our respects individually without the other 600 friends of the family. We got to console each other and eat together and celebrate his life as a family. I would not have wanted it any other way. And the funeral was wonderful with some of his close friends standing up in chruch and sharing a wonderful, funny, or sentimental memory they had with him. I am sure he was looking down at us and just absolutely blown away at how much love there was for him. God Bless you and yours Kim Linda
Dear Linda,
Our deepest condolences to you and your family.
Do take care of your mom, the ‘aftershocks’ for the caregiver and partner are as bad as the disease itself.
Kim
Hi everyone, Linda here again. Well, as I said in my last post, my stepdad was given 2 weeks by the hospice nurse. He didn’t even make it 3 days. He died on August 18th, he could not breathe, eat, drink or communicate anymore. He is at peace now, and we have accepted his fate. He was a very well liked man with many friends. He contributed alot to the community and would give you the shirt off his back. Over 600 people attended his funeral. This was the first and hopefully the last time I have ever seen someone die from this horrible diesease they call cancer. It is a learning experience and it is also a very hard thing to watch someone go thru. Kath-e, my heart goes out to you and your family. I am still praying for you and your family for God to give you all the strength to get thru to the end. My step dad was diagonosed in January 2010, and lost his battle in August 2010. It went very quickly, but it seemed like a lifetime of watching him suffer and melt away to nothing. I only hope that someday they will find a cure for this devastating disease. But Kath-e is right, there is no cure right now, at least not for secondary liver cancer. He fought it tooth and nail, and still lost in the end. I agree, hospice was absolutely wonderful, they were a huge help to my mom, and they still call and offer their help to her. This site has helped me alot too, especially Kath-e who has always told it like it is and was right on with everything she said. May God open his loving arms to you Kath-e on your journey to heaven. Linda
Dear Kath-e,
2 things:
1. Read this blog about another metastatic liver cancer survivor CJ at http://shoppingkharma.blogspot.com/ : that’s why I keep on saying there is or care or cure:
Doctors/people who don’t want to learn from the survivors will keep on using the standard prognosis: metastatic liver cancer equals to a limited amount of months to live.
CJ’s blog is a crude – adult documentary of her life, as she says it like it is without any sugar coating.
2. Most of us reading the website here, are caregivers with the questions:
Like you say: I don’t have the cancer experience, I am ignorant and I even make you more sick that you already are. That’s why I ask you – our only contributing person in hospice – to share with all care givers : "what does quality of life mean"? Kath-e: please help other caregivers so they don’t end up like me making you even more sick than you already are. Kath-e: please help other caregivers so they don’t waste time and know what to do to help their loved one.
Thanks for helping and sharing,
Kim
To set the record straight: I didn’t say you have primary liver cancer, I was talking about a book mentioning primary liver cancer.
dont know where you got your info from but its wrong ok…first of all i dont want you to assume that ive read anything bec i havent…and ya know i feel that it was very tacky on your part to do this to me…actually i think it was in such poor taste ild go so far to say your ignorant!
HUH and then you turn around and tell me im one with liver cancer as my primary…your a real character you are…i wish…however again get it and please get it straight this time ok…my primary is non hodgkins lymphoma…an incurable cancer of the lymphatic system of which mine is shutting down and quickly i might add…as its in my lymphatic system and on to the blood and on to the skin and on to the face and on to the bone and now onto the liver…you really know how to kick em when there down dont you!
ok so now we all know again secondary liver
also one more ignorant effort on your part i might add is that you talk about doing everything right…well what is right is that you make me sick!
for the final time even if i had and do do everything so perfectly right …it still isnt going to matter bec i have cancer of the lymphatic system…ok …are you proud of yourself again for dropping me to my knees in tears again as you always do…its a sin to hate but those are the only feelings that i have for you…congrats!!! you go girl!
your suffering in life hasnt even begun and when it does ild be hiding if i was bec you have a lot of making up to do for and that is just for those that know you…i thank someones god you and i have never met…so get your stories straight…stop with your little inuendos …have i made myself clear you ignoramus!! oh yes one more thing you really crack me up with your cure or care obssesive wording that you must now be hooked on …
get it straight …please not for yourself but the rest of us honest people…there is no cure not at this time…someday hopefully…so until there is… face it but pls stop asking a person what they want or what have they opted for bec your sickening and your words are worse…as if a person has a chance for cure…so why dont you close that big mouth of yours!
kath-e
KATH-E i was just disconnected but im back i must have hit a sore nerve there…i want to apologize to the rest of you for having to listen to the vicious words coming from that person…still i must find out who…i deserve to know whos stabbing me up and down….
now for the person who requested this info about hospice…im from albany ny and it is from albany and rensselaer county hospice! it took a phone call and they were there the next day….i will also say its the best thing i ever did bec they were a family to me which is what i needed from day one…they will help you with so many things and if they cant they will find out who can…they are wonderful caring loving and compassionate unlike the person i am asking to show their name…let the world see who you are and then let them read your words over and over again so that they can truly see you for who and what you are …which is nothing! one thing i ld like to add before i go actually two…ild like to thank all of you that have been kind to me and sharing…i just dont want to have a speaking relationship with someone who you think is on the same level as you are when in fact they are in disguise…evil is just as ugly as C and that is how ugly you are to!!!
to all of you who have helped me and prayed and worried or thought or wondered about me im still here but probly the way things are looking only about two weeks and im saying that by the intense pain…my inability to walk or move without strong opiods…the filling up of fluids in my body…the club feet and knees and legs i have encountered …the inability to keep the pain in control the fact that i now weigh after losing 15 pounds last week is 85…so ill continue praying for you all but not until i find out who that mouthy creepy vindictive bitch is! and its funny ya know i thought that you would have known better thn to degrade a cancer victim…your heartless…
all others thanks for everything and as i said as soon as i find out who that person is ill be back bec i dont want to sit here being in conversation with someone who is belittled me to this point. and yes cancer victims can get stressed out so can anybody but that is not the reason to say that they cancer victims can be mean and that is why they might say something out of character…well im not using or lookin for any excuses at all for anything as i dont feel i did anything wrong and im sure i was totally justified in calling her a vindictive bitch…see for yourself find out who they are and jsut read what they write….hopefully ill be back god bless all but one!
KATH-E HERE AGAIN….hi all all my prayers are with you all…
LINDA…i just wanted to say to you its great when you see the person attempting to be coming sronger…maybe a little appetite…seems as maybe in a short time they do appear to becoming somewhat in a better place…
pls dont be fooled….this disesae is so ugly and the tricks that it plays are even uglier…
that is satan setting you up for the big let down…
dont fall for it…ive been told actually ive lived it…bout a couple of weeks ago or so i was in mortifying pain…had pain killers but refused to take them bec i was tired ofbeing called a drug addict…one day i couldnt take it anymore…not being able to walk without taking morphine or methadone first….well i made a big mistake thinking i m feeling a little better after taking meds and its the only way ill get through this …but ive only come to this conclusion after stopping meds and then when unable to crawl to bathroom i gave in to the meds…but it is ok bec even though its not a life its all i have left right now…but i wont befooled…couple of weeks ago when i couldnt walk then took the morphine and 15 minutes later i swear to you i could literally dance around my apt totally pain free…i was washing windows cleaning like it was the springtime…but…when the meds wore off…so did my life….what im getting at is hospice taught me that you will have days that you feel you are in remission strangely enough…and then the meds wear off and so do i….accept it for what it is but dont be fooled it unfortunately will be shortlived…however when times are good…let them be…just know ;it wont last …my prognosis date is 10/2…my 59th birthday…i dont feel that ill be around for it however as for the first 4 months it was almost like a dream but unreal…whooosh!!! just like that it will and can change…just be prepared…
i find myslef being in good actually great space about this entire situation…i have to be as its the only way ill get through it…i read on a site once recently about this man who had mets liver…he had been feeling so so…one day he woke up beat up his wife of 25 years and then wentinto the yard and shot and killed the dog went back into the house laid on the couch and died….the day before they had gone out to dinner and actually had a very nice time….
with a disease this ugly never let your guard down….
love you all!
caregivers…caretakers…families..friends…and yes even strangers.(ive met the greatest and also now have the greatest new family from “hospice”) neighbors….strangers and wellwishers…wishing you all the best in your courageous journey with your battle…all of our battles and may we strive and pray for the knowledge to find a way to kill this ugly “C” disease…we shall prevail in our strive to achieve this as im seeing progress now..new developments…even actual treatment…we cant go anywhere but up to the top in this war!!!
KATH-E here again…hello all and i mean all patients caregivers families…friends neighbors caretakers pls know my prayers are with you all!
im here with an update although its really not good…actually its down right ugly…just like the disease…well just a brief update of who i am …im a woman of 58 years of age with a son whos 40 his wife whos 40…my granddaughter is 22 my grandson is 15 and…my great granddaughter who is 2 yrs 6mos old….
i love them all even my little great grandd-daughter who will be born on dec 30 of this year…let me tell you…i love my family more than life itself and im hoping that my blood cancer non hodgkins lymphoma stage 4b, follicular cell b which has spread to my bone marrow most recent the bones, this cancer type is of the lymphatic system as well so…the cancer itself is in your blood everywhere whereby the blood and lymph systems allows the cancer to spread quite easily…
my most recent diagnosis from a biopsy of my liver on 3/31/10 is malignancy in the liver which is liver mets…i did two years of chemo a very strong chemo bec of it being the lymphatic system it had to be..the chemo took 60 percent of my left ventricle in my heart which doesnt allow me a chance at any other chemo at all for a regimen for me…
the real sad thing is i was transferred to this dr in the albany ny area who was ahead of oncology in a major hospital here…he became my dr in 2007…i immediately began asking him to allow me a chance to have a chemo agent which is a monclonal antibody and this drug shows great promise with other cancers as well….
he questioned me as to why i wanted to continue with treatment “maintenance therapy” which just helps to keep things in check …i further explained that i was not in remision and never had been…this onco laughed in my face and said honey you have enough chemo in you to last 5 people a lifetime…he furthered by saying that my dr had in fact given me 3 times more than i should have had…
sigh…so for the next two years i had bloods drawn continuously…once you have cancer seems you learn to know what the blood counts are about and what to look for etc….i just got sicker and sicker…nauseous all the time constant belly/ abdominal pain…bone pain….in fact ild say my white count couldnt get up over 2.7…ldh very high…platelets were very low and the funny thing was that the lymhocyte level was like 65 percent…..wowowooww…..
i just couldnt imagine how this just continued to go on and on and on just waiting and watching my dr would say….i think you should go and talk to your psychiatrist bec you are in remisission and have no cancer however he explained i was just obssessed that i still had it…FUNNY…i was in shock as again i just sat back being frightened misdiagnosed…misunderstood…and sadly mistaken!
i just thought to myself it has got to be me it does…so off i went to the psychiatrist again…he listened to me and all that i had to say and he felt that perhaps i was overdoing it a bit due to some mental health issues i suffered from..such as anxiety….mental anguish syndrome.. ptsd…ocd…bipolar…adhd…chronic depression…he to felt tht i had become somewhat obssessed with my disease….
however please keep in mind i have 3 brain diseases none of which are lymphoma or cancer but they were all delayed or a misdiagnosis which i am disabled from as well…i have a brain avm…sort of looks like an octupus growing in side of the brain…although i had complained of headaches since the age of 4 so that was 1955…i have suffered from migraines chronically and yes this is 2010 but in 2002 i went to the hospital and demanded that they do something about the head pain…they wanted to put me on medication bec they felt bec i had been molested as a child this was my way of acting out…HUH….i got admitted in the medical center and low and behold there this thing was comfortably resting in my brain…well as a result of that bec all those years went by and they couldnt find anything wrong this thing grew and grew and grew and now when they found it nothing could be done to fix it…but as a result of this im now an epileptic and suffer from chronic seizures…as a result of the brain avm being to large surgery wasnt an option…craniotomy wasnt either bec the avm was to big…that left a procedure called embolization where they go into the artery in the groin with platinum and titanium coils and attempt to manipulate them all the way to the brain and then insert those chemicals and glue them into the avm so it woudlnt rupture…when all was said and done the dr told me a wrong sneeze…a cough… laughing to hard and on and on that all of this could produce my brain avm to errupt causing hemorraghe stroke and or both…well delayed diagnosis yes it sure was that was just the beginning…
so when the dr gave me an mri or/ct scan of the abdomen something showed up…but you know what yup here we go again…they said it was like a fatty tumor in my liver and also said that its very common and nothing to worry about at all…
really…well ok ill buy it…so now i go to see the neuro-opthamologist bec im going blind bec of the avm in the brain and it requires a certain type of eye dr…wheni went to see him he tested me and also ordered ct/mri of the brain to be sure that they could try to find out the problem and why….but primarily he had to be sure that there wsnt a bleed in the brain…so…off i went for the test and later that week my neuro optha called me and said it was urgent that we speak so i thought to myself oh boy not again…well when he called the hospital to have the results sent to him they mistakenly sent him all of my scans….
now…i thought no way could anythng go wrong now well sure enough he tells me to call my gi dr right away bec he said that they accidentally sent a scan by mistake to him and it showed this growth in my liver!!!!!! he told me it was quite serious at that time…well that was in 2008 and at that time until nov 2009 they just sat and watched and waited to see what this thing was gonna do yes WAIT AND WATCH….well in nov 2009 this thingy in my liver had grown they rescanned it in jan 2010 and it was even bigger…another scan in mar 2010 and then came the biopsy on 3/31010 and on apr 2 the report was sent to my oncologist that yes there was a mass on my liver and it was malignant…
hmmm now what is the oncologist going to do hmmm…well ill tell you im sure he was ashamed and embarassed bec it took him 3 weeks to call me and let me know that i had metastatic liver cancer with the primary being lymphatic system-non hodgkins lymphoma…it then traveled into the bone marrow and now most recent the bones…actually my primary dr called and got the results of the biopsy and he is the one that gave them to me….my oncologist told me the cancer had come alive and was in the lymph system…bones…and apr 2nd it was my primary that gave me 3-6 months and it was my primary that called hospice and told them about it…hospice was at my house the next day! and have been every day since!
so now when i went to see the oncologist i told him…all i asked for was a maintenance plan of rituxan as i knew it woudlnt cure my cancer but i just was hoping to keep it from getting worse as i had heard the blood cancer i had was serious…i asked him over and over again….why didnt you just give me the maintenance plan three years ago when iasked you however all you did was intimidate me and make me feel i was an imbecile imagining im always sick…SIGH…well
it was at this time that i became introduced to this wonderful web site….i was so scared…i couldnt trust drs no more…i wanted to commit suicide bec i began to really feel that maybe i was crazy always imagining im sick….then i began to see what this liver mets was…that…is my story less a few minor details…
to the point…i shared a lot and learned a lot right here yes i did…and there really isnt much good most of its ugly but sharing is the only way trust me….
first of all dont be shy…and never forget the golden rule…you must come out of denial about your disease….yes its nice to dream and want and not to have to worry….but with this disease and its gross way of bringing us to our knees you have to be out of denial yes thats right…face it…face it with all you got!!!
there is no cure for liver mets….some are able to have sometype of treatment however treatment at this time doesnt render cure…im sorry…so all face facts and begin living….call hospice they will at least show you the way….they will help you and for your info their motto is hospice is about the living…not the dying…hospice focuses on quality of life…not quantity….they are very real people who do care however they can only do so much also…however local agencies and hospitals or health care agencies and they will help when the tough really gets going…dont keep it from the patient…dont give them a false hope…dont tell them it will all be ok bec it wont be….not yet only in time…but ill tell you
hospice right now and since day one has become my family…they care about me and how i feel…its wonderful…they care about me!!!they try to allow you to do all of the things you want to do …they want you to have a quality of life nothing more nothing less…
about this disease…face it…call hospice they are a step above the rest…if you think you can be the only caregiver your wrong…it will take your life from you dont let that happen bec you need to remain strong for the patient…just remember you cant do it alone…you will learn just as i had to but i want to wish you all seriously….many prayers and well wishes…you will find yourself in a very stressfull situation with this disease…
update update….allow me to plsupdate my situation now with you all…thank you
well ill be honest the first four months went by quickly and i will honestly say i thought all the time how did this happen what do i do …oh my god…its such a devastating disease…on apr 2 my 6 month sentence was handed to me…wowo
now allow me to tell you what has changed with my situation…pain i used to say where is the pain wow i cant believe it no pain…huh…well allow me to correct myslef…morphine for the regular pain and liquid morphine for the breakthrough pain…oh boy every week a new regimen of opiates to try and control the pain….now the lymphoma has spread to my skin and my face my body has sores on it all over…i look like someone who never bathes and has scurvvy or something…this sores on my skin ooze a liquid…this is all the blood cancer kickin up right now…chronic night sweats….chronic pain in my liver and pretty much the entire abdominal area…ascites…well that is a nice word however its ugly just like the disease as well…its fluid…for me when i wake up in the morning or from a nap i cant stand up i am in such pain….my feet are like clubbed feet and my legs are like club legs and my knees are like clubbed knees…the fluid as ive been told is bec now that all the cancer everywhere is alive….i have to literally drink morphine and about 15 minutes later im able to get up and walk but very slowly….the pain in my legs are unbearable…then the pain meds stop working…just when you thought you had it made…
now another regimen of opiates…right now im on methadone can you imagine….i cant as that is a replacement drug of heroin…….oh boy what the hell…the pain…vomiting heaving over and over…methadone 6 tabs daily morphine for breakthrough in pills of 30 mg.@4 times daily….
now the opiates are making me literally sick to the point im very weak…no appetite and if you try to force yourself you will vomit…with the liver swollen there is no room for food and soon this little appetite will be gone forever as im understanding thats next….the fluid has worked it self all the way up both legs now…my lymphatic system which is cancerous isnt able to fignt off any infection has shut down…the lymph vessels arent working to carry the lymph throughly through your body right now my skin is so tight cant barely move…my skin burns terribly continuously but tht is from the non hodgkins lymphoma….my legs from he botom up are getting to take a shiny shape and now the lymphoma is in my skin and on my body like my face…i have all these little nodules small like a pea but they hurt and feel like a real hurting pain…ive developed some lymph nodes in my head im just hoping its not in the brain….
no matter where you go people are always saying oh my god look at that lady ughh…or they say my god arent you skinny enough….if they only knew about the suffering i have inside that will never go away….i also have lymphoma around my eyes all these little pea size lumps…sickening…burning….chronic itching tht cant be stopped….you can actually see the cancer eating the skin right off my body…
now that this has spread to the liver theres more to tell…no appetite..vomitting violenlty..heaving…unable to sleep bec of the pain….liver feels like a knife is right in it…i cant stand long couple of minutes and the drs tell me it will not get any better…rightnow the toxins are beginning to move to the brain and yes you can tell as i am becoming confused and have difficulty focusing breathing is labored ill say and its a life ofwhich you cannot live wihout pain meds…disgusting…i look at myself unable to walk or basically move until i have methadone @6times daily morphine @4 times daily…anddddd the sickness you get from the pain meds…at least if i take the meds then i can function…walk clean house do dishes etc but as soon as the meds are wore off…ouch…..i seem to notice every little thing and ya know it seems all those little things are just a sign of more ofwhats in store for you…my hospicee nurse and my hospice dr both told me this week that my cancer is acting up quickly and they did say we will have to get ready for the next chapter which i hear is ….this is why i feel they are saying im about to meet the liver mets head on….
hospice told me…i dont know if this is meant for my situation or all…but they said this disease is so debilitating that you wont beable to walk on your own if ever again at all…you will not eat again….drinking will become a problem as well bec total dehydration sets in….they told me the toxins will take a person to different lengths…some can just lose their mind….not knowing anyone …confusion…coma is possible from toxic shock to the body by the unability of the liver to filter properly….the body doesnt know how to react anymore to anything….it is possible that you will notknow anyone…total states of confusion..mental duress…opiates will be used for the pain and yes they do work…it just takes getting the right regimen….they say you will not be able to control bodily functions….they say it will all be so fast but i guess never fast enough…
me i cant walk without morphine and methadone andthey make mesick…so now what…hmmm…all i know is i cant sleep and its not bec im afraid…im not…i think its my nerves such as fear of the unknown….when will it happen and how and when and where…hospice assured me that they will give me the quality of life i deserve and they will strive to keep it that way as long as possible…and when it starts to get tough and they tell me im not even there yet there will be so much to be reckoned with….well this 85 pound body is weary now hopefully ill be back….if not my prayers are with you now and always patients caregivers…all…hospice told me that qualilty is first and we all deserve our dignity andthey also told me comfort measures will always be in place whenever needed….
dont be scared let go come out of denial and enjoy that quality bec what little is left you deserve it!!
thank you all
Dear Linda,
Our father had similar symptoms you just described: not recognizing new faces, as if the short memory is gone, eating less and less, sleeping a lot, talking in a way that makes at first no sense, but when you think about it, sometimes he was answering a question that was asked days ago.
Seeing things that are not there: in my father’s case those things were extremely scary for him that the doctor prescribed risperdol or risperdal (kind of haldol).
Once in awhile, he seems to recognize people… the last day of his life he had a lucid moment in which he grabbed mom and said: if I had to do it all over again, I would do it again with you.
Lots of hugs and strenght to you and your family. Do keep an eye on your mom: she could be running on adrenaline now and will need your support for a long time to come.
Hugs and prayers,
Kim
Linda here again, well it is getting down to the wire now. My step dad took a turn for the worse about a week ago, he doesn’t kow who anyone is, he does not eat anymore nor can he swallow anything. He cannot even drink out of a straw anymore. He sleeps all day, and talks about things that make no sense. He sees things that aren’t there. Once in awhile, he seems to recognize people, but that is very rare. He does respond when you say good morning to him, or if you say you love him he tries to give you a half smile and very softly says I love you too. He is spitting up bile from the liver now, we can only give him water from a sponge cuz he cannot swallow without choking. Hospice is giving us an estimate of 2 weeks left. I don’t think he will make it 2 weeks, but then again, we thought we were going to lose him over the weekend, his breathing is very labored, his urine is extremely dark, he is in the beginnng of shut down. This is so painful to watch, espcecially for my mother who is caring for him 24/7. The next time I update you, he will most likely be gone. He is really gone already, only his body is existing. I pray that God takes him soon.
Sandy,
We are not giving up, my step dad was fighting this all the way from the time he was diagonosed, he went thru two different kinds of chemo treatment, which made him sick as you probably well know. He was so weak, he could not even get into the car anymore. He was tested after the treatments and the cancer had spread throughout his bloodstream, it is getting worse, not better. The chemo did not help at all, and the doctors had told him taht initially that it most likely wouldn’t. But he was determined to fight for as long as he could. He cannot fight anymore, he is too weak, he cannot even sit up and has no control over any of his bodily functions. He cannot even feed himself anymore. I was so proud of him for giving it all he had, but now he has accepted his fate. And we have accepted it too. All we are doing now is trying to make him as comfortable as possible. He is 74 years old, and he is experiencing alot of pain now and getting morphine on a regular basis. This has been an exhausting experience for my 79 year old mother who has to change his diapers 2 to 3 times a day and do laundry all day. She does has hospice coming in, and they have been wonderful, and just this past week, she is getting some home care too to help her with chores around the house. It is such a sad situtation. I know that everyone’s situation is different, and everyone’s cancer is different. I hope the trial things you are doing Sandy will help you. You are still very young. I will keep you in everyone that is struggling with this horrible disease in my prayers. Kath-e, if you are still with us, you are in my thoughts and prayers always.
Question for Sandy:
What do you man when you say: "I see people giving up"?
As far as I understand Kath-e: she wanted to live, but she didn’t get a cure nor was she allowed in any trial.
At Linda: I feel that Kath-e repeated what she had to say in a way that will give us a better understanding in walking our path. As for how I understand Kath-e now, I summarized in: I’m willing to stay alive, if I’m able to eat chocolate ice cream and watch football on TV.
Kath-e made a strong point about hospice.
All I want to add to that and reading the above article: it shouldn’t be either only cure or only hospice. In order to make a good decision what a patient wants to do with his life, the patient should get advice both from experienced doctors and experienced hospice care givers. Unfortunately, now you can only get hospice if the doctors give you up within 6 months.
As with my father: one day he stopped updating his posts, but the love and care around him remained. I imagine the same is happening with Kath-e: it’s the truth we rather don’t face nor talk about. All our love and prayers to Kath-e, her friends, family and care-givers.
Hi, this is Linda. I was hoping Kath-e was had responded, I am now worried about her. I know she is quite sick, and probably unable to be on her computer. My thoughts and prayers are with your Kath-e. I read your story Sandy, and I hope and pray that this treatment will continue to help you. You are so very young, and I am happy that you are able to test this type of treatment for yourself. I turly hope that it is successful for you. Since my last post, my step-dad has started feeling some pain and his liver is startint to protrude from his stomach. He is on oxycotton and morphine now. It has not been real bad yet, but it is coming more often and more intense. My hope is that he will not linger on in severe pain for months on end. We are making him as comfortable as we can. He has not been eating as good as he was either, and his breathing is becoming more labored each day. He is a tough old guy, and I am happy to say that he has held on longer than the doctors had predicted from the beginning when this was all discovered. We continue to hope and pray that he will be with us for as long as possible, knowing that the outcome is inevitable. Our main focus right now is to keep him company, keep him comfortable,and always let him know how much we love him. I hope that I will be able to talk to Kath-e again, she was not doing so well the last time I read her post.
I am reading all this stuff and I see people giving up. I am 51 years old and have a husband I have been married to for 23 yrs and a 19 year old son and I am not giving up. Chemo did not work for me either so I am currently enrolled in a clinical trial. The drug I am on does not work like chemo. It was explained to me that each tumor hgas a switchboard called PK13 and 3 other switches under this one. This trial drug works to shutdown the PK13 which in turn will shut down the other 3 switches. After one week on the med, the brightness on my PET scan for the tumors went from 23 to 16. I will be scanned early Aug. to see if the drug is working but it appears to already be working. It is a clinical trial at Sarah Cannon Cancer Research Center in Nashville, TN and also at MD Anderson hospital in Houston, TX. The drug is not without side effects and it has been harder on me than chemo, but chemo was not that hard on me. Never, ever give up. I am a christian and and trying to trust and have great faith in the lord and his healing power. I don’t know what the future holds for me. But I am not ready to give up my life. I hope this has helped someone else. My cancer is secondary liver cancer with unknown primary where they have not found the unknown primary. It is small cell carcinoma and suppossed to be in my lungs and is not. I have never smoked so they say this came from second hand smoke. God bless each of you who visit this site. My hope is we all get cured from this dreadful disease.
Hi Kath-e, Thanks for the response concerning my step dad. I do want the whole truth, our family has accepted the prognosis, and we are just trying to make my step dad as comfortable as possible. He feels so much better since he sopped the chemo, the hospice people have been wonderful. I was just curious about why he has not felt any pain yet from the liver cancer. He did not have the stomach removed, he had the cancerous tumors removed and they did a bypass. The cancer is rapidly moving thru the bloodstream and the doctors say there is nothing more than can do at this point. He is not a candidate to even have part of the liver removed. It is too far gone. It is great to see him enjoying food again as when he was gettng the chemo treatments he could not eat anything. He was losing alot of weight, and did not want to talk to anyone or have any company. Since the chemo has not worked at all, he decided to have quality of life instead of quantity of life. He can speak more clear now and loud enough where we can actually hear him now. He has had no pain at all, but is bed ridden, and can’t even sit up he is weak. I guess I was just wondering that why he is so weak if he keeps eating good and is gaining weight. But he still cannot even stand up. He barely has the strength to turn from side to side. We are thrilled that he is not in any pain, but are wondering how long he can hang on like this with the last prognosis was 6 months to survive. It has been over 2 months now. We aren’t in denial anymore, but there is a part of me that is wondering if he could just get up and walk, maybe he would get his strength back. The hospice nurse says there is no point in him trying to walk, that even if he was able to take a few steps, he would no doubt eventually be bed ridden again. My attitude is if he wants to try and walk, why should we stop him. If that is what would make him feel better, should we help him with baby steps so that maybe he will be able to at least walk to the bathroom or walk outside to the porch. But besides the thought of maybe wanting to try and walk, he says he is compeltely content in the bed, and he is not bored, he is very peachful. And this if from an old farmer boy that stayed on his tractor from dusk to dawn, always busy all the time. Maybe he is accepting it better than the rest of us are.
Dear Kath-e,
3 question:
1. What does quality of life mean for you now?
2. How can I contribute in your quality of life?
3. What would you want others do so you feel respected and cared about?
Thanks, hugs and lots of love,
Kim
KIM & CHI….you two are a pair that beat three of a kind…no doubt…how can you say your not in denial when either of you know what to do…
2 Q’s==one of you allowed your love to enable another one of someones disease making their situation much worse and more dangerous…and you say its bec you care so much and at this stage so what…what is …..your out of your mind as that is pre-meditated murder and you say you can live with your decision….we obviously have different beliefs….yours being satan….
and now comes the other Q==how can you say you will let your patient drive whereever…whenever…and however…sa la vi! wow and to think that i come from your world no…jesus dont like you …either one….and i do;nt blame him either not one bit…
not to mention you would let an unabled-disabled person drive…now is that off of the cliff or what…wow we just may have a double murder here on our hands…..really sick!! another case of pre-meditation…
thank my god your arent my caretaker or family friend or neighbor…
so i say …..PICK YOUR POISON!!!
FOR YOU TWO INDIVIDUALS WITH METS LIVER CANCER IM SO SORRY…ILL PRAY THESE DEVIOUS BITCHES BECOME NO MORE A PART OF YOUR LIFETHEY WOULD BE BETTER OFF IN ADULT PROTECTIVE…AT LEAST THEY WOULD BE SAFE!!!
Sorry but true!
Linda…kath-e here…you will not like me bec i tell it like it is and that is how i see it…i totaly understand what your saying..i was given 3-6 months and right now im going into my 4th month…
ill tell you the first three were very tolerable to me and i can take pain…
however..nows a different story…yesterday i spent the whole day vomitting and that was with the best anti-emetics i could get….dry heaves…weak…hmmm…all brand new just since last month…so now i have actually lot of scratching from the non hodgkins lymphoma also from the morphine long acting and morphine liquid for the breakthrough pain….and now i can say i really know what those drugs do….however…tis only the beginning…my dr says my liver pain and abdominal discomfort will go nowhere…and one day those meds wont work either…he feels the sickenss is from the toxins of the liver filling the body and most importantly the brain…the cerebral portion and from the point its straight downhill….if you stay awake long enough you may realize tht your brain is fried and if you dont you will soon find yourself in a coma…and then the end…
so in just a short time you as the patient will not even know yourself…and thats it…your last breath will be taken and your pain finally gone…your life is now over….
hospice can be called as long as the prognosis is 6 months or less…and fyi…hospice is about the living…not the dying….its all about quality of life bec thats what hospice wants for you…to have the best quality possible for you….there very helpful in many ways…not to mention compassionate and caring in fact more than ive seen some families have….
just dont be in denial over this bec that way you can be prepared…you will need to be prepared…
but also keep in mind there are many other options as well such as aides…hospice (living at home)i will tell you this at this time hospice is a small organization but of great quality!!
so come out of denial…be prepared for the pain…and changing diapers is not the only thing to think about…yes and it gets worse every day…unfortunately its all to true…
C-is such an ugly word and so is everything that applies to it…however they say metsliver cancer is by far the worse!
my prayers are with you now and always
be strong or its you that wont make it!
sad but true!
Dear Kath-e, dear caregivers,
Kath-e : thanks for using the words “vindictive bitch”.
Caregivers please know, there could come a time when the anger – fueled by emotions caused by having cancer – will be thrown at you, just like the “vindictive bitch” that gets thrown in my face.
Like I said before: I am not going to be the referee here. And as owner of this site I could easily delete kath-e’s comment. But I want to share it so you all know: the patient can be as good a person as he or she is, the cancer and the failing liver can interfere and give you reactions that you would never expect.
In father’s case, we didn’t have any bad remarks towards us, as father always kept his anger in him.
Above you see the word ‘vindictive bitch’ which is nothing when you compare it to my uncle when his cancer took over he could scold his caregiver wife the whole night without her being able to put sense into it. When waking up the next morning he looked at her and said: “eh, you look tired as if you didn’t sleep all night,… oh no, don’t tell me I have been waking you up again scolding?” Sorry for that. But he himself had no recall of what he did nor said that night.
Kath-e, thanks for sharing. I don’t like to be called names, but I assume your experience will help all the caregivers.
Hugs,
Kim
LINDA…kath-e here hi im fairly new to this site with my biopsy of the liver on 3/31/10 results on 4/2/10 results of malignant mets liver cancer with a prognosis of 3-6-months…now after 3 1/2 months later what a difference…i almost thought the danger was over…
the worse is yet to come…liver pain from the swelling…edema from the feet ankles and up the lef so far..now the pain is so real and the swollen feet andlefs and the diminished appetite and all of the nauseau is becoming constant just when you thought how much worse can this get….
KATH-E HERE im sorry but im not going to believe that there is a cure because there is not…
great strides are being made but cure is a long way off…
however …please know i love you jesus and believe in you but also know that im not in denial over my disease and i know that is acceptable with and to you….thank you jesus
KATH-E here again…i know whos been writing these e mails even though your name wasnt left…again you make me sick…how dare you compare my faith and love for jesus and finally you found a way to blend them altogether…such as well if you say you believe and do… then you have to have faith…however i dont!!!!! what the hell are you talking about….cuz hell is about where your going to wind up because your such a vindictive bitch….
i believe in god however he can only perform so many miracles now cant he….he couldnt save himself from the cross and he paid for our sins…however only so many miracles are possible and with all i have told all of you over the last couple of months im sure you understand my point of view….which is to have faith is to believe…which faith i do have believeing i do have…the strength of the lord …and only the lord is capable of so many miracles….
KIM…YOU DO MORE HARM THEM GOOD!
Hi Linda,
My first question is: when they removed the intestinal cancer, was it removed completely?
As shown in Jim’s son survivor case: you need to build up the immune system as good as possible to have a fighting chance in curing cancer with chemo.
It surely helps to have a great attitude as well.
Pain will only be felt (in our dad’s experience), when the cancer is getting so big that it pushes on the other organs. It’s those organs that produce the pain.
Since my father had an unknown primary which therefore couldn’t be removed, this is all the experience I can share. Looking forward to read an answer from somebody who has walked a more similar road than yours Linda.
Hugs,
Kim
Would love to hear from someone on what you think of my step dad’s situation. I keep getting hopeful since he is eating so good now, hoping that maybe he will get his strenth back and be able to get up again. It has been 2 months since they said 6 months, still no sign of pain. And it has been 8 months since they originally said 6 weeks without chemo. The chemo never worked so he has passed the time they gave him. I know they can’t be exact on the time, but it seems he is really hanging in there. He has a great attitude too.
My step dad was diagonosed with secondary liver cancer, primary was small intestinal cancer. He had the cancer removed surgically from his intestine by bypass. Started chemo right away, they said only 6 weeks without chemo and 8 to 12 months with chemo. Checked after 6 treatments. Chemo was doing no good, in fact the cancer was spreading rapidly. Tried a different chemo, but only for 2 weeks and stopped. Lost alot of weight and was not eating. Very weak too. Now that he has no chemo treatment, has got back appetite and is eating very good, gaining weight too. But is still extremely weak and bed ridden. He is 74 and my mom is 79, and she takes care of him, he cannot get up to use the bathroom nor can he use a bed pan, so my mom is having to clean him up all day. Finally callled in hospice as they are now giving him 6 months, that was 2 months ago. I keep thinking that he is gaining weight and does not have anymore diarrhea since he stopped the cancer, he feels better. He has never experienced any pain.
Hi Kath-e,
Thanks for sharing!
About the books on this site: they are all with a money back guarantee: you can buy them, download them, keep the receipt, read the book and if you think the content of the book is ridiculous, you simply ask your money back, no questions asked.
The one you have read is I guess “my Victory over Cancer”: it’s about a primary liver cancer survivor, and as you mentioned: it’s much easier to survive primary than secondary liver cancer.
Also we keep on repeating that in order to survive secondary liver cancer, you need to do EVERYTHING (that’s in capitals 🙂 ) right – see the side bar – and start with believing 100% that you can beat the cancer.
Is that denial? If you believe in the Lord, then you believe he can rise from the death, so believing to survive a cancer isn’t that amazing anymore.
I do agree with you 100% Kath-e : the numbers are against the survivors.
It is up to every individual person to choose for cure or care. And you know the uphill battle yourself: you have chosen for cure – tried to get a clinical trial – and the medical world didn’t accept your request.
I don’t agree how the medical world, hospitals and politicians decide how much the life of a cancer patient is worth. If any patients/person’s life would be priceless, I am sure there would be a lot more healthy people on this planet.
Hugs and God bless and thanks for sharing 🙂
kathleen…kath-e here..thank you for sharing…pls know you can always ask me anything you want…ill always be there to answer and i certainly hope my answers will help you bec for most of us …sharing is the only real way to find the truth…im sorry about your mom and her liver metastases with breast cancer as the primary…it sounds like you need to be real about this as you are…its a ugly ..horrific …degrading disease…in fact ive been told your better off with liver primary cancer rather than metastatic liver cancer…there are so many more options…
i know what your mom is up against and with a son who is 40 yrs old and not handling my diagnosis at all very well but thats bec hes in denial and he feels helpless…
this is by far the best site you will come across…with me you will only get the truth…and not just what you want to hear…has your mom been given a prognosis…also..did you know that the primary cancer which with your mom is breast cancer…that has to be treated first before they can treat the liver cancer…
there are not many survivors to this disease as people usually die from it within one year of diagnosis…some sooner..and a few of the lucky ones are still able to drag on accepting chemo if its an option and for the most part i believe the only survivors there are …are those presently in treatment…youngish…more healthy than i…faith of a cure one day…and they are looking for a quantity of life and not quality…
for me life is about quality…not quantity! may i offer a suggestion for you as to where you may want to start and i beileve in my heart its a good suggestion..your county hospice…they are wonderful…they treat me as though they have known me for years and its like were family…its great…they will share their knowledge with you and advise you to so many things…pls know your also eligible to get home health aides that will come a few times a week to help clean up …do laundry..marketing…etc…hospice is for the living …not the dying…they have a focus which is providing the best quality life ever! they will take away your pain…they will help in so many ways…and they will become a part of your family to if you let them…
but fyi…mets liver cancer is about pain…getting worse all the time…your appetite will diminish little by little day by day…so will your liquid intake diminish as well…but as i said before your body is able to kick in at this time and take over and it begins to release differnt chemicals etc so that your pain is more controllable…and being as there is no room in your belly for food anymore bec the cancer will be pushing on the other organs causing eating to be a painful thing bec it is however when eating and drinking diminishes and these chemicals kick in your body will not feel the effects of starving as you see it and dehydrating as you see it but not as your mom feels it…
hospice will want your mom to lead an active lifestyle and do whatever it is she enjoys to do…bec the end is always to near and its better to get the quality of life for your mom she so much deserves than a quantity of life that she will never be able to enjoy anyhow bec she will be recovering as she goes through chemo and that is even if shes eligible…but what good is it if you cant be the person you want to be..and your life is filled with sickness and pain everyday…and no strength to fight off the pain or the reality of what your going through…since the first day of diagnosis…its all downhill from there…you will find every day is less than the day before…every day you will eat less than the day before and you will do less and less every day…and you know what …right now straight up all we can have is faith…and not be in deniable about this ugly mets cancer…however we must face the truth and the truth at this time is that there is no cure for liver mets cancer…there is only cure or care…so without cure all thats left is care…and one more thing…not sure how long this can take but someitmes its a very short time till death…most of the time i should say…and they say once the liver shuts down bec of the cancer it can no longer filter out the toxins and as a result all of the toxins go to the brain…the brain doesnt know what to do with the toxins and as a reuslt …the toxins take over the brain…some people become comatose…some appear to be crazy…some appear to be very confused to say the least…there is really no telling what will happen as the brain fills up with the toxins…and the body as well…its very overwhelming and i am so soulfully sorry for your mom and you and what your going through…
so right now come to terms with this so you can help your mom and you need to be strong emotionally bec you will watch her deteriorate quickly…and this is not an easy task…however one that must be endured…they say once the cancer has hit the liver …its to late then as it takes to long for symptoms to show up and thats the reason the liver damage has already begun once you have been dignosed…so think about it kathleen…and have faith and be strong…and pray…
pls know that ill be thinking of you and your mom as you begin your journey to ….if i can ever help you pls let me know…there are many nice people here and ive learned a lot…a whole lot….and this has helped to give me strength…however there are some on this site that dont want to hear the bad things that this mets liver cancer can do to you…and the way that it can and will take your life..but just remember they are in denial…and your not…
and then lets not forget the folks on this site im embarassed to say im on the same site that they are…only im telling the truth…they are tellling a story and who knows if its true…
all they are trying to do is sell you a book on how to eat!
SPARE ME!
god bless many hugs and prayers to you and yours!
kath-e
My mom just got the news of liver cancer. She had breast cancer ten years ago, then 2 year ago bile duct cancer. She can’t eat either. I give her glucernia drinks and she dose really good with those. It’s hard when she won’t eat, on the whole family. Thanks for telling me the body takes over. It’s good to know she isn’t starving.
Hi Kath-e,
Thanks for the small print 🙂
2 answers:
1. Nobody is prepared for this disease, nobody has learned in school how to deal with it. Only if you live it, you get to know it, but it’s hard for everybody to get through it.
Please talk to hospice how you can ease the pain for your son. What happens is that he wants to help to cure you, but he cannot. cure you. That’s the hard reality and it’s extremely difficult to accept. he is not angry with you, he is angry with the situation and angry that he has no power helping his mother.
2. Your body needs food. Our daily diet is quite rich, so we can do with less. But at the end of the day we need to eat something. Appetite will go down, so you have to get food that you love. Our last resort was giving our father “astronaut” food: those drinks that have high nutritional value and only will take little space in a swollen belly.
Practically you could tell your son what you can eat and what not, and if he does those shopping for you, he is helping you already more than he thinks.
Hugs and God bless!
kath-e here again…no capitals…i gotta q for you…my son came over earlier in the day with a meal he had brought over to me…i sighed as i knew i couldnt eat it…and he grumbled whats the problem now…i just looked at him and said my diet has changed and many foods were put on the list of not to…he bec very angry at me with me and to me…he started screaming you cant expect to live if you dont eat!! i tried to explain but to no avail…but according to what ive read and what ive been told it says that when the appetite begins to diminish and then completely goes away and your not able to eat at all…that somehow your body knows what to do so its not like your really starving yourself and its at this time that the body releases certain chemicals to your body to make up for the loss of food and eventually liquids…how do i explain that im just not trying to starve myself to get this over with more quickly…sigh…pls share with me something….
thanks again
Hi Kath-e,
Thanks for the non-capitals 🙂
I was one of the care-givers for my father who passed away with metastatic liver cancer.
The other half of the story: let’s start with side effects of strong painkillers: constipation. And the solution to constipation is exercise and ‘fiber + fluids’ or laxatives.
In father’s case: his cancer had taken most of the energy out of him, so it was impossible to do exercise.
As you already know, you loose your appetite, also due to the fact “there is no space in your abdomen” for extra food, and extra food means extra “stuff” pushing against your abdomen.
So laxatives is ‘the’ solution. The theory is easy:
more painkillers = more constipation, so more laxatives needed to counter that.
In practice it’s a constant try and adjust to the always stronger painkillers.
Everybody is different and the future cannot be predicted. Father didn’t have jaundice when he passed away, something you wouldn’t expect when you hear that ‘something is wrong with the liver’.
I have compared father’s progressing disease with a snowman melting in the sun.
Hope that helps, do ask more questions. If you feel like answering: may we know where you live and how you arranged for hospice, was it fast and easy to get them organized? Thanks.
Hugs and God bless.
kath-e here again…regarding your response to me…sorry about the capitals…
ok…so what is the other half…may i know?
thank you
god bless
hugs and prayers
are you a patient…just curious…thanks again for taking the time!
Hi Kath-e,
Thanks for sharing, why are you typing in capitals?
For sure there is an immense amount of pain. The pain you feel in the abdomen is caused by an enlarged liver pushing all other organs away, as if a car was driving over your belly. Bottom line however: the pain requires opium, and that’s only half of the story.
Lots of hugs and God bless!