woo-hoo! Merry Christmas! xoxox
Re: Multidisciplinary Treatment of Bile Duct Cancer (BDC) (4 replies, posted in General Discussion)
oooh it would be so cool to go..... but what would they do with lay people and our questions? are we even welcome or allowed?
... one more idea: zofran (ondansetron) comes in a melt-in-your-mouth form. it has saved me before. once i start throwing up, i can't take pills, so this another way.
thoughts and prayers with you this week, Lisa. *hugs*
I am so very, very sorry to hear the pain in your voice, and to hear of what you are going through. It must be just awful but I want you to know that I also thank you for sharing with us these things because I am the cc patient and the mother of three, the youngest 15. I will be leaving them. I need to hear how it will be. I can only say that I know you have all been suffering for some time and crying all the time as we all do and so I know the pain also that your husband must be in. I am so in awe of the worry and care you have for your husband and also for your children. There's no right answer here. Some will talk now, some will talk years from now. Some will share their pain and others will bottle it up or share it elsewhere so not to burden you. Some children will share your grief and some will try to carry you. There is no right way to have grief. You must follow your instincts as a mother, that's the best thing you have, your lodestar, so try to trust that. You will be in my prayers.
oh, this is good news. anytime you get of tumor material it is good news! hugs!
yay kris! I want a cocktail of whatever you are on - on the rocks right away!!!
Re: Received bad news yesterday and looking for advice (26 replies, posted in General Discussion)
I too, am a patient of Dr. Kato's. He did a partial resection for me in January followed by y-90 in February. His IR guy is the best, Dr. Sperling. They are a great team. I think if he did not suggest y-90 there must be a very good reason. It does not cure the disease either, merely puts it off till midnight, like Cinderella. It is also not at all easy on the body. What is hard to take is that this is not really a "re-occurrance" like we think of the word, as in went away and then came back from nowhere -- the disease has microscopic origins that we cannot see until they grow into measureable tumors. Your Dad's whole liver was already "seeded" with cc cells before the surgery. So the "re-occurrance" rate is a bit misleading. Dr. Kato was always very upfront with me that the surgery he was doing for me was palliative, to get rid of the one big tumor so I could fight the disease more effectively. I would be less than honest if I didn't say I was hoping for a cure or a complete remission or whatever. We knew there was disease left in the liver but Dr. Kato wanted enough viable liver tissue so I could go on fighting. So resection is only a cure if the disease has not gone to mets to the liver, and by that is meant the individual cells that we cannot see and do not know if they are there or not. But if you have even one tumor plus one tiny little other tumor, it has already spread. I am so very sorry about the roller coaster of hope and despair that that you have had to travel. Sometimes I think the emotional toll of the disease is the hardest. I hope this is helpful and not too depressing. Call me if you want to talk about kato and team. I have been there and still consider myself a happy patient of his. 202-907-3568 Holly
yes, yes. I have had these kinds of fevers. But the cause was only once an infection and they were not even entirely sure of that. If a round of cipro does not cure you they will just say fever of unknown origin. It has been explained to me that it can also be the result of tumor necrosis factor, like after y-90. And yes, these daily ups and downs can easily happen with chemo too. I only get worried if I go over 102.5 but that is my personal experience only after a year of fighting this cc with surgery, radiation, and chemo. Usually they want you to call if you hit 101.5. I also get worried if the fever is there first thing in the morning - - for me it's always afternoon/evening and gone by midnight. wierd, but the body has ways of dealing with things. I never take anything for fever, that's just me again. Fever can be exhausting -- take good care of yourself and try to nap them away. Good luck. Holly
Percy, you are one of my favorite people in the whole world and I love your posts, love the articles you find and post for us, love your knowledge, compassion and humility .... I am so sorry that anyone would ever upset you!!!! You have been both a godsend and an inspiration and I think of you all the time. Just know you are beloved, ok?
I cry all the time. It is normal when we do not want to die. I cry and then get up and on with it, don't let the children see me cry! I do talk to my lovely husband and most wonderful caregiver but then we just both cry. It's pathetic! and totally normal. So cry away. I can't talk about dying without crying for the children and husband I leave behind, so I don't talk to anyone really except maybe God and the wind. But....... I have made a couple really good pals with cc from this list and elsewhere and there is nothing like sharing with them -- they are fighting the same fight. It's a real bond here. Please keep writing us!!!
ps, you should definitely post a new topic of your own so people will see your post -- it is kinda buried here under someone else's post.
Dear Sister, I can only say the same as others will - - you should get a second opinion. There are many different chemo regimens and there are ways to deal with mets. I would make it top priority to see another doc or two. You will be surprised how helpful it is. Let us know how it goes for you. So sorry for you and your sister that she is suffering so....
I was diagnosed Oct 2012 and did 4 rounds gem/cis and had great shrinkage. But the truth is that once there are mets to the liver they will always be waiting. I did y-90 and resection surgery last February and blasted every tumor out of there. But about 7 months later I have a whole new "crop" of little tumors. That's what the problem is with this disease. I don't think I have ever heard of it going 'INTO REMISSION' but maybe someone out there knows more about that. The main thing to do is try to keep your general health up, the tumor burden down, and keep the cc from going anywhere else. But sadly, mets to the liver mean it is microscopically all through the liver already. Chemo regimens can work from months to years depending on the person and there are different kinds, radiation can kill and shrink tumors, and surgery can de-bulk the liver of tumors. The newest things and no doubt the wave of the future are the targeted therapies that try to get in the tumor's way of growing and building its blood supply, or just growing in size,......or things that actually work with the body's immune system. There are lots of clinical trials, but we are just not quite there with a cure yet, though ever-hopeful for a miracle....... Holly
You have been a wonderful, amazing, loving daughter. I am so impressed with the care and love you have shown your mom. yes, second opinion. yes, honesty, very gently. I have 3 children and while they want to be informed and "in the loop" they don't actually want the bad news straight up. I have to be very very gentle in talking with them. It's a fine balance. Good luck. Keep us posted, we are listening.
CC can grow very, very fast and it can be extremely slow-growing, almost stable. Mine is horribly virulent and fast-growing. As one of the mixed hcc-cc type cancers, it's really, really ugly. My ca 19-9 went from 400 to 20,000 in just 3 months and went from no visible disease to three 2 cm tumors and "innumerable" smaller ones in the same time.The only thing you can count on is that everyone will be different! Holly
I cannot come on the discussion boards every day - it is very hard as things worsen rapidly for me. But I am one of those very "real-world" people who has done y-90 and have written here extensively about my experience, which was good. In fact I am considering doing it again (you can only go twice, total) because it bought me 6 months of wonderful life. Please do not be angry. We are all doing the very best we can with an extremely difficult disease that has no real protocols for treatment and every case seems so different. If you want to message me privately about y-90 or if there are just questions I did not answer for you, please write again. But don't be cross. It is hard enough to die of this thing, as many of us are, while we try to still search for answers, help, and solace, without letting a lot of negative energies onto these lovely discussion boards. Holly
Started chemo wednesday! Actually feel better every day I get away from those surgeries. Lower dosages of gem/cis than a year ago -- we might build up but for now I am happy to be back on the chemo that worked so well for me before. Thank you all, my friends, for being here through thick and thin. I cannot express enough my thanks and gratefulness for this place of love and healing. -Holly
You have so much good advice here already, I will just say we call it "miracle-gro" in our house (not miralax) an it works for me along with dulcolax. Someone told me the other day that cancer is the enemy and chemo is seal team six. Well, gem/cis is THE front-line number one chemo for CC. I pray that it will turn the tide for you!! Also, have a wonderful time in the sun. That's good for you too. Lots of love, Holly
I had y-90 last februrary and there's a long post about it on here if you follow my posts. I love the stuff. It gave me 6 months of low markers and for the most part feeling well. The only thing is I had fevers two months later -- most likely brought on by tumor necrosis factors. Also beware, it's a little like Cinderella.... at six months your time is up. My cancer came roaring back with a vengeance. You can do y-90 twice, they say. I would not hesitate to have another go when the time is right. Also, it is powerful. You don't need chemo when you're on it unless you want the systemic treatment because the radiation is killing off lots of the liver cancer.bSadly, once you have mets to the liver, they will always come back. Not chemo, not radiation, not nothing yet can kill the seeded cells off for good. Still, the good times this past summer were a goodsend to me. Hope everything is going well for you guys. Keep us posted! - Holly
Hey Jules, thinking of you and waiting with you for my results this past week. So happy to hear you mother is feeling better on chemo. Hang in there, friend! <hug> Holly
Thank you for the pep talk Lainie -- you are one of a kind!
So here's the deal about platelets, everybody, from what I have learned as a patient: 100 is about the minimum for most chemos and trials. Below that, no go. Any liver disease (cirrosis, hepatitis, cancer) can result in hypersplenism - enlarged spleen - and what is happening is the blood product (white cells, platelets, etc.) are sequestering in the spleen. Taking out up to 70% of the spleen through embolization will often kick out those hiding in the spleen. It is the established protocol and treatment for acquired thrombocytopenia (low platelets) for someone who needs to get back on the chemo wagon (yes, I am going back to cis/gem). Platelet transfusions only last a few hours - they use them for surgeries sometimes, but not to up your counts for chemo or a trial. the shot neupogen or whatever it is called (sorry) only brings up your white cell count, not platelets.
My platelets had been between 30 and 60 for months and clearly were not coming back on their own. I am pretty desperate to get back on chemo,hence the surgeries. Often they are done in two parts but you can also go all the way to 70% in one, which is what i wanted. I even yelled at the surgeon on the table when i heard him say they were stopping at 40% the first time! I knew it was not enough. So that's why I had two surgeries back to back.I guess they can be dangerous, in addition to painful.
I will know more soon. Love to all, Holly
Re: Body's natural defence carries early warning system for recurring canc (8 replies, posted in New Developments)
this is great! hurry it up! <wish>
Had a delightful dinner with Regina in Dc yesterday with our guys, too. A four-and-a-half-hour- dinner. Lots to talk about, share, laugh about! I need that dose of tough optimism from her. Turns out her guy went to the same school I did and we had friends in common. The wonderful people we meet along the way! It's such a gift!
So anyway my news goes from bad to worse but hopefully will turn soon. My ca19-9 is over 20,000 (yes you read that right) and I have three tumors over 1 cm and many others. I had a back-to-back second partial splenic embolization (extremely painful arrgghh), lost another month while my cancer races to the endzone .... and am now poised to see if I can try some more good ole gem/cis which worked so well for me a year ago. I shall have news by the week's end.
Meanwhile, my youngest daughter did go off to boarding school and has finally settled in and all five children will be home for both Thanksgiving and Christmas. My joy!!!!! I think of all of you here all the time and pray for us all to have release from this disease.