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.
Oh, it is so nice to have such friends along the way! Well, I did end up with back-to-back splenic embolizations --- one in sept. and one in oct. Pain upon pain, it is an awful surgery. They took just 30 %the first time, up to 65% the second, platelets look good so far -- hope to start a round of chemo this week. we will see. Meanwhile the tumors have followed the markers and now I have three over one cm.
Happy travels, Lainy, and may better health follow you to your family reunion. We all love you and await your return with more funny stories to keep smiles on our faces. xox Holly
You crack me up and you inspire me, Serena Regina! I would love to go on the MEK trial but I need a tumor and I need platelets. Oh well. For now my news is all of a sudden all bad - - tumor markers all up a little between July and August and then up 6-fold August to September and 4-fold more to October. Had a partial splenectomy which did not apparently work well, platelets still too low for chemo. (You can do a repeat but my goodness not back to back - - horribly painful surgery) So I'm a sitting duck now with ca-19 of almost 8000 and AFP of 3000. Things can turn bad so quickly. My oncologist is ever optimistic, but we are running out of choices even though the scans show no visible disease - - we know it's there and very busy. I always read that the mixed HC and CC tumors are aggressive! <sigh>
So sorry you are back among us in this way, Sandie. I had high doses of gem/cis. Tolerable with the anti-nausea meds. Third week, the one "off" was always nice. I got terrible neuropathy in my fingers but it went away when I went off the chemo. I am desperately tryng to get back on, but not enough platelets. Good luck. It's a strong a proven regime for cc. all fingers crossed! Your attitude is amazing. Thank you for sharing your vibes with us, you make me feel better to know you. ~Holly
Re: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb (11 replies, posted in Introductions!)
welcome to this site! First off I don't know anything about leg clots -- that's the way it is with this cancer: different for each person. Second, never listen when they say (guess) how long you have to live. Seems like they tell everybody 6 to 9 months, regardless. Many last an awful lot longer, years, even. Get lots of second opinions -- I got 4! But knowledge is your best friend with CC. Post your questions here, often. Somebody else might be wondering the same thing. We all learn together.
Good luck to all. Holly (1-year survivor with clean scans but elevated markers)
oh, the trials of markers!!! mine were the lowest they have ever been in june at 211. They doubled to 435 by august but went up six-fold from august to september to 2500. scans still show no disease visible. SO we are fighting numbers! It's all too little to see. I would be so happy to get anywhere so close to normal. There is just sometimes a little variation in the test, differences in your blood volume or pressure that day, lots of little things that can affect the markers, even inflammation. PLease don't worry till you have to! Enjoy the "no tumors" part of your checkup! Time to rejoice! Praying for you ...
I'm quite a bit further along but thought you might like to know .... after months of cis/gem then surgery and y-90, my platelets have been around 50 to 80 for six months now and are never coming back on their own. So I am having an embolization of the spleen so I can go back on chemo or get into a trial. Apparently that can kick out many platelets, if your spleen is enlarged, which it is in many liver disease patients.
You have already been so brave. It does seem so hard when a door closes and with this cancer we start with so many doors already closed to us. But we go on and do our research and try this and that - - I took my 15-year-old daughter to an appt with my oncologist with me and afterwards my daughter said, "Mom you talked so much and asked so many questions. I have never been to a doctor appt where the patient knows as much as the doctor, it seems" ! there are only one or two established protocols for this cancer and then everybody, every one of us, is outside the box, so to speak. We are all trying to figure out what next, what am I comfortable with? What is my intuition telling me? It can be so overwhelming. Some days I just want someone to take over and just tell me what to do! My right lobe had lots of tumors so y-90 was a good choice. And I think you can inject alcohol into lymph lodes (Percy knows all about this) But chemo is the only way to control those outside tumors unless they can be ablated, so maybe they can! Don't think you are running out of choices! And please keep writing. It's just as therapeutic for the rest of us who are suffering to lend an ear to a fellow traveler as it is to unload our own worries. Sending you many hugs.
Re: Scan scheduled for this Friday, September 20th (12 replies, posted in General Discussion)
hugs, prayers, healing thoughts on the way ---- and tomorrow is my birthday so I will think especially happy thoughts about you, dear Lisa!