holly22a
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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….
HollyHi Judy!
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
Dear,dear Mary,
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, HollyI 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!
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
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.
Love,
HollyOh, 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.
