Forum Replies Created
April 10, 2014 at 12:20 am in reply to: Alberta (& Saskatchewan) Tar Sands – cluster of CCA occurrence #81473
I grew up in Oak Ridge TN (Where one of the National labs is)
my generation is full of cancer…
all good thoughts and love go out to you tonight. You have been a blessing in my journey and so many others’. I always learn from your posts and take heart from them. God Bless You. Love, Holly
Thank you all for the advice and greetings. Going to do another y-90 since chemos don’t work so well on my cancer at this point. I’ll keep you all posted. xoxoxo
love, love, love, love in abundance. You are so loved by so many, including me! Always in my prayers. xox Holly
woo-hoo! Merry Christmas! xoxoxDecember 16, 2013 at 3:52 am in reply to: Multidisciplinary Treatment of Bile Duct Cancer (BDC) #77917
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!!!December 12, 2013 at 9:48 am in reply to: Received bad news yesterday and looking for advice #77747
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
i love this.
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?