holly22a
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That is one heck of a drop in tumor marker! Means chemo really works for you. When one “cocktail” either stops working or causes too many side effects, you just switch to another. Good luck with finding some other therapies, too, and keep us all posted. Welcome to the family.
Oh, and no worries until the temp gets to be 101, or so I was told. I ran fevers up and down from 97 to 100.8 and back for weeks. The liver is apparently the site of chemical syntheses that help regulate body temperature and so that can just get a little out of whack. Plus your body has just been through so much, it is allowed to complain. Anyway that’s what my docs told me.
Oh, a joy to be home, for sure — but I know from all my rides back and forth from DC to NYC that traveling after surgery is no piece of cake – – every pothole is agony! So rest up, sweet Lauren, rest all you can. Don’t let the puppies jump on your middle, wish I knew something about fluids but I don’t. Glad to hear all your news! Hugs!
HollyHi Cathy!
I was diagnosed ICC (no nodes, no distant mets, but mets to the liver itself) in October 2012. Did three rounds of Gem/Cis and got great shrinkage on a large tumor (6 cm), two smaller ones (2 cm) and little ones throughout the liver (< 1 cm). I had certainly NOT been a candidate for any type of surgery. But the shrinkage was so impressive and my overall health so hardy, the surgeon decided to "throw in" surgery. Mind you not a curative surgery in anyone's book but a surgery designed to take out at least 80% of the tumor burden and leave only all those little ones (left lobe gone, taken out). Hopefully buying a lot of time. Next, only a few days out of icu for the surgery, they started the process for the therasperes of yttrium-90. The plan was to go back to chemo right away but I have had trouble with counts. I went back to chemo today, about 6 weeks after the y-90 infusion. So you can see that if you get good shrinkage and really respond to chemo, you have more options. If not, you always have radiation and some members fight this thing with surgery and radiation only, both y-90 and also stereotactic radiation. I don't hear as much about radio-frequency ablation on this list. I am wondering if anyone has had it?? Also get in touch with NIH as there are at least two immunotherapy trials for our cancer that look most interesting. You have to have actual tumors of at least a cm so I cannot qualify at the moment but would like to when they come back. Good luck to you! Keep fighting! Tell us all about it, we want news! Much love to you. HollyOh, thank you so much for the quotation! I am saving this for my little scrapbook (which also has lots of Lainy poems in it) for my beloved, my soulmate, my husband, … and for my three children (14 to 23) when I go. I wish sometimes that my husband would get on this site because ultimately maybe he could find solace here, but he won’t. Dear Clare, I hope you will keep coming back as often as you can to find love and support. I am so sorry about your young and brave sister, and also about how fast she declined. I have been thinking of you and your family all day. May each day bring you a little more comfort and a little less grief.
Such a lovely, poetic passage. We are all made of elements forged in the stars – – my father the physicist always reminded us as children that were are literally the stuff of stardust. Thank you for sharing this. I am sorry to hear of your sister and sorry for her suffering. Many condolences to you and your family and special hugs to you from your friends here.
HollyThank you for your uplifting and kind words, Percy! I am a violinist, a teacher and lover of chamber music, and I also play a little piano for myself. Music has always been my life, and my students my joy. I take them from 3 or 4 years old through high school. I am passionate about them and about bringing along the next generation of chamber music players! Sadly, since I have CC I find my energy so drained that I have had to reduce the size of my studio and kept only the most advanced students. I just feel my life force goes to them and I need to be selfish and keep more for myself these days. You know it is so hard to fight this cancer.
I would very much love to meet you and yes I will be here on friday during the day this coming week April 5th. I have tentative plans to be away on saturday so friday would be best, but I might be here saturday if I am too sick from chemo to go away. (you know how you never know with this business!) Please call me at home 202-333-0401 or on my cell 202-907-3568. I live right in the city near American University (northwest DC).
I will go post right now about my experiences in February. I have been too tired until now but I do think my experiences might be useful to someone else.
HollyThank you Percy. Fascinating. I have a degree in molecular biophysics and when I got cholangio and started researching treatments I could not imagine we were not further along. (I went on in economics and then ended up working professionally as a musician so I was out of the field for many years). Thank you so much for all your posts.
I have been thinking of you and praying for you this whole week. So glad to hear Tuesday went well and can’t wait for details! Xox to you and Lauren!
Hi Pam, I will be thinking of you and praying for you all on tuesday. Waiting is so hard, but you are not alone, all of us will be gathered around in spirit that day. Lauren will do great, she is young and strong and in good hands. xox Holly
Oh, Kris. can I vent too?? Thank you for giving all of us permission to vent, to rage, to cry out that it isn’t fair. It is NOT FAIR!!!! I just married the love of my life and I have to leave now? My daughter is 14 and I have to leave her? Is is NOT FAIR! Bundle yourself up and scream out and cry – – we all do it but you are just braver, you are giving voice to the anger and sadness and “I have had enough” that we all feel. I thank you for your gift, and I HUG you with all my might. Please know you are loved. Just hold that close. From all of us. xoxox Holly
