willow
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JZ,
You’ve been through a lot but are a source of hope, strength and inspiration to more than you know. Thanks for sharing the unique clinical trial you’re on and a little about yourself. My sister has ICC as does my good friends’ sister in LA (who is now also someone dear to me). I’ve been reaching out to both as they navigate this lonely road. Neither uses this board out of fear of coming across too much scary info or heartbreak but I really wish they would as its a wonderful source of info and support and hope. Thanks again for posting
Thanks Gavin… A friend with CC who doesn’t use this site just shared that sleep is an issue. Ill share it..
Thank you, Percy! That is the most comprehensive article for non medical people and has great illustrations.
I agreed, GREAT conversation to begin with and thanks too fir such informative and concise explanation in LAYMANS terms from Marion. It reiterates Percy’s point that we can’t all just talk about the problem but action is necessary to help those with cancers and specifically this rare cancer. Problem is we’re not all so savvy and educated in the workings of this complex world where business and medicine combine. I want yo add my two cents that just as there’s big bucks to be made from traditional meds, many are making big bucks selling the natural or non western remedies. Marion’s put it so well in that many alternative treatments might help but they need expensive proper studies to prove it.
Love and peace,
WillowJules,
Your mum may do better than she thinks on gem/cis and if not, there are other types and combos of chemo that have had success in shrinking tumors. I’m not aware of any immunotherapy for CC either, though I am very intrigued by it in general.Yes, Kris, stable is a wonderful thing!
Love to you all too! I’ve believed the same all along about PET scans and wondered why they’re not used regularly to monitor cancer activity (rapid uptake of glucose), not just measuring the tumor size as CT and MRI’s do… especially when we’ve heard cases where there the tumor bulk is remaining but upon surgical inspection its found to be dead as a door-nail!
Insurance dictates the treatment/diagnostics rather than “standard of care”. Obviously, Most people don’t have the resources to pay for regular scans out of pocket.
XO
WillowI’m wondering the same thing. My Moms bladder cancer was treated by immunotherapy alone (no chemo or surgery) but it wasn’t at an advanced stage. They used a modified tuberculosis bacterium in solution, flooded her bladder for a couple hours at a time and this stimulated an immune response against the “invading pathogens”. She’s been in remission going on 2 years so were thrilled and intrigued with this line of medicine.
WillowNot sure if the Y90 microspheres are same as SiR spheres but thise both fall into the radioembolization category. My sister had radioembo at Stanford in Jan without any complications. She had some pain a few weeks or so afterward as the tumors get very inflamed in reaction to the radiation (this is expected). In April, scans showed that she didn’t have significant shrinkage of targeted tumors but did have a little. The CT doesn’t show how active these liver tumors are (as a PET would) so its possible that the tumors were rendered dead without a huge amount of shrinkage. Those tumors haven’t progressed either, which I consider a measure of success (though some mets appeared in areas not targeted by the radioembo.
Hope this helps,
Willow
