willow
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No blood thinners. No talk of blood clots (though I can see why thinning the blood may help if the vessel is narrowed, just to improve flow).
She is only on the standard Gem/Cis and the meds they give concurrent with that:
IV Zofran day of chemo, a neulasta shot day after chemo, ativan.She’s had chemo every other week. Chemo has definitely caused low blood counts from the very first tx (wbc’s early on and platelets last week) which have deferred chemo a couple times.
She hasn’t had problems with severe nausea or vomiting, so hasn’t had to take the meds given for home use for that.
Sounded to me like They do chemo, but in smaller, more frequent doses and after testing the tumor for susceptibility to chemo agents.
Also sounded like a for-profit business. who has that kind of money… even those with insurance face catastrophic out of pocket expenses. I’m with you in sticking to tried and true, but thought I had heard somewhere on this blog of other patients getting their tumors tested at a special lab to see what chemo works on the cells in the lab setting.
Do you know if this is becoming more common and if it’s covered by insurance? (targeted chemo choice rather than “stab in the dark” approach?
Percy,
Thanks for sharing your experience. We really wish they gave her a choice of chemoembo rather than radioembo. My sister just turned 50 and has a young child and so much to live for. I do hope she will come through and be able to maintain much like Maria in Sweden has!from that article:
“Tumor in the portal vein may have an appearance identical to that of thrombosis, but this appearance is far less common than others. Tumor in the portal vein is most frequently related to hepatocellular carcinoma. The thrombus may be partial or complete. It may be mixed with bland thrombus as well.”
Article on medscape about Portal Vein Tumor thrombosis
http://emedicine.medscape.com/article/373009-overview
Percy,
Sorry, I don’t have the report, but I did ask my sister for it. She said she would mail (snail mail) me a copy. I will send it to you via private email (rather than the blog), with her blessing. Percy, thank you so much just for caring enough to think about this one! Bless you, Willowit’s in the portal vein. Started in the right branch, very near the junction to the main portal vein. Grew into that junction and up into the left branch, all right at the Y (where the main portal vein splits into the left and right portal veins).
Kris, Maria put into words such profound insight. Sure, the goal has changed and you have every reason and right to feel scared and disappointed. Maria’s comments are SO right on the money as to how we can cope by thinking a different way about definitions of disease and health. Hope it does bring peace you.
WillowReally Thinking you and especially of Jeff during this time. I expect the Dr will quickly change gears with chemo. Please keep us posted, Willow
Thanks, Eli for your time, effort and well thought out responses (to all questions on this board). Helped me to really understand why there are so few standard protocols with CC treatments, and specifically with adjuvant tx after RO resections. Curious, Are you in the science field?
Sounds to me (im not a dr either) that moderation is the key. If your wife were to drink iced tea in the quantities required (large) that sounds like a lot of diuretic which could lead to dehydration. Ive read that Preventing dehydration during chemo is the bigger emphasis (not “getting rid of the chemo” as you mentioned). Many on chemo end up needing to go back for hydration IV INtavenous treatment on a regular basis. I’ve read too that generally “feeling lousy” after chemo can be lessened considerably by staying hydrated. There’s something called water intoxication (too much drinking in too short a period) also… That can throw off electrolytes . Doesn’t sound like that will be a problem. Anyway, I’d think they would give the OK for one or two glasses of caffeinated beverages; ask the Dr again. Best to you and your wife!
Just read your post and really, truly feel for you. I can relate too, having so many questions and not knowing what to expect. My sister was just diag in early Aug, just before she turned 50, is married and has a young son. Like you, I’m really having a Hard time wrapping my head around this being REAL and almost dsily read discussions on this blog to help get a sense of control where there really is none. It does help though, tons of knowledgable people with compassion and patience. im almost as new to this as you are but the one thing I’ve gathered is that no two people follow the same path with CC though many share similar problems along the road. Frustrating since we want answers! Anyhow, so glad you could be with your Dad for a few days. His symptoms may be something tvat csn be alleviated by a procedure (like if there is a blockage of colon or bile duct. maybe he should get to a dr sooner since this pain is sudden and severe.
Thank goodness he has you, his girlfriend there and his Mom coming soon. Willow
