ceciliarose
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Thank you so much for your insight Percy. The super long post is probably discouraging anyone from even trying to read it! (I wish I knew how to delete the duplicates!). As per Dr Fong, Alison has eleven tumors on the right lobe. The largest was initially 1.9cm but grew to 3.4 by the second scan. The smaller ones grew also, but they were not measured.
I appreciate your information on the targeted therapies… We haven’t yet had a good conversation with a doctor about those opportunities. Thank you.
Thanks y’all. To Ladylinden, Alison had minimal swelling. I don’t remember anyone cautioning about swelling… But now that u mention it, the first day after chemo, she commented that her fingers were so swollen that she couldn’t remove her rings. So now I’m understanding from you that this was probably from the steroids. She didn’t mention it again, and unfortunately I didn’t think to ask. Now re the power port…. The dr said the power port is slightly smaller than a regular port. I was surprised last week when they scheduled her for the implant to happen just before her scheduled chemo ( that’s when we opted for the IV). So now this week, they again scheduled her for the implant to happen the day before the scheduled chemo….then the dr explained they leave the needle on the outside (taped down & protected) so that the chemo can be administered from outside the site this first go round. After the chemo is administered, they then remove the exposed needle… The port continues healing and the next time chemo is administered, they use the port in the normal fashion. I’m sorry to hear about the discomfort that’s been described. But I guess it’s better to be prepared. Thank you all for sharing.
Oh yes, one other question for those of you that took the gin/cis combination. What was your experience with hair loss? The dr at MDAnderson said she may have thinning, but didn’t they expect full loss. But the chemo nurse in Baton Rouge said to expect full loss. Just curious about when and what to expect.
Merci beaucoup to all. We had the pre-op today for the port which will be installed a week from Monday( the day before Alison’s 2nd chemo). So, we have the next week to make the decision between a “regular” port and the power port. The power port sounds really interesting considering the fact that I’m certain more CT’s etc will be done down the road. If anyone has an adverse opinion about the power port, or a strong opinion why to stick with the regular one, I certainly appreciate the feedback. Today was day 4 of her first gem/cis chemo. She has done remarkably well, but today she felt poorly… I understand this could be due to the steroids wearing off? Nevertheless, still no nausea, only mild fatigue, but today more so . Thanks to all for the insights and encouragement. Ceci
Thanks for those tips. We were fortunate to have gotten the emend on our first round of chemo. It has gone amazingly well( finishing Day 3) so far. I will definitely ask about Neulasta. Not sure what you mean, Shreitumic, about “second chemo infusion of each cycle”. Alison is getting the gem/cis every 14th day. We have had one treatment. She will get her port next week; haven’t heard about a power port.
Hey everybody. Thanks for all your input with re to my daughter Alison beginning gem/cis chemo yesterday. It has gone amazingly well so far; have been back home 24 hrs now. Maybe a little fatigue, very slight flu- like symptoms earlier today, but virtually no nausea, just an occasional “tight” feeling in her stomach now/then. Also, I saw where a couple members touted such raves about “emend”… So I was thrilled when the nurse said she’d be getting that; I didn’t have to ask for it! So…. Is this pretty much indicative of what her response will be like?Or could it still go south over the next 48 hrs? Also, do these side-effect have any relation to the white blood count, which may drop 7-10 days from now? Is there any correlation? I would assume if your nausea is minimal and you can keep up your food intake, that’s what affects thE blood count? Or is it totally unrelated? Thanks, Ceci
Hi Tiffany, my 42yr old daughter, Alison, is under Dr Shroff’s care. She is starting her chemo Tues in Baton Rouge, as per Dr Shroff’s prescription. You are our role model! We hope to follow in your footsteps. Shroff said to focus on our chemo and look for 6-10 months stabilization with no new growth. My understanding is that Alison’s cholangio has mets. in the liver, with several tumors on both sides, but that it had not spread outside the liver. You are in our prayers for continued success. God bless, Ceci
Gotcha; thanks to all. Got my note tablet today and a new warm,soft cuddly blanket and am making my list for the other chemo items. Wonderful ideas. Am really optimistic about minimum side effects after reading that this is possible. Yes, I read Tiff’s story and figure she’s the one Dr Shroff referenced. But I had misunderstood and thought she was still awaiting the transplant. It’s so incredibly awesome to hear that it’s successful at this time. Thank you all for your support. Ceci
Ohhh… Y’all are something else! Thank you Marion, jScott, Lainy, kvolland, pfox, and thebompie4…. I am taking notes on all the advice and hope we get the chance to utilize these ideas as Alison begins her chemo. I am also taking notes on your stories so I can try to envision you as individuals and not just a big clump of advocates! I figure I can handle a small group of new friends, but, gulp!, there are tons others on the site too! But each of you has already offered precious nuggets of info… I am so appreciative. Forgot to mention that Alison set up a Caringbridge page, if you are familiar with that. She is listed as Alison Neustrom. Y’all have a great day. We’ll be doing the Saints! Who-dat! So…. Lainy, you think I need to try and go on the Introduction page? I’m not sure if I know how to “copy”. I’m on an iPad; maybe I need to get on the computer for that.
Lainey, huge thanks for your support. Tell me about this moderator status? Is it because of your length of time, or the quality of your encouragement??? Either way, you are a comfort. Thanks. It is scarey; does not seem real; so much to learn. So many things you forget to ask the doctor. I appreciate that this is a place to obtain some answers, albeit layman, but obviously trustworthy.
Oh, I forgot to mention. Alison will use Dr Shroff’s gem/cis prescription for the chemo, but the dr in Baton a rouge will administer it. When and if her symptoms become unmanageable, she can transfer to an oncologist here is Lafayette where we can be of more help, still using the MDAnderson prescription.
Oh gosh, you all are wonderful to all share so much! Alison will be using an IV for her first few chemo treatments, and maybe moving to the port later. Is the port all the way inside, with skin covering it, or is it the dangling type? Which do you recommend when the time comes? Alison was first diagnosed in Baton Rouge under the care of oncology Dr Castine. We then got over to MDAnderson with Dr Rachna Shroff. They both indicated pretty much the same. (Shroff did give us a sheet with nausea meds to get ordered, but I was looking for confirmation from the warriors themselves! Now have it!) all the tests (CT, bone scan, colonoscopy and endoscopy indicated no spreading. Metastasis appears only in the liver, but apparently in several tumors, such that they both indicated surgery was not an option. Dr Shroff indicated that Alison would not be able to get off chemo…. She left the door slightly ajar that if Alison’s chemo went well with no new growth.. And maintained stabilization for 6-10 months, then “possibly” she may be able to get her name on a transplant list. Shroff referenced another young woman over there (younger than Alison’s 42) who has been doing well, as described, and has gotten her name on the transplant list, however, she was willing to accept a “tainted” liver – I assume to get her name higher on the list. Shroff told us not to be thinking transplant, but to focus on the chemo for now. We are going to explore on our own- and I’ve already learned so much from this sight. Alison indicated she didn’t think she was ready to start this kind of discussion; it may get her down. So for now, you guys get only me!! Merci beaucoup!’
Hi y’all, my 42 yr old daughter just got her 2nd opinion of CC from MDAnderson on Oct 30th; this is my first post and I imagine Alison will join us at some point. So I am very new, in fact so new I haven’t even figured out how to post an introduction on the board. She has an 18month old and elected for Gem/cis, which is scheduled for this Tuesday. My understanding is that the primary is the bile duct and that there are multiple lesions that have mets.in the liver, on both sides, and is inoperable. I’m not sure if the “both sides” equates to the term “multi focal” that appeared as a possibility on her liver biopsy report. We are investigating trials and also pursuing other opinions on surgery and/or possible transplant down the road. In the meantime, with chemo in 4 days, I was wondering if there is anything we should do to prep her ahead of time for nausea, etc. I hear hydration is very important. I hate that we’ve been assigned as members to this elect group, but having read several of your posts, I already “feel the love”. Thanks, Ceci, Lafayette LA ( I hope to figure out how this discussion board works!)
