Lainey to the rescue! Merci beaucoup!

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.

Hello friends. I wanted to send an update on my daughter, Alison (age 42) who was diagnosed with inoperable ICC in early Oct 2012 in Baton Rouge, LA (BR).  It’s been awhile since either of us posted. In review, she had a pain in upper abdomen (like a runner’s stitch) and thought it was from a gallstone. An ultrasound showed spots on the liver; other tests (xray, endoscopy, colonoscopy, cat scan, blood work) and final biopsy confirmed ICC with several lesions in the liver and other possibilities, but nothing else definitively confirmed. MDAnderson (MDA) concurred on the diagnosis and started her on 4-5 rounds of gem/cis, to be administered in BR. She had a port put in to make the infusions easier. The BR facility sent her tissue to Biothernastics for dna evaluation of the origin site; Dr. Shroff at MDA sent her biopsy to Foundation Medicine  (FM) for genomic sequencing.

Alison handled the gem/cis quite well, except for mild nausea and fatigue. After the 2nd treatment, she developed a blood clot in her calf and was prescribed xarelto in BR. Dr. Shroff later changed this to daily lovinox injections.
During this time, we received a 3rd opinion from Dr. Fong at Memorial Sloan Kettering (MSK). He indicated that if the tumors hadn’t grown after 4 treatments, he would consider doing a portal vein embolization and then surgery.  It appeared to him that all of the tumors were located only on the right lobe of the liver.
When we learned her CA 19 readings had doubled after the 4th treatment, we headed to MDA CMas week for rescan, which revealed the tumors had grown, although there were no new tumors. (We also had a 2nd biopsy done for FM; the first one wasn’t able to be tested bcuz it didn’t contain enough tumor tissue. ) MDA switched her chemo to Folfiri and Avastin. (Ins. delayed Avastin due to a 28 day surgery exclusion from the biopsy.)

We sent the new scans to Dr. Fong; he called to say we should come then, rather than later. This time he hoped for surgery and the pump (which would deliver chemo straight into the liver).  So after one treatment of Folfiri we headed to MSK on Jan. 13th to see Drs. Fong and Kemeny, the onc.  Fong ordered an angioMRI, which indicated a suspicious area at the pancreas.  He then ordered an endoscopic ultrasound biopsy which proved positive for a pancreatic lesion and a couple lymph nodes. In discussion with Kemeny, they recommended she try 4 rounds of Folirinox and return for rescans in March. The pancreatic involvement at this point appears to be in a self-contained “sack” which is attached to the pancreas. The liver lesions still appear to be only on the right lobe, which according to Fong is quite unusual. At any rate, if we can arrest tumor growth, he still says he may be able to do surgery. Whether it’s cholangio or pancreatic, they say that treatment would essentially be the same.

Alison has her 2nd Folfirinox infusion this week in BR. Other than slightly more fatigue, nausea, and a little pain, she has tolerated it well, except that during the infusion and for about 3 hours after, she has some strange, scary symptoms: tongue-tied thickening feeling in the mouth – hard time talking; eye twitching; a very very heavy feeling in upper chest & swallowing area.

The FM report identified a number of alterations and suggested a potential therapy and several specific trials: 
KRAS amplification (G12D)  [Foundation Med mentioned these trials:  NCT 01562275, a Phase 1b study of GDC-0973 & GDC-0068; NCT 01363232, a Phase 1b study of BKM120 & MEK 162: and potential treatment with Trametinib, a MEK inhibitor approved by FDA for melanoma]
TP53 R175H  [Fdn Med identified NCT 01664000, a Phase 1 study of kevetrin]
CDKN2A and B (loss of each) [In connection with the CDKN2A loss, Fdn Med identified NCT 01237236, a Phase 1 study of LEE011; NCT 01394016, a Phase 1 trial of a CDK4/6 inhibitor]
CCND3 amplification [Fdn Med again mentioned NCT 01394016 as potentially relevant for this amplification.]
ZNF217 amplification [no treatment or trial suggested]
two ‘Variants of Unknown Significance’ were also noted: BLM H247 &  PAX5 V164L  ‘in case they become clinically relevant in the future’.

After reviewing these results, Kemeny said to stay the course on Folfirinox for now. If surgery isn’t an option after this next MSK visit, we are interested in Interventional Radiologist options as well as trials. If anyone has suggestions - or experience with any of the above trials or drugs, we appreciate the input.

Sorry this is so long, but there is nothing short or sweet about CC. There is obviously much more I could’ve said, but tried to keep it to the nuts&bolts. Thank you for being there and sharing your stories, input, pointers, etc. and most importantly, you strength and courage.  Hugs, Ceci

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

Thank you Lorena. How is your son doing? Also, just browse around looking for Melinda? Will do.

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 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!)