Gosh, well you sure have had your fair share of crap haven't ya! Oye. Well I am so glad recovery is going well and that you have plans in place. And your thoughts are exactly like mine for my situation. I would like to be done too! This is the third year in a row, even the same time of year I am going in for major surgery. As happy as I am to be able to have surgery, I would like a break! We have shown who's boss and will continue to do so! Many hugs and prayers and keep us updated! <3
Oh Lainy, you too. Prayers always. My 2 cents, if they can and want to cut it out, GET IT OUT! Are you having to go through radiation after these surgeries as well? Hugs and love to you.
Hi all. Here is the newest update on me. I had my cardiothoracic appt on Monday with what I thought I was going into a biopsy consult. It wasn't. It was a surgery consult. They do believe some of these are mets and most lkely spread of my cc.. We don't hear of docs going in and cherry picking them out, but in my case this is what they want to do and are confident they can get them out. I do realize that that the recurrence is high and the chance of them coming back and more of them, is highly likely. But for now, I want to go for it and if they want to get those suckers out, let's do it. I didn't opt for a biopsy given, what would they point of that be if they are confident they can go in and get them out. I didn't want to wait and see if these grew on my next scan, and I didn't want to biopsy, have the path report come back as malignant and then who knows, maybe a surgical option would have been too late at that point. We do know that time is not necessarily on our side. They are feeling pretty confident that these are malignant and want to proceed with surgery. This will start out as a VAT procedure and if they can't get what they want, they will make the incision bigger and go for a full on thoracotomy. So, this is the 3rd year, and same time--I am going in for major surgery and as blessed as I feel to be given these options, I am scared out of my mind! Surgery is scheduled for Feb 23rd. I will keep you posted as well as my FB will updated as we go. Thanks foundation for being here for all of us. Much love and many prayers to all.
hi Julie, I know you saw and we briefly mentioned this on FB, but yes. I too was just told I have a small incisional hernia right at the top of my abdomen right before my scar starts to curve to the right. Mine is small doesn't present symptoms. We were going to address after my cardiothoracic appt on Monday but like I said I have not yet given everything else going on. They are common and from what I have heard, fairly easy to repair.
Hi Donna and welcome. As much as we all hate as to why we are here, it's a wonderful group of people. Do you know or have you had genetic testing? Your trial number sounds similar to mine hence why I asked about the mutations. The one we might look at down the road is BGJ398. I am curious the difference. Or maybe I am reading it as a 6 instead of a G.
Hugs and continued prayers to you and your journey.
Thanks Darla. How is everything with you?
Sherry, I too was mis diagnosed with a liver hemangioma in 2009! Didn't get a confirm diagnosis of ICC until 2013. I went to the ER for pain thinking mine had burst as they told me this could be a possibility because it was quite large. The ED doc looked at me and said I don't think this is what you have, and things moved pretty fast from there. It sounds like they caught it fairly early being diagnosed with Stage 1, i feel like we don't hear of that very often as many of us are diagnosed at later stages. I am glad he was able to have the resection and surgery and hope things continue to head in the right direction! Prayers and good luck to you all!
WE have a member who is on Keytruda and he might be able to chime in at some point. I don't think it is an "approved" treatment for cc as this time but here is a little info on it...
https://clinicaltrials.gov/show/NCT0205 … ecifically about the Keytruda
I had a little trouble with my biopsies and have intrahepatic cholangio. I had 2 done...The first one came back negative. My surgeon felt uneasy with those results and therefore had a second one and that is when I got my confirmed diagnosis.
Hope you find some answers very soon. Prayers to you guys.
Hi. My situation was similar. Started off with a 18cm tumor in liver and had the same surgery in 2014 and the tumor was about 13cm upon removal. Path report was great and had clean margins. i was a little bit younger at the time, about 35 so I had age on my side, but man, recovery was tough. I felt sick, I hurt, I wanted to eat but felt like I couldn't and had to really just graze minimally throughout the day. It takes time and it's a major major surgery. I would imagine he would be on a pain medication regimen and I am curious if that could also be playing a role with some of the GI discomfort as they themselves can be harsh on the body. I hope and pray he starts to get to feeling better soon. Hugs and prayers.
Ashley, I too have the fgfr2 mutation. Currently I am NED but we are looking at a few suspicious lung nodules right now that they hope to biopsy in a couple weeks. We won't know our plan of action until we get those results but..we have talked about if it is cc, I would start chemo again before trying to get into a trial at MD Anderson. I believe mine is a phase II-BGJ398 (it sounds like the one Tom will be on is different) and I am wondering if I should also look more into this for when my time comes and want to look into as many options as possible.
I am glad to hear he got accepted into the trial and too look forward to hearing good results. Hugs and prayers to you.
My dear friend Matt. I've already told you but I am so happy to hear about your latest news and that you got relief to find that all of your labs are trending down and back to normal.
Julie, I had tried messaging you on FB the other day. Been thinking about you a lot. Hope all is well and would love to go more in depth when you are up to it! Hugs and prayers.
Lainy, my dear friend. I need to catch up on all that you have been through. Sounds like you have been kept busy. I am glad to hear that this latest surgery went well and I hope you have a swift recovery. Prayers and hugs to you my friend. xoxo
Awe. Thanks everyone. Well as you know this monster continues to be a roller coaster of a ride. DX in 2013 first resection in Jan of 14...Had my first recurrence within 6 months and had a second resection in Feb of 14. So here we are, had a scan a couple of weeks ago. I have a few lung nodules pop up (in fact none of them are new and there hasn't been concern until now) a couple of them have had some growth over the last 2 scans. Good news, like I said there aren't any new spots and these have been showing since diagnosis. All labs and tumor marker look beautiful and so does the liver! Obviously the bad news is it looks like they are starting to grow and that being said they are still small and slightly under 1cm. They are bi lateral so they are not wanting to remove them. I see a cardiothoracic surgeon on Feb 8th for a consult with the ideal situation to get a biopsy for a firm diagnosis. From there we will discuss our plan of action with the idea of a clinical trial at MD in Texas if they are malignant. Trying to keep my hopes and attitude lifted up and I know I have no control over the situation and live life to the fullest while I can, enjoy each moment and my children, and overall..I mean i feel good. So that's where I am at. ---I also just found out my surgeon is supposed to be at the conference next week, so for those of you that are going---Keep an eye out for my Dr.O---Her name is Susan Orloff. I hope to stay connected more often and always thinking about you guys. Again, thanks for being here and such a huge support group in my life and education me on this disease over the last couple of years. I feel like I have become somewhat of an expert. Long way to come from not even knowing how to pronounce this disease or have any idea of what it meant or entailed. Prayers, hugs, and love to all!
(Also, I have struggled with pain since surgery pretty consistent off and on. I am now being managed through a pain clinic in town and we are going to start doing nerve block injections for the nerves in my abdomen. Has anyone tried this over their course with this disease and pain management?)
Hi cholangio family. It's been a long time. I just wanted to say hello and check in. I am mostly on Facebook these days, but just wanted to remind everyone I am always thinking about this organization and how grateful I am for it. You guys were my first stop when I was DX in 2013 and I will be forever grateful for this foundation for all the support, awareness, and education. I don't know what I have done with this foundation. Like i said I'm not on here much and hope to check in more often, but I'm always thinking about this site and the people on this site. Hugs and prayers to all.
Yipee, I mean we all knew you were in the clear. I did want to point out that I got a chest ct, demanded it this time after surgery. They pointed out nodules in my lungs as well. They called them pulmonary nodules. Same ones that apparently have been there for years like 4mm, never have changet size, and said most likely from residuals from infection. So at first the worried me of course and it clearly states these are not metastatic disease and sounds like thesecond little nodules are common eh?
Well hope u have or go celebrate soon Julie. Move on, go enjoy. Take a break from this crazy roller coaster ride. Keep on keeping on. So happy you got clear results! Just as I expected.
Hey Matt my port was definitly still tender after about a week. I also decided to take a wave runner for a spin a few days after my port was installed and as I was on the water making a turn the end of the handle bar kinda hit my port which also probably caused some of the tenderness but I recall it being fairly tender a lot longer than I thought or had expected. Ice packs were my friend.
Hiya. I had a resection in January of 14 then did adjuvant chemo for 6 months aFter with scans every 3 months. Over the past year they had noticed small spots on my liver and told me it was nothing to worry about and they would keep an eye on it. During this time all my blood work was normal. In December my ca 19 9 had jumped to 60, but did drop back to 10 in the beginning of Feb. I was told these numbers can fluctuate often especially after surgery and chemo/treatment. Well eventhough my numbers were wnl the little spots back in my livr was a recurrence and I had a second resection just last week. I too was told if mine came back it would most likely be in my liver as well. So I guess my biggest advice to you is be your best advocate, advocate for yourself and what your needs are, get answers. I hope you feel better soon and that you have some more info about what is going on, if anything at all. Hugs and blessings to you.
What wonderful news and congrats on the successful resection. Hugs and blessings to you.
Oh duke, if u only knew. I am ways being told what an awful patient I am but I went out of my way to be a better one this time. I must say I am putting my energy elsewhere right now and could use all your love and support and gooD energy as well. My aunt came to be with me but suddenly had to leave bc my uncle apparently collapsed on the beach by their house and had a massive heart attack. They put him in a medical induced coma, and he is on a ventilator. These 2 are like a second set of parents to me. I love then with all I got. please keep them in your thoughts and send them whatever you feel is appropriate for you. I'd much appreciate it. Thank you!!!!!
all is great with me, everything is good and I will be discharging tomorrow. Blessings and hugs.
Hi guys I'm kinda of in nodding off land. In hospital. Second day post op. I'm good. Recovering well. Two lesions were removed and were indeed cancer , but there happened to be be nothing wrong with my intestines so all they did was clean up in there and worked on those adhesions. So I'm falling asleep while I'm writing this but will check in again tom. Overall wonderful news, cancer was removed and we got clear margins. thanks for all the love and support. Hugs and blessings to all.
Lain I recall u mentioning that before. Thank u. I will keep that in mind and bring it up with the anesthesiologist tom.
Hi guys. Thanks so much. I met with surgeon today. Feeling a bit, well let's be frank, etremely anxious. Surgeon informed me there is 2 little lesions and now been informed that with the intestines the likely cause is scar tissue but could be a possibility that it's cancer knudged in there that could be causing the friction. If that is the case during surgery they will find out and resect that part of the bowel. They seem optimistic that is not the case. They are guessing about 6 hours for surgery which sounds more appealing to me than the last 15 hour one I am so grateful for all of you and thank you for the support. Porter
Can they remove an entire pancreas? Can one live without one? Sorry, I feel like these are dumb questions but these questions came to my mind say if one had pancreatic cancer or mets in their pancreas, can the whole thing come out? I was under the impression all of a pancreas could not be removed.