IIIntrahepatic post surgery…My story and welcome to it
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Congratulations on the clean scan. No matter where you in this process knowing that they can’t see anything is wonderful. And having a cry when the anxiety is lifted is perfectly normal….I have more that once.
As for the chemo there are two camps with it….do and don’t. Part of the reason for that as our oncologist has explained is that there is not set in place treatment for cc yet. Unlike breast cancer that has a set recommendations for treatment, cc does not. Our ONC says there’s so many different paths docs take and he says that it is good since that way someone may hit on the magic bullet that will increase survival rates. My husband had clean margins on the second try, one positive node and no distant mets so we could have chosen either way. He wanted to do it all so that he can say he did everything he could.
As far as waiting until after Easter and other important stuff. They aren’t going to want to do anything until your wounds heal and they will need to get a port placed since it sounds like you are a hard IV start so I would bet you will get your wait.
Good luck,
KrisVI think your news is fabulous! And, I hope you will find the Gemara/cisplatin isnt so bad (I was fortunate to not have a lot of side effects on it). You have plenty of reasons to celebrate that birthday!
That weekend is also my anniversary, so I’ll join you in celebrating a milestone (mine is finishing chemo/radiation, hoping to have shrunk my tumor enough for surgery or killed it dead).
Cheers!
Lisa
Julie,
Such good news. I am so happy for you. No matter what you decide, enjoy your birthday and Easter celebrations. Take care.
Love & Hugs,
DarlaYEA! Julia, way to go! Your crying the other day could have been pent up emotion from the Scan report and well, heck you have been through a lot! A cry here and there is normal but if you find yourself crying daily tell your ONC as you might just need a little something to take the edge off for awhile. So, you are April 21st? I am April 20th!~
Well congrats on the scan and no new tumors. That is wonderful news. From my understanding you are correct that there is very little or no studies in regards to the effectiveness of adjuvant chemo when it comes to cc. I too had a large resection and my path report came back good and with clean margins. There is no visible evidence of disease and my personal choice and reason was my teams suggested it after consulting with multiple other teams and the Recommended it in case there are any microscopic cells we cant see.Blessings to you on your continued journey and healing process and happy to hear you have a wonderful supportive partner.
hugs.
PorterFollow up at Mayo is over. NO NEW TUMORS! I realize this is just 5 and a half weeks post surgery after removing the two tumors, so it isn’t much time for more to pop up yet, but it was still good to hear. I will be doing chemo of Gemzar and cisplatin after two incisions that popped stitches are healed. The incision issue isn’t as bad as my GP had thought, though I’m glad she did a culture…still waiting to hear about that, but am taking an antibiotic just in case. The surgeon says that the unhealed area is superficial and she expects it to heal in a week to week and a half. I don’t know if a little extra time would make a difference in effectiveness, but I’d love to be able to celebrate my birthday on April 21 and Easter without dealing with the effects of chemo. I will defer to my oncologist, but they said that they’d like me to start it soon. I really didn’t an answer about metronomic fractionated chemo…other than it isn’t tested on CC. My oncologist was concerned that one place in particular that uses it , is doing so without having good study data to prove that it works. However, he actually said the same for Gemzar and Cisplatin…that there are no studies showing that they work to keep tumors from forming again, so I”m still confused on that subject. The franctionated dosing chemo seems to make sense to me…and I’m not really sure that both methods aren’t a big gamble….with doing nothing also a gamble.
Had a couple real cries today…..one due to extreme anxiety in advance of an IV being placed for the CT Scan (I have awful times at home with upwards of 9 attempts before they gain access, yet each time I have one inserted at Mayo, they do it the first try….and today was no exception). But, other cries were during the oncology consult and later, during supper with my husband. He is my rock,love of my life and husband of almost 39 years. He comforts me and gives me hope, reminding me that I could just as well be in the good percentages of the survival from this crappy disease. We’ve been through a lot over our 39 years together, and this surely could do in the strongest message, but he is by my side through every step of this. They don’t make husbands much better than he is….and I consider myself fortunate that he loves me.Dear Julie, WELCOME TO OUR ‘SCANXIETY’ CLUB, which happens to most of us before a scan. I am wishing you the best results next week. And you are so right ‘KNOWLEDGE’ is our most powerful tool!
Dukenuken,
I am somewhat concerned about my lungs. I had non calcified nodules in my lungs, which were too small to biopsy. Mayo was concerned about them initially, but since I’d recently had pneumonia in Jan and probably at least once in 2013, it was decided that most of them looked like inflammatory problems left by an infection/pneumonia. My followup CT scan at Mayo is just for pelvis and abdomen, so it seems that they aren’t concerned with the lungs any longer…but with all the initial fuss, I’m not getting more concerned. Paranoia is setting in as I get closer to that CT scan on April 8th as well. Thanks for the info on your chemo regimine. It seems that basically, most people start out on Gemzar and a platinum of some kind. The platinum one’s possible side effects really has me scared. I am diabetic and had a heart attack back in 2002. I know though, that Mayo is most likely going to strongly suggest chemo because of finding a small, satellite tumor next to the big one during surgery. I know the choice will be mine to make, whether to do chemo or not, but it doesn’t look like I really have a choice, when I realistically look at the facts of that 2nd tumor. Thanks again for replying. This all has helped me to have some idea of what to expect….knowledge is power!! Julie
I am farther down the road than you are, so I have fewer options. I was diagnosed only after it had spread to my lungs and lymph nodes. Onc hit me between the eyes with “Unless you start chemo now, you will be dead in six months.” Not the best bedside manner, but it got my attention. Started chemo in July 2013 with carboplatin one week of three and gemcitabine two out of three. Lately continuing with gemcitabine only two weeks out of three to give my kidneys some relief. Sounds like they’ve backed off like they suggested for Matt. Will see what CT scan shows in a few weeks.
This site and the people on it are the best thing in the world. People I see every day are truly supportive but they don’t understand what is going through my mind. And, unless someone is in our position or is a supporter of one of us, they never will. As far as tears go, sometimes you can get by with a few kleenex tissues but other times require a roll of Bounty towels.
I know what you mean by not leaning too heavily on people. You don’t want to wear down your support organization. That’s where we can help. There are so many here to share with. The following is based on a line from a novel by R. A. Salvatore: “Where there is darkness, friends joining hands bring light.” There are many combinations of words that can be substituted for “darkness” and “light”. Pick the ones that work best for you.
Iowagirl,
This is what the Onc @ Mayo recommended as I met with him while in bed recovering from surgery:
“We reviewed with Mr. Reidy that we are hopeful that this tumor was completely resected and node negative. Despite this, I think the recurrence risks are still significant. Given the rarity of the tumor, there are no prospective randomized trials regarding the value of adjuvant therapy, but retrospective analyses would suggest there is likely some value to this.
In general, I have recommended six months of adjuvant gemcitabine as a very reasonable starting point for discussion. This is the most active single
agent in this disease and does have proven adjuvant benefit in pancreatic ductal adenocarcinoma. This is often well-tolerated with only a few severe side effects such as TTP and pulmonary fibrosis.In metastatic disease, the addition of cisplatin to gemcitabine improves response rates and progression free survival and overall survival. He understands it is unclear whether that means it would be of further adjuvant benefit, but if the physician and patient wanted to err on the side of being more aggressive, this is also quite reasonable.
One could consider gemcitabine and cisplatin in the day 1, day 8, fairly low dose platinum schedule as outlined in the New England Journal of Medicine phase III trial in advanced disease and perhaps attempt four to six cycles of this.
I would certainly back off early with the cisplatin given the unknown benefits if he ran into early troubles with renal toxicity, neurotoxicity, ototoxicity, or other toxicities.”
Iowagirl wrote:Matt, I really appreciate you replying to my first post here. You are the very first person who seems to understand exactly what I’m feeling right now. I’m considering finding a therapist to talk with…..heck…at this point…my out of pocket is more than met…why not. I’m glad to hear that is helping you. What were the long term effects of the chemo you mentioned? I’ve been trying to look into this, but since I have no idea what they have in mind, researching it is a shot in the dark. I think that because I had a small satellite tumor along with the main tumor, my survivability goes down some, and intrahepatic tends to come back more frequently from what I’ve read. What the heck….all bile duct cancer is bad stuff. I, too, am hoping to be in the 60-70% chance group in which it doesn’t return. Really….I am soooo glad to hear from you though. The emotional and anxiety aspect of this and reactions of people around me just has me feeling out of control. I am quite certain that most everyone who has been diagnosed with cancer of any kind has these feelings to some degree, but when you get a diagnosis of bile duct cancer….or pancreatic cancer….some of the more aggressive and resistant cancers and you hear the numbers, it’s more depressing.Dear EVERYBODY….Oh…THANK YOU for your welcome and reception. I appreciate the replies so much and the answers to my questions.
I reread the report from Mayo and it mentioned chemoradiotherapy as a possible PRE-surgery possibility, but dependent upon what the surgeon said. The surgeon told us that they were finding that sometimes it was advantageous to do it, but that in my case, she was ready to go ahead with surgery if I was. I believe that the reasoning for doing therapy before surgery was to shrink an otherwise large tumor before trying to remove it. My tumor, at 5 cm was still something she felt he could do laproscopically, which is her preferred method of surgery whenever she can do it…even stretching the limits. Because of my weight causing some laproscopic difficulties, I had one extra 3 inch long incision besides the 5 other laproscopic small incisions, and they used a wound vac on that after surgery to help it heal better and not get infected. I happen to also be an insulin dependent type II diabetic, which could complicate healing.
Interestingly enough, I have discovered that having a spontaneous blood sugar low event can be a sign of liver cancer. I just happened to have had one a week before the tumor was discovered. My blood sugar went down to 43
…very scary….and I mentioned it to my GP when I saw her the next week. However, I’d been actively dieting for a year and a half, and had lost about 50 pounds at that point, so we chaulked it up to me being less insulin resistant due to weight loss…that is….an improvement in my type II diabetes. Weight loss was not a symptom of my cancer….I worked and paid dearly for each and every pound I lost. I even gained 8 pounds over last Christmas…and had to actively work even harder to lose it again, which I did.I think I forgot to mention in my introduction post, that all of my blood tests were totally normal….the usual CBC with liver function tests, as well as the blood marker tests for various cancers. There was absolutely NO sign that there was a then 4.3 cm tumor in my liver other than actually seeing it on a CT scan. My liver function tests in the hospital right after surgery were slightly elevated from surgery itself and just a week or so ago, when my local GP had a blood panel run, everything looked back into the normal range or just on the edge. I’m slightly anemic from the surgery, so have been eating red meat, fortified oatmeal with raising and just added baby spinach for munching…all good iron sources. My appetite has come back as the swelling from surgery has lessened. I had gained about 18 pounds of fluid weight from surgery and that suddenly started dropping off about 2 weeks post op.
I’m going to take the weekend OFF from research…the sun is finally shining here in Iowa and we are promised temps in the 50s…whoohoo….try to find something fun to do with my wonderful husband, kids and grandson. YES, that little guy IS the best medicine. When all this first started, one day, he came up to me and put his little arm around my back and just patted my back. It was obvious he knew something was really wrong. He’s always shown signs of empathy…even as a 1+ year old. I’ve babysat him 5 days a week and then last year at this time for two days a week since he was 2 months old, so we have a pretty solid relationship with him…both my husband and I do. He wants to have a Papa-Juwee day again again, but I can’t lift more than 10 pounds for another week or so. And, if he shows any signs of being sick….the kids don’t bring him over. Of course, he’s almost three…and in day care…so he catches everything there. It’s been hard not having him here with us….thank goodness for Facetime on the iPad. But, he’s healthy again for now, so we’ve enjoyed our time again…and he IS truly the BEST MEDICINE. He cracks us up so much with some of the things he says….and the laughter is once again creeping back into our home. Oh….and I’m driving again…short trips….and yesterday, I went for some shopping therapy. I bought an outrageously expensive throw for our bedroom. For me…that’s being optimistic about the future!!! When the going gets tough, the tough go shopping!!!!!
Hi iowagirl, My boyfriend only had the one tumor and there was no arteries involved and the tumor was easily removed. It was only attached to the gall bladder but the gallbladder was not infected by the cancer. He did however have 1 lymph node affected so i think that along with the high recurrence was the deciding factor. It’s hard because you are already feeling beat up fom surgery and then you get even more beat up with chemo. He must have said over and over ” i don’t understand why i need chemo if the doctors say I am now “cancer free”. The doctors told him if he were their son or relative that they would highly suggest him taking the chemo. My bf like you has always been overly educated when it comes to the medical field. When he or a family member is sick he will go full force on getting the best treatment and asking questions and getting the treatment needed. In this case, i think it was just too much of a shock and quite frankly too scary so i took on the role of searching the internet in the hopes of educatung myself. I must say that this site has been a tremendous source of information. It is real people living this and i am learning from their experiences.
The chemo he is on is gemcitabine 3 weeks on and 1 week off, they also wanted to start him on Xoleda pill form 2 times a day one week on and 1 week off but due to the high stress level of my bf regarding the side effects they decided to wait after the 1 cycle of gem to see how he does before he starts the xoleda. His first treatment was 3/17 and other than some fatigue he did well. His white blood and platelets were too low on the folowing week so they did not give him chemo. Monday he will go back and hopefully his numbers have gone up but the only thing is he now has a cold. In the 15 years we have been together i do not recall him ever having a old. He is juicing 2 times a day and sticking to a high protein diet and i beleve that has helped him because although he has a cold he feels great otherwise.
Good luck to you and may God be with you to help you make the right decision. The fact remains that with or wihout the chemo this nasty cancer can make an appearance. You have to do what you feel is best for you.
BTW..he also takes a half xanax every now and then to take the edge off. The stress and anxiety alone can do you in.
Let e know what you decide.
LornaDear Iowagirl,
Welcome to the forum and thank you for sharing your experience. I can’t comment on the guilt that you feel as it was my sister that had CC. I fail to see though how anyone can move on emotionally so quickly from a disease like this, regardless of whether it was diagnosed early, less severe or been told your cured. Use this forum to get the support you need and to vent your thoughts. Someone can always relate to where you are and help to get you through and no one will ever judge you for what you write.
X
Hello Iowa girl and welcome to our extraordinary family. First of all I want to give a BIG YIPPEE on your surgery, which is our favorite word in the world! Actually the way you are feeling mentally is ‘normal’. #1 It could be from surgery or #2 it could still be the effect of even finding out what you have. There is absolutely nothing wrong with asking your ONC for a little help. I had never taken an anti depressant until December and all of a sudden I could not stop crying. My Gastro guy put me on Lexapro 10mg (very mild) to help take the edge off and it has worked for me fantastically with no side effects.
You do have a good attitude and attitude is everything, sometimes it just needs a little tweaking. Notice I didn’t say twerking, I said tweaking. LOL
Isn’t your little munchkin (Grandson) just about the best RX ever? BTW we have a saying around here and that is we try to remain realistically optimistic.
Wishing you the very best and please do keep us posted as we are here, you are not alone.Lorna, Thank you for your reply. I’m sorry to hear that your boyfriend also has this awful cancer. As you know, he and I have the same subtype of bile duct cancer. May I ask, how he decided to go ahead with chemo and what type/s he is being given? Did he have one lone tumor or more than one as I did and did he have any lymph node involvement?….if you wouldn’t mind sharing with me. I go back and forth on the idea of doing chemo, but it was already mentioned before I left Mayo on March 3, so I know it is going to come up…or at least I expect it to. I know that the extra small tumor lessens my chances some, but everything else looked good. I’m still trying to figure out from surgical reports if the main arteries were involved or not as that might encourage spread to other organs via the blood stream. I know just enough to be “dangerous.”
I’ve been asked by specialists if I’m a doctor because I speak their language and come prepared as best I can, but I have to laugh….NOT HARDLY! I HATED biology in school and only educate myself about medical stuff because we’ve had so many awful experiences in the past, and in some cases, actually having doctors bold face lie to us. You really do have to take control of your own medical health and treatments and not leave it up to a doctor to spoon feed you everything. When they go home at night, few doctors sit at their computers or medical books, researching what might REALLY be wrong with you. I really would like to know more about the decision making process your boyfriend went through to decide to do chemo. He is very lucky to have you researching for and with him. It’s rough for me…because I’m usually the “tough” one in the family who keeps it all together when there’s a crisis…especially medical ones. But, my husband has been super supportive and our marriage of almost 39 years (I’m almost 62) is stronger than ever. We’ve been through a lot together over the years. We have a wonderful son and daughter-in-law and little almost three year old grandson. They have been fabulous through this. But, I don’t want to lean too heavily on them right now….nor just sit and cry all the time in front of them …which would make them feel worse. I try to tell people that I’m being realistic, but hopeful……..but most people don’t seem to get that. I think there’s so much hype about the strides in other cancers, that they think all cancer is close to curable. That’s just my theory….maybe it’s really not the case….maybe it’s just that they don’t want to deal with the negative potential. Well, I’m thinking “out loud” again. Thanks for being my therapist tonight…..and oh yeah….I’m crying. I can’t seem to even write to someone with it setting off another crying jag. When does this part end?
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