iowagirl
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iowagirl
MemberGood news and only good wishes and payers sent to out to your friend. I hope all goes really well and she recovers fast with good news.
iowagirl
MemberFollow 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.iowagirl
MemberLainy, As to the Vit C, I had not considered whether Vit C would be an issue with diabetes. Sigh. Of course I am a type 1.5 , insulin dependent diabetic (the steroid, Prednisone, killed off some of my insulin producing parts of my pancreas about 18 years ago . I also have insulin resistance due to weight, which is why I am a type 1.5….a not so well known type). ANYWAY…..I digress. I am concerned about how my diabetes will react if I am given steroids during chemo. I just was given two steroid pills to try to forestall a possible allergic reaction to a CT Scan contrast. With the current two insulins I take, a long acting background insulin and my short acting mealtime insulin, I was coming up with blood sugars last night and this morning of 223 and 235. Part of that may be due to two of my surgical incisions having healing issues (I somehow popped two incisions which led to weeping and tissue death….but superficial according to my surgeon…healing in a week or week and a half). That can also send up blood sugar. I’m going to update my intro post with the news from my Mayo appt today.
iowagirl
MemberThank you for the info on the Vit C. I don’t doubt that it may have some kind of good effects on the body, but it sounds like it’s untested and in general, it’s used more by wholistic type doctors.
iowagirl
MemberKris and Lainy, Thank you for your reply. It’s almost 4 a.m. and I’m still up. I didn’t know if I could sleep anyway, but had to sort out what I wanted to keep from my cake shop (retired in Nov after 29 years). I just sold all the equipment and supplies, except for a small amount to make birthday cakes for our little grandson, moms, husband, son and daughter-in-law. It took me way longer than I thought it would. But, the good news is that I finished and now the buyer can come in next Saturday to box up everything and get it out of the house. I’m tired enough not to feel much of anything….opps….dang…soon as I wrote that, the tears started welling up. Okay….I know I have to suck this up and wait to see what Mayo says and what the scan shows. None of my blood tests ever showed anything out of the middle of normal for any liver counts, until the one done three days after surgery, which was to be expected. Within two weeks, everything was back to normal except for a slight anemia and other counts related to just having had surgery. My C19-9 was never out of normal….none of the blood marker tests were ever out of normal, so I can’t look to those as a way to tell if the CC is coming back. Maybe I’m one of the 10% that the C19-9 doesn’t work for.
Back to my question about seeding. I didn’t know about neural pathway seeding. I see a place on the pathology report that says “Perineural Invasion:Not identified.” It also has a place that mentioned Lymph-vascular Invasion and the only remarks are that the Major Vessel and small Vessel Invasion are not identified. I don’t know if “not identified, ” means that they didn’t see anything, or it wasn’t something they could tell from the pathology material.
Meanwhile, I have a problem with one of the laproscopic incisions…..it seems to be opening up and getting worse after 5 + weeks post surgery. My husband thinks they need to clean it out and start over with some regular stitches instead of the dissolvable ones. It and the main incision have been draining out junk for the past two weeks. The main one has some of the same problems, but not quite as bad. My GP said it was normal healing fluids, but I think the laproscopic one is more than that at this point. No sense to go see her tomorrow before I leave because I’ll see the internist and surgeon on Tuesday. If it weren’t for the laproscopic incision causing trouble, I wouldn’t be hurting right now. It seems pretty inconsequential, in the grand scheme of things, compared to the ICC, but it’s just one more thing to worry about right now.
Okay….I’m a little more calmed down now and I think I can go to bed soon. I have one more question that I”m going to post separately as it has to do with post surgical treatment.
Thank you again…..it means so much to have a sounding board. When I tried to talk with one of my best friends today, she told me to get off the internet. Sigh.
iowagirl
MemberFantastic news!
iowagirl
MemberDukenuken,
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
iowagirl
MemberCarla, I’m very sorry to hear that you have been diagnosed with ICC, but you have come to the right place for both emotional help and information. I was also newly diagnosed with intrahepatic CC, but with a tumor much smaller than yours (5 cm). I know that I’ve read personal stories of people with much larger tumors that have been shrunk by chemo over a period of time and even some who have been able to have surgery after the tumor had shrunk enough. If you aren’t at a major cancer center, you need to get to one. I personally wouldn’t wait, but I don’t know all the details of your situation. When I was going through the diagnostic period, I finally got irritated with the delays, waiting 5 days for a pathology and then no real answers, so I initiated an appointment with Mayo Clinic in Rochester, MN, even before the last of the testing was done. Mayo Clinic took the leftover biopsy material and in less than four hours, had redone the entire slides and reread them…something my hometown pathologists couldn’t get done in less than 5 days. There’s no excuse for delays like that, but unfortunately, it’s the way most smaller town medicine works. (I live in an Iowa town of 150,000+ and it’s still small town medicine.) I would encourage you to do as Cathy suggested and try talking with some of the CC “super doctors,” such as Dr. Chapman and others via phone for a phone consult. Speed really is important with this cancer. If you ever need to unload….there are many of us here on the forum who will listen without judgment. This forum has some of the most caring people in the world on board and either they or a friend or family member has or is going through what you and I are. I just signed on myself, but already, I know that I can come here and there will be someone who understands and responds.
March 29, 2014 at 5:28 pm in reply to: IIIntrahepatic post surgery…My story and welcome to it #81134iowagirl
MemberDear 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!!!!!
March 29, 2014 at 5:17 am in reply to: IIIntrahepatic post surgery…My story and welcome to it #81130iowagirl
MemberLorna, 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?
March 29, 2014 at 4:55 am in reply to: IIIntrahepatic post surgery…My story and welcome to it #81129iowagirl
MemberMatt, Thank you for sharing some of your experience with me….especially the emotional stuff. It’s driving me nuts! We have different types of bile duct cancer, but the mental part of this seems to be the same. My surgeon at Mayo Rochester, MN, was Dr. Kaye Reid Lombardo, who was excellent. Because I went up to Mayo as a patient with basically cancer of unknown primary (but highly suspected bile duct cancer) and the Mayo oncologists hadn’t received the results of my endometrial biopsy and ovary scans, they decided that I should see a gynecological oncologist instead of a GI oncologist. If I asked for them to take the new information into account, it would take another 1-2 days for them to look at the info and then call me back again to set up an appointment, which could have made my appointment even further out into the future. As it was, I HAD an appointment (in my hand so to speak) for a week away and in my mind, I was nearly crazy with anxiety and just wanted to get there. I was assured by Mayo that whoever I saw, would consult with GI oncologists very closely. My main appointment was with an internist/fellow in oncology, Dr. Domingo, who was there under a senior oncologist by the name of Aminah Jatoi. We did see Dr. Jatoi for part of the time, but fairly short. Until you asked, I never had thought to look up what her actual oncology speciality is….if she has one. She is not a gynecology oncologist after all. She is a Professor on Oncology at Mayo and is considered to be one of the top 25% of oncologists in the US if I understand correctly what I read. She has a number of oncology specialties, among which is that she is a leading expert in lung cancer. I felt very comfortable with her and in the short time we talked with her, I felt instantly more at ease. She looked at my information and test results and quietly came to her conclusions, asked me a few more questions and then told me what her thoughts were. I think the reason that we didn’t ask for her credentials was that things moved so fast toward surgery…which is why I went there in the first place, that it just never came up. I also see she is an expert in adjunct therapy/chemo. She agreed with our local oncologist that the primary cancer was probably bile duct cancer and not an unknown primary. I had/still have a number of uncalcified nodules in my lungs which she quickly said that she felt were not metastisis but instead were the result of pneumonia which I had just recovered from as well as probably at least one other pneumonia last year. The scars wouldn’t have had time to calcify yet. 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.
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