iowagirl
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April 29, 2014 at 5:03 am in reply to: H. Pylori as a cause of bile duct cancer….has anyone researched this #81906
iowagirl
MemberTo anyone interested…..I presented my theory concerning H. Pylori causing bile duct cancer (specifically my cancer which was intrahepatic) to my GP when I went to see her last Thursday for an incision check (they aren’t healed yet, but greatly improved and closing slowly (at least slowly to me). She said she really didn’t have the expertise to hazard a guess even, but she could offer an H. Pylori blood test if I wanted to do one. I DID!!! …of course. We did it the next day while I was in the hospital having the chemo port installed.
Tonight, my GP called me about 7 p.m. …..and…..the test for H. Pylori was positive!!! The missing link of my theory was found in my opinion. I realize my speculations aren’t exactly scientific method, and may not apply to many of the cases. However, for those of us for whom who have no known risk factors for ICC, it seems reasonable enough to suspect H. Pylori may be the cause, esp since H. Pylori infection is so prevalent.
As soon as I am through with the antibiotic that the oncologist prescribed yesterday for whatever my infection is (probably under the skin in my shin) is done (7 days), then my GP wants me to start on a drug therapy of three antibiotics at the same time, which is necessary to knock out the H. Pylori. I asked my GP if this gave any credence to my theory, and all she could say was that she couldn’t comment to that….which is doctor speak for, “I have no way to prove that.” But either she was really humoring me big time by doing the H. Pylori test with no current symptoms, or she did think it made some sense. Maybe it was a bit of both, concerning the ICC diagnosis and all I’ve gone through the past 3 months.
Anyway, I’m taking this as positive …..though I”m not quite sure when having a diagnosed with a bacterial infection that is known to cause ulcer and stomach cancer is a good thing, but the good news is that it can be erradicated with antibiotics and if my theory is right, no more liver cells will be damaged by the H. Pylori infection and I won’t see this grow again. Oh….yeah….but I’m still doing the follow up chemo to kill off any possible stray CC cells that may be lurking in my system. I’m delayed again with the chemo, but that’s another story for another post. For now, I have renewed faith that everything IS going to be okay. I just must get through what I have to get through and hope that bigger tumor didn’t already seed and if it did, that this chemo may knock them into the next solar system.
Julie T.
iowagirl
MemberPorter, Thank you for chiming in and good luck when I do the first chemo infusion. I do appreciate any of this personal experience type information. It seems that your experience is the most typical from what I’ve read and goes along with the data sheets I was given. Both of my oncologists contradicted each other, especially about the hit to the immune system. I’m surprised to hear that Oxaliplatin is going harder for you, because both of the oncologists said that it was easier on the body as far as side effects, but wasn’t usually used first because of cost and some insurance companies wouldn’t agree to pay for it unless Cisplatin failed or at least was used first Since I’m now retired, I can take the time to rest if needed…or go for a walk…in other words, to concentrate on “me” instead of all those customers for a change. I know about steroids and jitteriness, as I’ve taken them for severe asthma in the past, though only a couple times and for short durations. It wasn’t something I could take and do my cake decorating business very well….I had a tendency to poke the cake decorating tip right into the side of the cake from shakiness.
It was kind of an icky feeling, but not something that made me feel that bad to not take them.
April 28, 2014 at 8:02 pm in reply to: Treatment for abdomal and incision pain after resection? #81823iowagirl
MemberLola, My incisions didn’t cause that much pain, except for the first two days post surgery as long as I was stationary. As soon as I moved, they hurt. The hospital did offer Oxycodone, which helped considerably and we timed taking it for shortly before my getting out of bed and walks. Otherwise, in-between, they gave me large doses of Advil or Tylenol. I still had to take medications for a couple weeks after I got home before I felt more comfortable and well enough to ditch them. Gas pains were indeed a problem the night before and day I was to be released. They ordered milk of magnesia on top of the stool softener I’d asked for the day after surgery (they said they’d never had anyone ask for it, but I know that with narcotics, constipation is a problem because I’d helped with the marketing research of a long acting narcotic) and didn’t want the problem to get too bad. I also had requested prune juice.
By the time I had used all three…..success…..and no more gas pains. I kept using the stool softener or prune juice after I got home as long as I was using the oxycodone, even if it wasn’t every day.
iowagirl
MemberOh Lisa, I had to laugh out loud at your description of the issue of hair loss /growth and not having to shave legs or arm pits…..just a hoot. Yeah…it was too bad it didn’t happen in the summer….kind of a waste of a good thing there. Thanks also, for all the info on the side effects you did and didn’t have. When two oncologists tell you two totally different things, you don’t know who to believe any more. I trust the people who are here to give me their personal experiences more at this point. I know that each person will be different. My oncologist hasn’t mentioned any medications, like anti-nausea yet. I’ve heard that ginger tea drunk for the 3 days before chemo can help that, but I have no idea where to find it. Our big grocery chain here doesn’t have it. I hesitate to go to our Health /nutrition type store here because it’s in a very bad area of town. Have you ever tried it? I may try to find it on the web if it was worth doing.
Thanks also for the port info…..esp about your arm. That’s exactly what I’m experiencing. It’s improved a little today, but really feels crappy unless I have Advil in my system.
Julie T.
iowagirl
MemberCrissie, I, too, want to tell you how sorry I am for what you are going through and the loss of your dad. Autopilot seems to be a good word to use to describe those first days as you make your way through funeral preparations. Know that we all care here and will help you any way we can.
Hugs from Iowa Girl
Julie t.iowagirl
MemberThank you, one and all, for your support and suggestions for my temp problem. This morning my temp was 97.2.
We went to see the oncologist at 4 p.m Sunday and his conclusion was that it was an infection in my lower, right shin, based on the skin being very hot. It’s been reddish and warmer on that side alone, since 2010, when I took Metoprolol ER as a replacement for Atenolol twice a day for irregular heart beats I’ve had for years. (I wasn’t having problems…she just thought this would be less trouble). My lower legs immediately swelled which I attributed to sitting a lot while caring for that baby grandson. However, my voice became hoarse and I coughed all the time. I also had times when food would stick in my throat and make me gag. Eventually, I found out that I was actually allergic to the Metoprolol (swelling throat) and the exaggerated leg swelling was a side effect of Metoprolol (and sometimes Atenolol…but from that, I only had mild swelling).
I don’t know if the temp I really from the leg or not, but after taking two doses yesterday of the new antibiotic the onc gave me, the swelling came down in both legs for the first time in over a week and a half, so maybe something was going on different there.
As to what antibiotics to use, I have to be very careful to use something not too broadspectrum because after taking one called Cefdinir in Dec of 2012, I developed C-Diff in Feb of 2014. C-Diff is a very, nasty and extremely difficult bacterial infection of the colon and can cause death. Don’t want to repeat that if at all possible.
The antibiotic he put me on is an Erythromiacin…which can still cause C-Diff, but not as likely. I’ve been taking two probiotics a day and his suggestion was to take three.
Another bump in the road. Sure wish the road crew would get out and smooth out the bumps and holes a bit. We’re use to potholes in Iowa, especially after the winter, but that doesn’t mean we like them.
Oh….a note of interest….as we arrived at the oncologist’s office yesterday, the weather radio gave out a warning for the county to the south of us for severe storms. By the time we went through the pharmacy drive up to see if the script was filled (it was not), there was a warning for our county. As we parked at an angle to watch the clouds (we’re trained weather spotters), the sirens went off…yup….tornado headed toward us. We watched the sky very carefully and just as the pharmacy called us on the cell phone to tell us the script was ready, the warning was cancelled. Phew!
Julie T.
iowagirl
MemberOh wow…that is absolutely awesome!!! Give her a big hug from all of us. We’ll pray for continued good results to get that tumor so small that it will be no problem at all to resect and that it will be very soon.
Another Julie….Julie T. aka Iowa Girl
iowagirl
Memberwe called the local oncologist and after an hour+ he called back and after hearing what my symptoms were he wanted to meet me at his clinic (about 8 minutes from our house)….on Sunday no less….so maybe when we saw him on the 21st (Monday) he was having a bad day. The 101 temp has now dropped (after a shower) to 100.4. However, after I dried and almost got to my bed to get dressed, I was suddenly really dizzy and nearly passed out (I’m not prone to fainting). Sitting down didn’t help and I quickly laid down on the bed and felt better. The onc does want to see me in person, but mentioned getting an antibiotic going. Thank you. Thank you. Thank you, for helping me through another bump in the road. I was so upset earlier to think that the onc will want to post pone the first chemo on Tuesday. Saturday started the 9th week post surgery and I’m getting nervous to get moving on this for the best chance to kill of any possible microscopic cells.
As i posted earlier, we did called the interventional radiologist, who wasn’t interested unless my temp was 101 or over. We also called the cardiopulmonary dept where the implant was done….but got the same run around. When the temp hit 101, and saw your replies, I skipped both those people and called the oncologist directly as the others really don’t have a skin in the game concerning the chemo to start on Tuesday. I’m sure my GP would have said to call the oncologist or the interventional radiologist, so I by passed her also.
Will post later to let you all know what he said about this.
Julie T.
April 27, 2014 at 3:41 am in reply to: H. Pylori as a cause of bile duct cancer….has anyone researched this #81905iowagirl
MemberLainy, Thanks for reminding me about the search function on here. I didn’t think of looking in any of the posts. The deal with H. Pylori, is that it does sometimes lodge in the liver and there, as an infection, it would cause inflammation and inflammation eventually causes cellular damage to the lining of the bile ducts. My GP told me that while the blood test can show positive even after H. Pylori is killed off….the blood test also has false negatives…a pretty good percentage. There is a breath test and poo test which are more accurate…but not available here and she thinks maybe only in a “study” situation. I haven’t looked further into that do to all the other stuff going on.
I’ll check out what the search function pops up. Thanks again……Julie T.
iowagirl
MemberWhat a happy dance piece of news to hear amidst all the turmoil caused by CC. Congratulations on your marriage.
Julie T.
iowagirl
MemberGrandson therapy worked its magic. The minute he saw us through our car windows as we drove up, I didn’t think about the cancer again. Oh, I did think about the port because of the discomfort, but strangely enough didn’t associate cancer with it today while we were there. Little Robert took his grammy Julie for a walk while he mowed the sidewalk with his play lawnmower. I’ve left my pity party behind me for a while. “A child shall lead them.” When my son saw my post, he emailed me and then today took me aside and said, “Mom, you are stronger than this is,…you are going to beat this.” Yes, he is a wonderful son. I wish I could take total credit for the man he’s become, but from the time he was little, it was apparent he was intuitive and compassionate. We just didn’t happen to really mess up parenting too badly.
I almost did not post last night, afraid of how it might be received, but I had to vent somewhere and I felt comfortable to do it here. The really bazaar thing was…it wasn’t the cancer…it wasn’t the port fiasco and having it hurt that put me over the top, it was me sitting down to check my blood sugar, get my shot and night meds. I just broke down sobbing very suddenly, overwhelmed by everything. Thank you new and dear friends here on the boards. I know I’ll have another bad time on Tuesday this week, when I start chemo. But, at least I can look at that as something I am doing proactive…and can count down and see an end…if not permanently, at least for a while. I don’t know what the future is going to bring…no crystal balls…and maybe I don’t want to know if it’s something bad….but if it’s something good, I wouldn’t want to spoil the surprise before I unwrapped the gift. Thank you all for your support last night and today.
April 26, 2014 at 10:11 pm in reply to: Defining the Role of Adjuvant Therapy: Cholangiocarcinoma and Gall Bla #80893iowagirl
MemberMarion, do you have any info on when the results of one or more of the studies will be released on adjuvant therapy following surgery?
Julie T.
iowagirl
MemberOlga, I don’t have a lot to add, other than I had at one enlarged Hilar lymph node (near the liver). When they did my surgery, they removed 6 of the Hilar lymph nodes and the pathology showed that there was no cancer in any of the removed lymph nodes, including the enlarged one. Lymph nodes can be enlarged for various reasons, and in particular if there is an active disease process.
Hugs from Iowa,
Julie T.
iowagirl
MemberMatt, I understand your questions, as you and I are going through some of the same issues at the same time. As a post surgical curative intent CC patient, we’re told that there is a chemo we can do that might or might not kill microscopic cancer cells that can’t be seen and may or may not be in our bodies still lingering after having the visible cancer removed. It’s an awful decision to make, to subject yourself to the chemo for which may make no difference in our outcome and survival. I made the decision to move forward with the post surgery chemo, in hopes that it really isn’t necessary, but on the off shoot chance there is a cell or two, the chemo might kill them. Today, I had a port installed in my chest….one hour procedure in the hospital by an interventional radiologist. Though I was awake the entire time (even with conscious sedation, I got through it okay (except for when the Int . Rad. doing the procedure used my abdomen for a table for his instruments…and let them drop directly on the still healing incisions). But, right now, I can’t turn my neck, can’t raise my right arm, can’t swallow without some pain, and in general, I hurt and just am sick of this whole cancer crap. What’s new? We all are tired of it. There ARE bad days…and this was one of them for me. So, for the next three to 5 months I will go through 4-6 rounds of chemo of three week intervals with Gem and Cis and hope and pray it will be the last big treatment for this. I have a pretty good idea of the odds of this returning, even after doing chemo, but I don’t gamble…..I get nervous putting a quarter in a slot machine, so that is why I’m doing the chemo now. AFter I wake up in the morning, for a few moments, I contemplate getting out of bed, getting a shower…and then, it hits me…oh yeah…the cancer, “I have cancer.” Will that ever go away? I doubt that it will ever go away, but am sure that, in time, it will not be the first thing on my mind once I”m through with the chemo. I firmly expect that I am not going to have a recurrence, even without the chemo. But, I’m married to an electrical engineer and they typically “overbuild” things….deal with redundancies to avoid problems. I view this chemo as a redundancy….for that “just in case,” failure of surgery. However, if the chemo was a sure thing…that they knew it worked after surgery for microscopic cancer cells, it would make the decision a no-brainer.
Julie T
iowagirl
MemberTom…have to laugh at the “praying for poop”. It reminded me of when my dad was ill, and my cousin put him on a prayer chain to “pray for pee,” because his kidneys had shut down. I do get the anxious part….wondering about every little ache and pain. Since my surgery, …esp recently, I’ve had a pain in one spot in my abdomen for a couple days….and I’m just about ready to call the doctor, when the next day, it changes to another location…and on and on. I find myself guessing where it will turn up next, but since it’s fickle, I doubt it is anything serious…more likely nerves disturbed during surgery….maybe regenerating…or could even be intestinal pains from food moving around a corner, the latter being something we’d normally ignore. But boy…do I understand. I haven’t even bothered to tell my husband anymore…..I’m sure he’s thinking I’m crazy too at this point.
Sometimes, it takes just a bit longer for some than others to get the intestines to wake up again. My husband had a third of his colon removed, along with a huge mass, and going home in two days, ended up being a bit more than a week. He didn’t want to eat….felt awful. Suddenly, he felt better, ate something and was ready to go home.
When I had my ICC surgery 7+ weeks ago, it took three days post op and the help of stool softeners, prune juice and Milk of Magnesia to get things moving. Before that, I had some really nasty intestinal pains. It took up to 4 weeks post op before I could eat anything but a small amount of food.
I’m pretty new to the boards, having been just diagnosed in Feb and surgery at Mayo Feb 28th, so I don’t have any great words of wisdom about the technical aspects of this disease….yet…..but I’m getting there, thanks to the help of wonderful people who haunt these boards.
What I do have though, is a really huge heart and broad shoulders and if you want to unload on someone…you can always email me privately through the board. While I’m the patient in this instance, I’ve been there for my husband as the caregiver a couple times over the past 8 years….for lift threatening illnesses and I do understand. Each person’s journey with this disease will be different, take many turns, but the common bond is that we all want more time….for the patient …more time to live…and for the caregiver…more time with their loved one. Each setback is frustrating…and just plain beyond scary. You and Ben hang on to each other…hold each other up…..and don’t forget, that this disease can not take away love or hope unless you let it.
Hugs from Iowa,
Julie T. -
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