iowagirl
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Kat hi,
Welcome to the boards.
I am also an ICC patient, diagnosed stage T2B in Feb 2014, and was forunate to have a resection a month later. In Nov, 2015 scans showed that the cancer was back with another small tumor in an operable location in the liver. That was followed a month later by another resection (smaller deal) than the first one. It has been over two years since my diagnosis and while the cancer has returned once, it was a long time out and the oncologist and surgeon at Mayo are hopeful that the second tumor was a stray cell from the first surgery. ONly time will tell. Meanwhile , I am trying to live life and enjoy my family, son, DIL, two little grandsons and husband. I have to admit that I do obsess about the cancer, that it may come back again, but for now, I”m trying to live my life as normally as possible….not just for me but for the sake of my family. But, it’s not easy for sure. Time has helped some and I know that being okayed to have surgery and having that be successful so far has helped considerably dealing with the diagnosis over time.
Julie T.
Oh Kathy, I am right on the heals of Marion with the tears of joy for you and your family. Enjoy every minute you are given and hug those kids for all your worth. You deserve the good times to come your way.
Julie T.
Kris, I can hear the loneliness and fear/desperation in your words and I am so sad for you to have to be alone through this latest CC adventure. Adventure makes it sound fun….which it certainly isn’t, I know. It’s time to take a deep breath and just push on through, as hard as I know that is. You’ve gotten new sequencing done and there’s the hope of future in a possible clinical trial. Even if your mom is no longer here, you can still talk with her. Y ou absolutely have my prayers for your scans and finding a new treatment plan. I think of you often. Hugs!
Julie T.
Right on Tiah and Gavin…..I don’t know how many times I’ve heard friends of mine make some remark about “big pharma” or that “they” have a cure for cancer but are keeping it from people because chemo and other treatments make them big bucks. Sigh…and then there are the alternative therapy people ……and the ones who insist that y ou just need to think positively enough.
Julie T.
Daisy, My oncologist prescribed melatonin too. I take 5 mg every night before bed. There’s even a chewable version of it. You can get Melatonin in most grocery stores and pharmacies. I take a blood pressure med that screws around with my dreaming ….gives me nightmares. But, chemo caused me to wake up many times a night. Now, I still have the bad dreams, but don’t wake up more than once a night.
As for pain following resection. I am now 2 years and one month out from the first resection and no longer have pain from it, but I had pain that was intermittent for up to 18 months at least and then it seemed to settle down. It was never bad pain that I needed to take something for, but more like a sudden tweek…a “gotcha”.
Since the second resection in Dec 2015, I have had more pain again…..only just over one of the portal incisions which may be from a weakening in the abdominal wall….not a full hernia, but enough to cause some issues with bowel contents as they pass by that area. Hope this isn’t too much info……but I notice that after a BM, the pain subsides for a day or two. I had some seriously awful pain over that portal incision for a month following surgery. Something was apparently entrapped …a nerve maybe…..we don’t know, but putting hot packs on it for three-five days resolved the issue.
At my second resection, the surgeon spent 45 minutes of surgery time just cutting through adhesions before he could even SEE my liver, so I suspect that the intermittent pain from my first resection was from the adhesions that formed. He had to free up my stomach even. Apparently, it was pretty much a mess to get through.
Julie T.
Wonderful news…..we love to hear the word surgery. Where will surgery be done? Where is the tumor located?….inside the liver, in the main bile duct or outside the liver and main bile duct? Hope you don’t mind me asking. We will have prayers and good thoughts directed to your husband on the 14th. That is the day I go back to Mayo for my first scans since my 2nd resection in Dec. It’s going to be a good day for both of us….right?!!!! Right!!!
Julie T.
Scott…..I will have to look up Moncton, New Brunswick on Google to see what’s there and what it’s like. I can understand the “need” to go with a new Bass Pro Shop and Cabela’s. LOL. I don’t think my husband could resist that either. What kind of dance does your daughter do? How long will you be there? Maybe you could sit in the hot tub up to your waist in the water????? Oh…..and weird as it sounds……if you can find some “Press and Seal” (don’t know if that have that product in the grocery store where you are), it was recommended to me to use to cover my incisions when I had to keep them dry in the shower while they were healing. I wouldn’t go swimming with it on…and it does look a little weird….but I was able to take a shower with it over the incision. I’m sure you’re going to enjoy the trip however it is. Sometimes, it’s just good to get away.
Julie T.
Scott, I agree with Marion,…..most port are put in without any incidents….pretty simple procedure and IF you were awake by chance, I think you would be surprised by how ho-hum it really is. I just wanted you to be aware that the anesthetic isn’t always 100%, so you need to speak up if you are awake and aware. The first time, I would have preferred to have been all the way asleep, but since I wasn’t, I found out first hand what it was like. I’d do it again without the sedation if they’d let me, just to not have to stay around as long. But, you have to be a very good patient and lie very, very still.
Where is Moncton?
I think after 24 hours, you should be cleared to drive. I don’t remember any restrictions, other than not getting the bandages or incisions wet for a couple days. But, until you are okay, sit back and take it easy and let others do the driving and other stuff that requires a clear head and fast reflexes.
). Have a great vacation ………yoiu deserve it.Julie T.
Scott,
Head’s up. When, I had my port put in, I was supposedly supposed to be given stuff to put me out for a while. I was wide awake during the whole procedure anyway and aware of everything going on. He still used local anesthetic, thank goodness, so I did not “feel” pain per se, but I knew everything he was doing the entire time. At one point, he dropped some surgical instrument on the incision area of my resection surgery (and the instrument was heavy). I growned because THAT hurt….and he asked, “Are you awake?” I told him, “YUP”! He instructed the anesthetist to give me more of whatever she had to put me asleep. That didn’t do anything either. I don’t know what it was that they were using, but if you don’t want to be awake….make sure to tell them that…..and if you find yourself cognizant of what is going on, speak up. I just lay there and kept thinking that I’d get put out any time soon. It was a very long hour to go through like that. I’m a pretty tough cookie when I have to be, so I got through it okay, but it sure wasn’t what I expected to happen.
When I had the port removed, I had another doctor do that….and he did not use any anesthetic other than local numbing. I figured, what the heck….why not. He talked his way through the steps of the procedure, telling me everything he was doing, and it was over before I knew it. Since they only used a local anesthetic to numb the area, I was allowed to go home almost immediately. Otherwise, I would have had to have stayed for about 4 hours.
Don’t mean to scare you……I think it’s better to understand completely what they are going to do. ……Just make sure to let them know you do not want to be awake at ALL……not aware of anything….and speak up if you are. It seems some of the anesthetics they use for procedures like this are lighter than the ones they use for deep surgery or maybe it doesn’t work at all on some people. I remember when I had a cardiac catheterization, I was awake for the entire procedure, though they insisted I was asleep. (Only had my eyes closed, but I remember distinctly the conversations and hearing the doctor say, “It is 100% closed.” And…that wasn’t all I remember and it’s been 14 years. ).
Just get it done….you’ll be fine. Just be proactive for yourself.
Julie T.
Hi, I just wanted to add my 2 cents worth. I started at a local/community oncologist /cancer center. From the CT finding the tumor to the end of local testing was two weeks. At that point, I was getting nervous and decided to make my own referral to Mayo Clinic in Rochester, MN. I was given an appt two weeks out, which also made me nervous. Once I got there though, with my hand carried scans on CD, the biopsy slides already sent there by the local hospital, and results of all blood tests given to them verbally, things went very quickly. I met with an oncologist for most of a morning…..he went over my history again….and looked into the possibility this may have been a different primary cancer that had metastasized to the liver…..and then he set up a consult with a surgeon for later that day at 430 p.m. The surgeon said she was sure of what it was….CC…..and that she could remove it. By the next day at noon I was in surgery having part of my left liver lobe and a 5 cm tumor removed.
Things don’t always move that fast. I was told that the month from finding the tumor to surgery was actually moving fairly fast considering that I started here locally at a community based treatment center. I have since had a recurrence of the CC, and once again was okayed for surgery (Dec 2015), but had to wait a bout 3 weeks before I could get on the new surgeon’s schedule….mostly due to him being scheduled for vacation during the last week and a half of that time. But still, it was relatively fast. I had a friend here who recently had a gall bladder removed with constriction of some bile ducts and she couldn’t get a surgery date for over a month at the University of Iowa hospitals. It seems forever to us, I know.
So, I guess I’m saying not to.be afraid to go somewhere else. If they have to redo any testing S….it’s more than likely due to the original testing being in question, but I don’t think it’s going to stretch out at a big center where they are more familiar with CC.
Pain should not be tolerated. Talk to your doctor about getting your husband something for the pain he is experiencing.
Best wishes to you. Once you get things squared away, it’s going to feel some better…..that you are being proactive and actually DOING something. Sitting and waiting is the fodder for anxiety….I know…have been in that place many times.
Julie T.I will add what little more I can. I had a port that wasn’t put in very well/always tipped wrong which made for difficult access for my nurses. That said, if I needed one again, I wouldn’t hesitate to try another one and have it put in place…just by a different Doctor.
After the incision heals and the stitches dissolved, I had no restrictions. Once a couple days went by, I could get the area wet, though I gave it longer to be on the safe side. My Mayo nurse told me that whenever I had it accessed, to be sure that they applied the antiseptic for the full time (I can’t remember now if it was one or two minutes). I remember a nurse in the hospital was going to access it…..and I told her the Mayo instructions, and she casually said that she does it for 30 seconds and that was their protacol. I responded to her that she would do it the “Mayo” way if she was going to do it on ME. She balked a bit…..but I told her that I was going to time her….and that she should stop when she thought it was a minute. She stopped at 17 seconds!!! So, be sure that you watch that the person accessing does this important part for long enough.
I had no restrictions on lifting anything once the area was sufficiently healed….but it was never an issue because I was generally too tired from the chemo.
Julie T.
DAvid……Iowa Falls isn’t that far from me….about a 2 hour drive maybe. We’re in the Cedar Rapids area.
David…..keep on enjoying the tubeless status and better sleep. Good sleep is not overrated!!! I’m so glad to hear that you are ready for the next step in your battle with CC. Let us know what your oncologist has up his sleeve.
Julie T.
Matt…..That is just over the moon , incredible news!!! I am so thrilled for you that you have done so well with Keytruda. What a wonderful way to start 2016. And….of course, your success with Keytrude may have ramifications for other CC patients with the tumor genetic mutation. Hugs, my friend and congratulations.
Julie T.
