My Introduction

Discussion Board Forums Introductions! My Introduction

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  • #80298
    mbachini
    Moderator

    Dear Matt,

    I recall being in a fog, sometimes I still am, for about the first couple days after chemo. I continued with the antiemetic meds for about the same couple of days, which they always make me groggy. Then I was okay until the next chemo. Hang in there and keep up the positive attitude! Sending thoughts and prayers your way!
    Melinda

    #80297

    Hi Matt: Your journey with this disease has been similar to my brother Paul’s. He was diagnosed in late 2012, was able to receive resection of bile duct surgery, where about 45% of his liver was removed as well as the gallbladder. We also went to Mayo (Jacksonville, FL) and had 2nd opinion at Cancer Treatment Centers of America in Chicago. The surgery was done at Mayo in Feb. 2013. He did have chemo after the surgery and after recovering from all has been feeling great. Has had a lot of the “feelings” of things going on inside his body that he never felt before, but his doctor at Mayo was wonderful and was always willing to talk with him to try an aleve his concerns. Now he is at yet another crossroads as you are. Cancer has recurred and it is a tied to the original CC, where he had to have his appendix removed this past December and did another round of chemo after, but now has something growing around the abdominal cavity. Paul did well with the chemo, fatigue and appetite loss were his biggest demons. We are now talking to a hospital here in Charleston, SC that is doing a clinical trial for those that have had a recurrence of this cancer and did do chemo but it failed. If you would decide to go with a clinical trial, the ones that I found regarding this type of cancer, wanted to the patients to be off of the chemo regime for at least 3 weeks prior to starting the trial.

    You have a great attitude, which is really important, and also a will to continue on. Don’t give up, pray (it helps!!), stay as healthy as possible. Sounds like you had good health prior to your diagnosis also, as was the case of my brother, which is a definite asset for you.

    Please continue to keep us posted. You’re doing a great job. You have to be your own advocate in these situations, I have found, questioning and searching for what is best for you.

    Blessings to you and your family!

    Amy Speziale

    #80296
    pfox2100
    Member

    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. ;)

    #80295
    marions
    Moderator

    Oh, Matt…..unfortunately patients suffer from mistakes of medical personnel ….but you really had your share of, as they say “discomfort” and you rightly proclaim as painful.
    I hope that others chime in on the port issue, but I recall my husband mentioning slight discomfort for one week following the procedure.
    Prior to accessing the port for infusion his nurse placed a warm wash rag over the area – it helped as well.
    Hugs,
    Marion

    #80294
    lainy
    Participant

    Hey, Matt…….LOVE that Propofol!!! Poor Michael Jackson he loved it too much. I can’t take Fentanyl, does nothing for me nor did it help Teddy but I do always ask for an Epidermal and that helps for the first 2 days after surgery. I have made a decision about the Colitis and am probably going to do a Colostomy…will post more when I know more. I always like to read your posts as you are always full of positivity! Stay good!

    #80293
    mattreidy
    Participant

    Thanks Marion and Julie. Julie, I was “out” for the port installation. I made a point of being adamant about that. Not out enough to need breathing help, but I remember NOTHING.

    After a 6 hour surgery to fix a bile leak 18 hours after my original 8 hour resection surgery I woke up on the table after the took my breathing tube out. That was because they were manipulating me to take xrays trying to find a missing needle (!) and it hurt like heck!

    That story scares me and every anesthesiologist I tell it to so I make them hit me hard with fentanyl and propofol when they’re doing these “minor” procedures… ha

    Nonetheless, I can see what a difficult time they had with the port and it’s still tender a week later. I just didn’t have to be aware of it at the time and I’m thankful for that.

    #80292
    iowagirl
    Member

    Matt,

    1. I was also foggy and sleepy for almost every infusion of Gem/Cis….sometimes more than others….but always on day one, when I received both Gem and Cis. That wasn’t the case so much for day 8 of just the Gem. The foggy /sleepiness would start within hours of getting home…and go on for a day and a half to two+ days and then it was back to normal again.

    2. I was given the antiemetics via IV before being given the chemo. (They do it in separate bags…not at the same time). I sometimes used Atavan to relieve queasiness, if it occurred in the daytime. When it did occur in the daytime, it was generally about 3-4 days after I got the chemo infusion. I didn’t dry heave daily until after about round 4 or 5. Before that…..I didn’t have even queasiness even the several days after chemo ….until as I said…about 4 days later. Then, the first round, I was queasy for a couple days. Everybody is going to react differently to the chemo agents though.

    3. Glad to hear that your first infusion was uneventful. I think you’ll find that the Gem alone infusion is easier on you.

    4. I’m so sorry to hear that you had such an ordeal getting the port implanted. It sounds somewhat similar to mine, though even much worse when it was put in. I was awake during it all (were you?) so I was totally aware that the surgeon was having trouble getting the port to lay right in my chest.

    5. I didn’t hear any complaining in what you wrote. Your remarks and questions are valid and reasonable.

    #80291
    marions
    Moderator

    Matt…….you have reason to complain; don’t hold back. As far as I know, antiemetics will be administered each time however; it can be adjusted according to individual response.
    Hugs,
    Marion

    #80290
    mattreidy
    Participant

    Hi everyone,

    I started my first round of Gem/Cis chemo last week and will have my second infusion tomorrow.

    The installation of the port in my chest was apparently more difficult than normal. It took two hours and I’ve got about ten holes in my chest and neck where they attempted to thread the catheter into my vein along with a bunch of bruising to my neck and chest.

    As for the chemo itself, it’s been pretty uneventful. My only real complaint is that I’m foggy and sleepy most of the time. I’m not sure if it’s the antiemetics I’m on or just my body’s reaction to the chemo itself at this point.

    I did want to ask: Do most people continue to take antiemetics all the time while doing chemo or only for a few days right after an infusion?

    I’m sorry for what probably sounds like a bit of complaining… I’m finding myself using this thread as my blog in hope that it helps others in the future.

    On another note, I found this interesting: http://7thspace.com/headlines/504446/surgery_for_recurrent_biliary_carcinoma_results_for_27_recurrent_cases.html

    #80289

    Heh, bile duct thinner, yeah right. I meant bile thinner. Apparently it is polar bear bile, they never get liver/bile duct cancer so it’s synthesized and utilized now…

    #80288

    The radiation was one of those things similar to chemo… “we don’t know if this will help, we don’t know if this will hurt.” so I decided to run with it. The only downfall so far is the astimosis of the new connection point. The narrowing sucks. I can always tell if it is starting up again, I’m very sensitive to elevated bilirubin, so I start to itch and know something’s up. Floating stools that are a lot more tan versus darker color (nice water cooler talk, huh?). I’m on a bile duct thinner now that is a 2x per day pill but my doctor says only 1x per day is OK. It’s $250 per month and I’m on a high deductible plan so I’m trying to stretch that pill but may have to start the 2x per day if the itching starts up again… Best of luck with the port, when I had the PIC line put in for IV antibiotics, it was a snap and really helped. It let me go home and do the antibiotics myself instead of 3x per day going somewhere to get an infusion…

    #80287
    mattreidy
    Participant

    Thanks for taking the time to read through my journey and replying Derin. I’m so happy that you’ve kept the beast at bay! I’ll be rooting for that to continue for another 40 years.

    I find it interesting that you had radiation in addition to chemo in the adjuvant setting. I’ll have to ask if that’s something to consider at this point in my treatment. Thus far nobody has mentioned radiation.

    I’m scheduled to get my port tomorrow morning at 6:30am and then start the chemo the next morning. Hopefully my experience will be as smooth as it sounds like yours was!

    #80286

    Matt,
    Just read your whole thread, heck of a story. Very sorry to hear about the recurrence. My story is very similar to yours. very small tumor but on the bile duct, took right lobe of liver, half of left, gall bladder, and all of the bile duct and reattached small intestine to the remaining part of the bile duct. Unlike you, I did do the adjuvant chemo and radiation (Gem/Cis). I was told we don’t know if it will help or hurt, and I was 40 at the time so figured I could handle it. My surgery was on 9/14/11 and I’m still clean. I have had 2 astimosis strictures with tubes/balloons to expand the astimosis. First time last Feb it worked for 5 months. The tube was pulled this past December and so far so good.

    Regarding chemo, Never had any nausea due to the stuff they give you. It’s a 5 hour ordeal for Gem/Cis. 30 minutes of steroid and anti nausea, 30 minutes of Gemzar, 1 hour and 1000 ml of Potassium and magnesium, 1 hour of Cisplatin, and 1 more hour of Potassium and Magnesium again. You go to the bathroom every freaking 15 minutes after about an hour… the steroids jack you up too, I couldn’t get to sleep until 2 or 3 in the morning so I’d go up the road to the bridge and do some night fishing for fun. I did all of my chemo (5 cycles) via IV only, didn’t do a port. Each individual is different, I had good veins probably due to the weight lifting I have typically done in my past.

    Please don’t hesitate to contact with any questions. This is a great site and very supportive. I’m a slacker, haven’t been on in a while so I’m trying to catch up!!

    #80285
    dukenukem
    Member

    I agree with what Marion said about reading the scan. I just had a second onc and radiologist review my CT scan from last Friday and they basically came up with a complete reversal of the prior scan. No big deal until you realize it completely changes my treatment options.

    True story: My wife and had just come home from a sonogram of our first child and showed he Polaroid to my father who was staying with us. We didn’t tell him what i was. He looked at it and said, “What is it? Looks like a dog in a field.”

    Duke

    #80284
    marions
    Moderator

    Matt…..Imaging relationship to disease interpretation is a subject often discussed. The overall consensus appears to be that imaging results are only as good as the physician reading the scans. Basically, if the physician knows what to look for he/she will be able to identify the results.

    Thought to include some information pertaining to imaging:

    C-T (CAT) Scans – computed or computerized tomography.
    Can show precise location of tumor, defined shape, solid or hollow; provides clues to a cancerous tumor but not as concrete as biopsy.
    Not reliable in identifying tumors less than 2 cm in size.

    MRI (Magnetic Resonance Imaging) Scans – In many tissues, the image and detail are clearer than those with an MRI than a CT scan.
    For some tissues, MRI image is less clear than CT. Difficult to distinguish between Inflammation and scar tissue.

    PET (Positron Emission Tomography) Scans – picks up cancer activity at a very small level.
    Image not as clear as CT and MRI, inflammation can obscure other activities on scan and localizing exact location of tumor. Best suited for higher grade tumors, metastasis.
    Some insurance carriers won’t cover cost of PET Scan.

    CAT/PET Combo Scans – wave of the future, allows for anatomical detail of the CT and detection of small nodules of cancer cells by PET. Not yet widely available in many hospitals.
    Insurance coverage: don’t know.

    Good luck, fingers are crossed for everything to work in your favor.
    Hugs,
    Marion

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