University of Chicago Trial FOLFIRINOX.

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  • #75120
    kris00j
    Participant

    Many centers are now installing power ports. If it is an option, ask for one. It helps with everything, as it is accessed for blood draws, ct scans, etc. it definitely helps the veins in the arms!
    Good luck,

    #75119
    ceciliarose
    Participant

    Thanks for those tips. We were fortunate to have gotten the emend on our first round of chemo. It has gone amazingly well( finishing Day 3) so far. I will definitely ask about Neulasta. Not sure what you mean, Shreitumic, about “second chemo infusion of each cycle”. Alison is getting the gem/cis every 14th day. We have had one treatment. She will get her port next week; haven’t heard about a power port.

    #75118
    scheitrumc
    Participant

    And hopefully they are going to give Allison shots of Neulasta. This should occur after the second chemo infusion of each cycle. Neulasta counteracts the loss of white blood cells. It is basically a booster for her immune system.

    #75117
    scheitrumc
    Participant

    Ceci,

    My wife had the Powerport inserted into the main vein near the heart. It made chemo (just finished 8 cycles of gem/Cis) much easier to handle. No needles each time. I highly recommend asking about the port.

    With respect to chemo, your daughter will most likely receive anti-nausea meds like Zofran right with chemo. For the next few days after each round, we used Zofran and compazine.

    After a while the toxicity of the cisplatin was tough and the Zofran didn’t do it. Our oncologist then started her on Emend intravenously at the start of chemo. What a huge improvement that made. Please ask about Emend.

    Good luck to your daughter.
    Carl

    #75116
    jscott
    Member

    Ceci,

    Here is the pattern for my wife:

    Wed. is chemo day —
    long day but not too bad (steroids + emend = ok :)
    Ativan at night to help sleep (every night actually)

    Thurs —
    Zofran in the am.
    Steroids and emend still working. Pretty good day.

    Friday–
    Getting a bit more tired. Zofran if needed in the am
    First few cycles had a slight fever from Gem on this day (99?)
    neck / shoulder pains (kind of like flu)

    Saturday–
    Worst day of the cycle.
    neck / shoulder pain
    worst fatigue

    Sunday
    much better

    Monday
    Mostly normal

    Tuesday
    Mostly normal

    Hope that helps!

    Jason

    #75115
    marions
    Moderator

    So glad to hear that everything went well.
    Chemotherapy not only targets cancer cells, it also affects the blood cells manufactured in the bone marrow i.e. white blood cells, and platelets. Nadir occurs 7 to 10 days after chemotherapy treatment, a point when blood counts are at the lowest. Please know that it is a normal occurrence and that it is watched closely by the physician. And, it is for this reason that a blood test is given prior to the next application of treatment. Drinking plenty of fluids will help flush the chemotherapy drugs through her system and meals high in proteins will aid in the production of fresh cells.
    I wish for continued success.
    Hugs,
    Marion

    #75114
    ceciliarose
    Participant

    Hey everybody. Thanks for all your input with re to my daughter Alison beginning gem/cis chemo yesterday. It has gone amazingly well so far; have been back home 24 hrs now. Maybe a little fatigue, very slight flu- like symptoms earlier today, but virtually no nausea, just an occasional “tight” feeling in her stomach now/then. Also, I saw where a couple members touted such raves about “emend”… So I was thrilled when the nurse said she’d be getting that; I didn’t have to ask for it! So…. Is this pretty much indicative of what her response will be like?Or could it still go south over the next 48 hrs? Also, do these side-effect have any relation to the white blood count, which may drop 7-10 days from now? Is there any correlation? I would assume if your nausea is minimal and you can keep up your food intake, that’s what affects thE blood count? Or is it totally unrelated? Thanks, Ceci

    #75113
    marions
    Moderator

    Thought to enclose the link to Melinda’s postings:
    http://www.cholangiocarcinoma.org/punbb/search.php?action=show_user_posts&user_id=5631

    Hugs to all you wonderful people,
    Marion

    #75112
    ladylinden
    Participant

    Hi, Thanks to all who posted what a person needs when going to chemo. Your information will make my first chemo not so worrisome. There is nothing like valuable advice! I’ve also received a lot of encouragement from the many members on this site. You have helped ease the sadness I have been carrying around. The hospital has been vague. They do not want to commit to answers because each individual is different (so they say). Turning to our members has been more helpful than anything I’ve read or been told at the hospital. Many Thanks! Patricia Avery a/k/a Linden, MI

    #75111
    ceciliarose
    Participant

    Gotcha; thanks to all. Got my note tablet today and a new warm,soft cuddly blanket and am making my list for the other chemo items. Wonderful ideas. Am really optimistic about minimum side effects after reading that this is possible. Yes, I read Tiff’s story and figure she’s the one Dr Shroff referenced. But I had misunderstood and thought she was still awaiting the transplant. It’s so incredibly awesome to hear that it’s successful at this time. Thank you all for your support. Ceci

    #75110
    willow
    Participant

    Ceci,
    You seem like a great mother and advocate. Not sure if you till need help with this: To search for a user (it has to be their username), look at the menu bar at top of page and click on “User List”… then you can search for it from there. To search for a topic, say ‘constipation’, or even for a particular Dr, drug, hospital, treatment, etc, go to the ‘search’ icon at top of page and use that. It will pull up any posts with that word in it listing them from the most recent, but you can go way back in time if you just keep going to the ‘next page’.

    All the best to your daughter and baby grandchild. Being diagnosed with cancer is simply overwhelming in the beginning, but once she starts getting treatments, things seem to settle into a routine of sorts. Like Lainey often says “fright turns to fight”.
    My sister was diagnosed 15 months ago and is on her 3rd type of chemo. Started w/ Gem-Cis but it knocked her blood cells and platelets too low so they moved on quickly to radioembolization with Yittrium-90 microspheres, which did seem to help control the tumors inside her liver, though mets appeared outside her liver. Se moved on to Xeloda chemo pills which stabilized her for 4 months or so and just this week started Taxotere. She too does not come on the site out because it can be too sad and scary at times. I find it comforting to know more about CC, to be able to ask questions, seek support and know what to expect in certain situations.
    Tiffany (search username Tiff1496) is the patient at MD Anderson Houston who the Dr may have been referring to as the person who accepted a ‘tainted’ liver in a rare but successful domino transplant. Her story is amazing and she is a young mother doing well after a long road with CC. Transplants are not common, but it is a wonderful goal that has not been ruled out permanently in your daughter’s case.
    Hang in there and God Bless you and your family. Willow

    #75109
    kris00j
    Participant

    Hi, Ceci, I posted earlier but my ipad must have not liked it because I don’t see it! Welcome to our little family. Unfortunately, it isn’t so little anymore…
    When I went through chemo I brought my iPad, phone, blanket and because part of the infusion was Benadryl, I usually ended up nodding off most of the 5 hours. I appreciated the blanket because it is usually cold in the rooms. Some institutions have warm blankets… They are WONDERFUL, but get cool too quickly!
    I drink a lot of water, and enjoyed hot tea if they had it, as it warmed up my insides. And I had easy to eat foods… as I did vomit after the third cycle, it became chicken noodle soup every time. I didn’t want to ruin my taste for anything else! I did drink ensure during my treatment, as I lost my appetite for a few days, so used Ensure as a supplement for nutrients and calories.
    Good luck, and let us know how things progress.

    #75108
    surfer1
    Participant

    Cici, my husband has started chemo (gem/cis) and has tolerated it well. His only side effect is minor fatigue and constipation. Before we started, I read what to expect and expect to bring. Lots of the suggestions for a chemo care package aren’t really needed. What we found is that the nurses are very knowledgeable and tell you what they are administering (hydration, steroids, Gemzar, cisplatain, etc.) and what each one was for and possible side effects. There is no real physical pain, except the prick when they put the iv in. It was scary and emotional but each time it gets easier to cope.

    I would bring the following:
    *a water bottle and make sure she drinks the whole time. It helps protect your kidneys
    *blanket-the ones they have are thin and don’t help much
    *food. His infusions are 5-6 hours. Keeping some food in your belly will help keep nausea at bay. We have found soup in a thermos works best. It helps with the bowel issues and it helps warm him. The room is cold and the fluids are cooler than your body temperature so drinking warm liquids helps
    *book, iPad with Netflix, magazine, etc. it’s a long process and you need something to pass the time. My parents got us a netflix subscription which has been great for him to pass the time. I bring my hand sewing projects.

    I also make sure I have a dinner in the crockpot so it is ready when we get home. Sitting all day drains you and the last thing you want to do is cook.

    Good luck and take care. We are all thinking of your daughter and family as you go through this.
    .

    #75074
    pfox2100
    Member

    Hi Ceci, I think I mentioned that I am on the same chemo cocktail. I too used IV for the first two times and then had my port placed and it has been a blessing since with no complications. My port in placed under the skin on the right side of my chest. It was a fairly quick out patient surgery and I healed nicely. I was terrified of having my port placed but my doc’s were great and I was medicated and it was over before I knew it. They even used my port for chemo the next day. My veins were pretty compromised after 2 infusions through IV and they were having to poke me multiple times to get started and that is when I decided to go forward with the port. Feel free to ask me any further questions and Alison if and when she is ready.

    #75107
    ceciliarose
    Participant

    Thank you Lorena. How is your son doing? Also, just browse around looking for Melinda? Will do.

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