University of Chicago Trial FOLFIRINOX.

Discussion Board Forums Introductions! University of Chicago Trial FOLFIRINOX.

Viewing 15 posts - 31 through 45 (of 63 total)
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  • #75106
    notdoneyet
    Participant

    Good Morning Ceci, My 30 year old son was diagnosed June 13, 2012 and he also never joined this site. But as his Mom and the family researcher I was on it day and night looking for help and answers, which I received in abundance! I can honestly say I learned more about CC and found different avenues to research here then anywhere. Knowledge alleviates some of the fear. Then when the Oncs recommend something you understand what they are talking about and are able to ask intelligent questions. This helped my son enormously as he didn’t have to “fight alone”, I brought him all the information and then he would decide. The wonderful people on this site taught me how to help alleviate the small annoying side effects that come along. Hiccups, constipation, etc… I highly recommend you spend a lot of time learning to navigate through the older posts and all the sections. The information here should be printed in gold ink! Best of luck to your daughter, you and your entire family! Fight hard! You may wish to Find the link to Melinda’s posts, she’s in a really great clinical trial that has a lot of promise , I believe. She will fill you in if you email her directly! Lorina

    #75105
    ceciliarose
    Participant

    Ohhh… Y’all are something else! Thank you Marion, jScott, Lainy, kvolland, pfox, and thebompie4…. I am taking notes on all the advice and hope we get the chance to utilize these ideas as Alison begins her chemo. I am also taking notes on your stories so I can try to envision you as individuals and not just a big clump of advocates! I figure I can handle a small group of new friends, but, gulp!, there are tons others on the site too! But each of you has already offered precious nuggets of info… I am so appreciative. Forgot to mention that Alison set up a Caringbridge page, if you are familiar with that. She is listed as Alison Neustrom. Y’all have a great day. We’ll be doing the Saints! Who-dat! So…. Lainy, you think I need to try and go on the Introduction page? I’m not sure if I know how to “copy”. I’m on an iPad; maybe I need to get on the computer for that.

    #75104
    kvolland
    Participant

    Oh Lainy – can I come to your house please? Mine is so crazy right now with the husband, the daughter and the grandson, not to say they aren’t the loves of my life but quiet?! not really sure what that is anymore. And my dinner was a bowl of ice cream….sshh don’t tell anyone.

    KrisV

    #75103
    lainy
    Participant

    Hey you. BBQ Ribs tonight and I sent you some, Fed EX! Can’t miss our Sat night date especially as we didn’t do anything Fri night! LOL
    Ceci will see quickly that we do use a lot of humor around here, best medicine is to laugh. And she sounds like one of us cwazy people. Glad things are quiet at your house! My house is always quiet! Just me and a desert scorpion now and then. I wouldn’t mind a Scorpio (T was a Scorpio) now and then either!

    #75102
    kvolland
    Participant

    Well Ceci and Lainy,
    I guess this is my Saturday night date too. My fault too. First Saturday I have had to work in two years and I am too tired to go out. My husband wanted to but I didn’t.
    The port is the one that is planted under the skin. As a nurse I like it better because when you are not using it then it is just under the skin and doesn’t interfere with anything. You can shower like normal and it’s just there. However it is under the skin and requires a small poke to access it. If the poke is painful then they can numb the skin first. Placing it is a simple outpatient procedure for most people. The biggest risk factor (with it and most anything that is implanted) is an increased risk of infection. That is why my husband’s is out.
    I believe that our tiff1496 had a transplant and here is a link to her story. It is very inspiring to read.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10780

    Keep us posted and I think I may be a little addicted to being here. It does help me get through what we (my husband and I) are going through and focus less on us and more on others. He refuses to even look at the site right now although he does listen to my stories.

    KrisV

    And Lainy I hoped that you were feeling soooo much better with all this. I keep my fingers crossed for you and keep you in my prayers.

    #75101
    jscott
    Member

    Hi Ceci:

    Lots of great information already. My wife, Andrea, is in the middle of her 10th cycle of gem/cis. The one thing I would add is that the doctors added a small bag of “emend” to the chemo process after the first treatment. I believe emend is an anti-nausea drug, but whatever it is, Andrea swears by it. It made a huge difference in how she felt after chemo. I have heard this from other people as well. So much really that I am surprised it is not a standard part of treatment.

    I hope things go well,

    Jason

    #75100
    lainy
    Participant

    Hi CeCi, is this our Saturday night date??? Yes I was asked to be a Moderator after the powers that be saw I was going to stick around after Teddy passed.
    Most people have had enough when the Journey ends or succeeds greatly. Can’t blame them this is not easy because each member that joins becomes family. I joined at the time of inception, was just lucky to find it on the Internet. I felt compelled to pay it forward after being helped for over 5 years. I could never have been as strong or wise if you will without the team I had helping me. I think at times I am actually addicted! Truth be told I get so much more out of it than I put in. Ceci, always take a pad and pen to the ONC or even a tape recorder and always have questions written down so you don’t forget to ask. I know we always think of things later! I have been trying to get in to remission from Ulcerative Colitis for 2 years now. They recently put me on Remicade which is much like chemo through an IV. So I wrote down side effects I was getting and came up with 16 of them on and off every day. I was so pleased that the nurse read each one and told me if it was an allergic reaction or a side effect, I am wondering if this would help with chemo. Even though it changed nothing I went home feeling more peaceful knowing it was all normal for what I am having done. Just say’in. Anyway when you get in to all this with the chemo remember to be kind to yourself, I think we all forget to do that. Oh and listen to your gut, it is usually right on. I feel I graduated from GUT 101. You just keep writing what ever is on your mind as it always feels better after you pound the keyboard!

    #75099
    ceciliarose
    Participant

    Lainey, huge thanks for your support. Tell me about this moderator status? Is it because of your length of time, or the quality of your encouragement??? Either way, you are a comfort. Thanks. It is scarey; does not seem real; so much to learn. So many things you forget to ask the doctor. I appreciate that this is a place to obtain some answers, albeit layman, but obviously trustworthy.

    #75098
    marions
    Moderator

    Ceci….I too would like to welcome you to our site. As expected you have already received tons of wonderful information. I just want to add that hydration should not stop with administration of chemotherapy rather, consuming plenty of liquids throughout the entire treatment will help flush the kidneys of the drugs.
    Good luck and please stay in touch.
    Hugs,
    Marion

    #75097
    lainy
    Participant

    Ceci You are fantastic! You have really taken to this like a super star while I know your heart is breaking. But again we have had things turn around for members in Alison’s position. Knowledge is the most powerful weapon we have against CC as it is truly a crazy monster. I was on here for 5 years with my husband’s journey and he Never came on. Some people prefer not to but ALL our members are the bravest, most caring people the world over as you have already seen. I don’t see anything wrong with thinking of a goal such as a transplant as long as you stay realistically optimistic. Sending good vibes and lots of juju for Alison to sail right through her chemo, please keep us posted.

    #75096
    ceciliarose
    Participant

    Oh, I forgot to mention. Alison will use Dr Shroff’s gem/cis prescription for the chemo, but the dr in Baton a rouge will administer it. When and if her symptoms become unmanageable, she can transfer to an oncologist here is Lafayette where we can be of more help, still using the MDAnderson prescription.

    #75095
    ceciliarose
    Participant

    Oh gosh, you all are wonderful to all share so much! Alison will be using an IV for her first few chemo treatments, and maybe moving to the port later. Is the port all the way inside, with skin covering it, or is it the dangling type? Which do you recommend when the time comes? Alison was first diagnosed in Baton Rouge under the care of oncology Dr Castine. We then got over to MDAnderson with Dr Rachna Shroff. They both indicated pretty much the same. (Shroff did give us a sheet with nausea meds to get ordered, but I was looking for confirmation from the warriors themselves! Now have it!) all the tests (CT, bone scan, colonoscopy and endoscopy indicated no spreading. Metastasis appears only in the liver, but apparently in several tumors, such that they both indicated surgery was not an option. Dr Shroff indicated that Alison would not be able to get off chemo…. She left the door slightly ajar that if Alison’s chemo went well with no new growth.. And maintained stabilization for 6-10 months, then “possibly” she may be able to get her name on a transplant list. Shroff referenced another young woman over there (younger than Alison’s 42) who has been doing well, as described, and has gotten her name on the transplant list, however, she was willing to accept a “tainted” liver – I assume to get her name higher on the list. Shroff told us not to be thinking transplant, but to focus on the chemo for now. We are going to explore on our own- and I’ve already learned so much from this sight. Alison indicated she didn’t think she was ready to start this kind of discussion; it may get her down. So for now, you guys get only me!! Merci beaucoup!’

    #75094
    pfox2100
    Member

    Hi Ceci, sorry you had to find us but you will find this site so welcoming and wonderful. I am young like your daughter 34, and she is more than welcome to message me too if she has any questions. I am almost on my 6th cycle and tolerating it well. I agree the first time was the scariest as mentioned before because it was all so un known and didn’t know what to expect. I was also terrified to get my port placed but am so happy that i have it in now and it has been a blessing with no complications. As far as chemo I do try and stay hydrated as much as possible. They administer me zofran and steroids at the time of chemo as well as steroids for the following 3 days at home. I also have anti nausea meds. Many of these common side effects can me managed with medication. I have tolerated the side effects well and I struggle mostly with the emotional aspect to the whole experience with anxiety and depression but am also managing that well with medication also. Good luck on yall’s journey I wish you luck.
    Porter

    #75093
    kvolland
    Participant

    Ceci –
    Welcome to the best family no one really wants to be a part of and so sorry you had to join us. My husband was diagnosed in May with CC. We are now halfway through his chemo….doing the midway scan next Friday. So far chemo has not been a problem for us.
    Some of the prep for the chemo depends on whether your daughter has a port or not. If the has a port for chemo then I wouldn’t worry too much about the getting things started. If she does not have a port and they are going to have to start an IV I would suggest making sure she is well hydrated prior to chemo and no caffeine prior to getting the IV started. We had a lot of trouble after my husband had his port pulled with getting an IV started so that is our routine.
    Also they should give her nausea medications to take after the chemo. My husband has Zofran (ondansetron), Dexamethasone and Prochlorperazine along with Lorazepam. He was given instructions to take the Zofran and Dexamethasone twice daily for two days and the others as needed although they recommend that he take the prochlorperazine every 6 hours which he does. No nausea with this plus they give him plenty of stuff prior to chemo.
    Good luck and keep us posted.
    KrisV

    #75092
    thebompie4
    Member

    Ceci

    Hydration is important….but they do a mighty fine job of pumping you full
    of hydration WITH the chemo. It is all administered at the same time…
    bags and bags of fluid and fluid for steroids and fluid for chemo and fluid
    for flushing kidneys…etc.

    My husband has been on Gem/Cis for 8 months straight and pretty
    much FLOATS out of chemo with lots of potty stops all day long, on
    the way home and all night.

    The first round seems to be the worst mentally, at least it was for
    us –since it is SUCH an “unknown”. After a round or two, we felt
    like old pro’s and the hospitals/nurses/drs have this system down
    to a science.

    best wishes…it’s a scary and hard place to be.
    hoping your daughter sees really great results from this cocktail!
    Dorien (and Kyle) Nielson–Kyle, my husband is the guy with the cancer

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