Newly diagnosed

Discussion Board Forums Introductions! Newly diagnosed

Viewing 15 posts - 1 through 15 (of 17 total)
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  • #46501
    lainy
    Member

    Dear Janet, what a great post. Thank you for making others feel more comfortable about a pot and love, love your attitude. By now you know we love the shrinkage word! Looks like you are sailing along a good course. Wishing you the very best of everything and more good news to come. And you are right, don’t change your life because life is for the living!!

    #46500
    whatnow
    Member

    Hi
    Power port was the best thing I’ve had done since being diagnosed July 2016. Had it put in under “la la” drug in hospital. Doesn’t hurt to access each Chemo visit other than having to TPA (like draino for clogged port) after the week off Chemo (gem/cis). Sounds strange, but not a big deal.

    I agree with Marion–drink lots of fluids, especially water. I had mets in lungs and lymph nodes above kidney but guess they are gone as of last PET scan. Need 3 more gem/cis treatments and can get embolization. Hoping for a resection some day in the future. That they are already talking yo Kathy about resection is a good sign I think. I’m new to all of this too

    I’m going to tell Onc this week that I want to talk to radiologist and surgeon (said I would not qualify before). I’m not changing a thing about my life until It’s absolutely necessary.

    I’m sure you both will get through this and learn lots. That’s what life is all about.

    Janet

    #46502
    marions
    Moderator

    Billiy and Katherine…I too am happy to know that you went on a trip and would not hold back from doing so in the future, either by car or by plane. The response to Gem/Cis is great and it appears that side effects are at a minimum. I want to point out that flushing the system (post chemotherapy treatment) is of high importance. Drink, drink, drink fluids.
    Hugs,
    Marion

    #46504
    red
    Participant

    Billy and Katherine,

    Welcome to this site and I second the good wishes that everyone has sent to you. I also agree that the sooner, the better in having the resection. My husband was lucky enough to be eligible for the surgery last August and it is quite a good feeling “to have the beast out!”

    I also want to voice my understanding of your role as a caregiver. I know first hand what a challenging role it is. This is not a position any of us ever imagined we would be in and it is thrust upon us with no notice whatsoever.

    My thoughts and prayers will always be coming your way.
    Red

    #46503
    jpmski
    Participant

    Katherine,

    Stay on your surgeons and keep pushing them as to why not now? You got the right diagnosis, being resectable, you don’t want it squandered. Circumstanace change, doctors quit, scheduling gets f’d up, etc.

    You have to trust them but you want it out, at the first possible moment. The only benefit you have right now is that you get to be major pain in the ass and no one can say boo to you. Don’t squander that either.

    Good luck.

    Joe

    #46505
    lainy
    Member

    Billy, it sounds like you are the best RX for Kathy. I think we assumed you would be flying. I hope you both had a great time. I totally agree with you about living it up now as life is for the living. You will never look back and regret your little escapes or escapades! Please keep us in your loop as to what transpires after the next scan. Sending you both the very best!

    #46506
    vtkb
    Participant

    Thank you all for your input. We ended up going away for the weekend on a drive. Good to get our minds off things. Kathy doesnt read the website much either, I’ve pretty much read every post online., much like rwpavocat . Honestly I’m more worried that in the future she wont be well enough to go away, so I’d like to get as many trips in as possible, because otherwise i almost feel like we are wasting time if we’re just hanging out on our couch on a weekend when we are both off, although I know that’s not really true. As for the port, I think for now Kathy wants to wait and see if she can get the resection (rescan in 2 weeks) and then get the port after or during that surgery.

    Anyway, thank you all for the info, our next thread will be in the discussion section now that we’ve been introduced to the site.

    #46507
    darla
    Participant

    Ladies,

    Thanks for your input on travel. Very good advice for them and others with the same questions.
    Living life as normal as possible is so important.

    Hugs,
    Darla

    #46508
    middlesister1
    Moderator

    Kathy and Billy,
    Welcome to our group. I look forward to hearing about a successful surgery in the future for you Kathy.

    We still regret not getting Mom’s port sooner. Even now that she has been 2 years with No Evidence of Disease (NED), she keeps it for the periodic blood work and for the contrast when she has scans. One of the side effects of chemo is brittle veins. And, you can discuss with them where they are going to place it.

    Our concern for traveling by air was the risk of catching something while on the plane. It seems like we often “catch” something that manifests itself a few days after a flight, and with their immune systems compromised, it was a risk we didn’t want to take. However, wearing a mask probably could negate the risk. If ONC oks the trip, I would suggest getting a wheelchair at the airport. The airport can be a lot of walking and better to save your energy for the fun part of the trip. There may be a difference between being able to walk, and being able to walk the length of an airport on both ends and then feel well enough to do anything else. And, a perk is that you get through security that much quicker too.

    Best wishes to both of you-
    Catherine

    #46509
    rwpavocat
    Member

    Hi Katherine and Billy,
    Welcome to this great supportive group. My husband was just recently diagnosed and finds it hard to read many posts here as well so I do much of the reading and share and show him posts that are relevant to where he is at so as not to far ahead with potential negetives. As for the travel it is often me who wants to “get out of town” …its not that he would not want to but not now with the way he is feeling or with the fear of fever and having to go to hospital elsewhere etc. It has meant shorter jaunts so he can sleep in his own bed (sleep has become #1). Wishing you wellness through your chemo and a nice long weekend somewhere.

    #46510
    darla
    Participant

    Hi Katherine & Billy,

    Don’t have much to add to what has already been said and not sure about the answer to your question but hope others will be on soon to help you out. I’m thinking she should ask her current doctors their thoughts on this. Just wanted to add another warm welcome to you both. You have found the best place to be for support and information regarding this disease. There are a lot of kind & caring people here ready & willing to help and support you both in any way that we can.

    Take care and let us know how things are going. I’m hoping you will be able to take that weekend getaway soon.

    Darla

    #46512
    lainy
    Member

    Hi Billy, and welcome to you! As you have found out, Cholangiocarcinoma is NOT a household word. I have 2 thoughts on traveling. #1 Get the OK from Kathy’s ONC and #2 See if the ONC can also recommend someone in/near the place you want to go to. If he/she does not know of one then I would Google the destination for ONCs and hopefully find one who has treated CC. The key I guess is how you ended your post with, “depends how Kathy is feeling”. Best of luck and it is great to have you come on to our Board.

    #46511
    vtkb
    Participant

    I just wanted to introduce myself to the group as Kathy’s boyfriend Billy. This cancer could not have hit a more caring, lovely and whole-heartedly overall good person, which seriously sucks. In the past month I’ve read most of the posts on this website, and for that I thank all of you who have posted. Even as a physician, I must admit my knowledge of this disease was extremely low (I just knew it = bad news) as I’m pretty sure I only had about 2 minutes of medical school covering it, if that. So thank you to all who are fighting this disease and continue to post , giving those who are newly diagnosed hope.

    On a side note, are there any air travel restrictions for those who are undergoing gem/cis? I know the DVT risks but would like to travel with Katherine if possible next time we have a 3 day weekend…if shes up for it.

    #46513
    crfisher
    Member

    Welcome Katherine, I just got my port in this past week and start my chemo this coming Thursday. The port is the way to go, it saves your veins. Your in my prayers.

    #46515
    marions
    Moderator

    Katherine….I like to follow Lainy in welcoming you to our site. You are so very young to have the diagnosis of cholangiocarcinoma, but your age may also be a positive factor in this all.

    It’s not unusual for experts to disagree with the course of action, which in your case means timing of surgery. And, yes, people had successful resections and are here to talk about it.

    You may want to consider a port as so many others have done. Here is a bit of information:
    You need to scroll down: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13917

    I hope for others to come forward and to share their experience with you. Patients and caregivers are our experts, as they provide the most current information to us.

    Hugs
    Marion

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