Have CC & want to connect with others.

Discussion Board Forums Introductions! Have CC & want to connect with others.

Viewing 15 posts - 1 through 15 (of 19 total)
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  • #36349
    bw
    Participant

    Sharpeilover, The reason I have a plastic (temporary) stent is because I am still going to have the PDT work done. The stent must come out for this procedure and be replaced. If it weren’t for that I would most likely have a permanent metal mesh stent. Until this week those were the only 2 I had known about but now kathyb has a new development it sounds like and I am very interested in a temporary metal mesh stent, wrapped in plastic. Gavin has posted an excellent site on stents and how they are used. I hope I’ve helped answer your question. I also think your mother is doing the right thing and am happy she’s doing so well. Let her know we all tire very easlily at times, it goes with the territory. But its a good time to thank God for another day and all we have. Wish you, your mother and all the rest of the cancer patients and their caregiver the very best. Bill

    #36348
    kathyb
    Member

    There are permanent stents. I only agreed to the metal stent wrapped in plastic because it wasn’t permanent, suppose to have twice the life before replacement (6 months) and had previously heard there are “problems with permanent stents”.

    I am a novice at all this and do not claim to have much knowledge. I’m sure every kind of stent can have problems. It seems the doctors don’t know as many answers as we would like them to, since we are such a minority.

    #36347
    sharpeilover
    Member

    Bill, Welcome to this site. It is filled with compassion and information! Your story is very intersting and inspiring. So thank you for taking the time and effort to share it with us.
    I, too, am asking about your stent situation- you have had to change it many times. My mother had a “temporary” plastic one put in when she was first diagnosed in early Nov 2009. It needed to be changed about 6 weeks later- your description of symptoms of blockage were similar to my mother’s.
    They changed it to a metal mesh “permanent” stent. I am not sure I have it right now, that it is “permanent.”
    I was curious whether you have more permanent options available to you.
    My mother’s stent is saving her life, at this point. Without it, her local organ functions would have failed and/or she would have had a huge infection.
    Surgery and other local treatments are unavailable to her as her cancer metastasized to her skeleton (nowhere else, though…)
    Maybe you or others can talk about the different types of stents out there, and whether there are any that are “permanent.”

    God bless you and your loved ones. May you beat this devil. You are really doing so well!!!!!
    Thank you!
    p.s. My mother did decide to do chemo. Her QOL so far, even on the toxic option with cisplatin, is very good. We feel terribly grateful that she is feeling quite well (just tires very easily) during what may be the final weeks, month, year of her life, if the doctors are correct. We are still waiting to learn if the chemo is attacking the tumors…

    #36346
    kathyb
    Member

    Gavin,

    I honestly do not know. I looked at the Mayo report to my local doctor. It says, ” A covered expandable metal stent”. “A Viabil 8-mm internal diameter x 4cm long fully covered stent.”

    Kathy

    #36345
    gavin
    Moderator

    Hi Kathy,

    Is this the stent that you were talking about?

    http://en.wikipedia.org/wiki/Self-expandable_metallic_stent

    Best wishes,

    Gavin

    #36344
    kathyb
    Member

    Hi Bill,

    I read my post and I was partially wrong about the stent type. I make so many mistakes these days. Sorry. It was a self-expandable metallic stent wrapped in plastic (not the other way around). The wrapped in plastic part part is what makes it removable, I think. I was told it should last six months instead of the 3 months for the plastic stents, and it is suppose to be removable. The Mayo Clinic in Rochester did the procedure. I tried to find something about it on their web site, but couldn’t. It may be rather new.
    Hope this helps.

    Kathy

    #36343
    gavin
    Moderator

    Hi Bill,

    Thanks for your update and for sharing your story with us all. My dad also had the PDT but just the one time, also with no chemo. His stent was metal but not wrapped in plastic so I would be interested in hearing more about that type of stent.

    Glad to hear that you are having a better quaility of live and I hope that continues for a long time indeed.

    Best wishes to you and Jenny,

    Gavin

    #36342
    lalupes
    Participant

    Thank you for answering my question so clearly, Bill. I’m very glad you have a better quality of life – long, long may you continue to do so.

    “Listen to you body, it’s talking to you” is a wonderful expression!! :D

    Take care & hope to “talk” to you soon.

    Julia

    #36341
    bw
    Participant

    Thank you everyone for such a nice welcome, Its great that there is such and openness for discussion at this sight. I do take my time getting my thoughts on paper please bear with me. There are a couple of things I’d like to share that Kathy and Lalupes have asked me. Why I’m not doing chemo. It was presented as a way to buy time, a few months or so, nobody
    knew. They did know it was’t a cure. Just as the PDT is not a cure.
    We believe the body can not heal itself if its defenses are being killed off by chemo. Diet being the change we made to strengthen the immune system and cleanse the whole body of toxins and chemicals making it easier to fight the cancer. Another reason is my first wife and brother inlaw both died of cancer and both went through chemo therapy. Their quality of life was poor and I want a better quaitly of life and have one.
    As for a partially blocked stent, it usually shows me its getting blocked in 3-4 ways before I have the billirubin checked. 1) urine turns darker, 2) stool turns lighter, 3) my right side just above the liver aches off and on and
    4) I usually get an infection which is a tightness across my abdominal area.
    Sometimes its just the infection symtom and they pull the stent and its full.
    When its just and infection symtom I start taking cypro and have kept things from getting worse for up to 5 weeks. Everytime is different and there is no order to the symtoms. Just listen to your body, its talking to you.
    I hope I answered your questions for you.
    I have a question for Kathy. Can you give me any more information on the stent you spoke of ‘metal wrapped in plastic’ that lasts up to 6 months?
    I sure would like to see if that would work for me.
    Its been 16 months and the tumor has had very little growth and this weekend was my first fever since last October. I think we are making progress however slow. Thank you all for your support and sharing its been
    great to see so many interested people. Who knows where this site could lead, maybe to a cure. Love you all, Bill

    #36340
    lalupes
    Participant

    Welcome, welcome, Bill & Jenny. Please keep talking to us – I certainly didn’t get tired reading your post. Like Kathy, I’d like to know why you’ve said no to chemo if it was recommended as being suitable; my sister’s on the Gem/Cis combination & it seems to be keeping tumour progression at bay.

    My very best wishes & good luck with your stents.
    Julia

    #36339
    marions
    Moderator

    Bill….I would also like to welcome you to our great club; the one no one wants to belong to but, are so happy to have found. I enjoyed your detailed report and wanted to pass on to you that we are never tired of reading the comments shared. Please, continue on. Also, good luck with the upcoming stent exchange.
    Best wishes,
    Marion

    #36338
    kathyb
    Member

    Bill,
    If you don’t mind sharing, what are your reasons for not doing chemo? Also, how do you know for sure when your stent is partially blocked – total billirubin count? My stents have always been changed before they get blocked.
    Thanks,
    Kathy

    #36337
    kathyb
    Member

    Bill,

    Thank you for sharing your journey.

    I was diagnosed in July 09 at almost 60, have an inoperable tumor too large for liver transplant or PDT, have had radiation and chemo which stabilized growth so far, 4 stent placements (the last one was plastic wrapped in metal which should last 6 months), 2 bacterial blood infections, considering going on chemo again even though I’m feeling great, have a strong faith in God, and feel very blessed to be able to go to the Mayo Clinic.

    By the way, I love my liver. It’s been good to me, too! Half of it has been destroyed by the tumor, but it seems livers have a way of rejuvenating and carrying on. It seems like a miracle of creation to me.

    Hoping to hear more from you and how you are doing.

    Kathy

    #36336
    devoncat
    Participant

    Welcome Bill. You have found the right place to connect. We are like one big family. We all give our opinions freely and loudly :), are comfortable with each other to disagree and have the biggest shoulders collectively to help carry the weight. There is more experience on this board than most doctors have so we are the biggest fountain of information you can have.

    Hang in there and we will do our best.,

    Kris

    #36335
    jeffgrieder
    Member

    Hello Bill and Jenny. You have come to the right place to connect with others about CC. I have only been here less than a month and I feel like I have known several of the others here for years. My life partner of over 10 years, Marc, was diagnosed last month with CC and is already going through chemo and you may have read our story on other threads. Even though we are still in great shock in this short period of time, we have great comfort in knowing that there is such great support through the CC Foundation.

    Welcome to the Family!

Viewing 15 posts - 1 through 15 (of 19 total)
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