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  • in reply to: Recently diagnosed with Cholangiocarcinoma #97562
    jpmski
    Participant

    Pooh,

    That’s terrific.  Congrats.

    Do whatever you have to do to have that surgery.

     

    Joe

    in reply to: Yet another new diagnosis :-( #97489
    jpmski
    Participant

    If it hasn’t spread I would focus my energy on finding a surgeon, high and low.  Regardless of what your doctors are telling you as to whether it’s operable or not.  From what I’ve seen surgery is confidence and interpretation, so you need to find that surgeon that says ‘I can get that’.

    You’re going to have to put a package together of all the medical info, files, cat scans, etc.  This is time consuming and frustrate but it’s ultra important, because when you talk to someone they are going to want this information and the quicker you are able to provide it the better.

    You never go to the doctor or hospital without getting a copy of what they did that day.  You will end up providing the same information to the same doctor’s office multiple times (you just will), and the easier you make it on yourself to do this the better.

    Make sure you get phone numbers and names of people that can help.  This battle is as much administrative red-tape fight as it is medical.

     

    Good luck,

    Joe

    jpmski
    Participant

    You got a pretty important education with the oncologist at MSK, and don’t forget it.  We all make assumptions about doctors and hospitals that don’t serve us.

    If I was you I would stay singularly focused on finding a surgery that says we can get it.  Again, we assume that if one surgeon says X every other surgeon is going to more or less agree that it’s X, plus or minus a small margin.  And it’s just not true.  I would make a big bet that if you showed the same doctor two sets of identical medical records with different names separate by one day, you won’t get the exact same take.

    I had a surgeon in Denver (someone every other doctor said “he’s amazing”) tell me that my mother’s tumor was inoperable, definitely.  To the point of being a dick and telling me I could get 2nd opinions but they’d all agree with him.  I sent the same exact information to a surgeon at USC a couple of months later and they said, “We can totally get that.  I don’t know why your doctor is telling you he can’t.”

    The head surgical nurse at USC told me something I won’t forget, she said you want your doctor to tell you they can’t do it because it means he or she can’t do it, and you can move on to someone else.  Beyond the education part of the equation, surgery is all confidence and experience.

    Do what your doctors are telling you to do now, but I would be constantly ‘shopping’ your medical records to surgeons around the country.  You just need 1 to say yes.  But you need to be exceptional organized.

    Good luck.

     

    Joe

    in reply to: Drain Placement #96607
    jpmski
    Participant

    Fay,

    I’m not 100% sure what you are talking about.  External drains?  If so, my mother had two.  If you are talking about a metal drain that they put in via an ERCP, then yes I think those are permanent.

     

    1)  As far as external drains, I’m not an expert on all of this, but I didn’t see anything to make me think the drains have to be permanent.  They are just a plastic tube inserted through the skin into the liver, I’m going to guess if you pull them out it would all grow back together.

    The good thing about them is they can help keep the bilirubin number more under control, quickly.  The bad thing is they have to be changed out at least every 6 weeks, because they do get clogged.

    2) Not really, the tube are attached to little bags that need to be drain once a day.  They’re not very big and you just pin them to your clothes.

    3) It will either be neutral or a positive for the cancer treatments, in my opinion.  If an internal stent gets clogged you may not know it until the bilirubin spike, and then it may take time to get in and have it fixed.  And if the bilirubin gets too high as a result of the clogged stent they may stop treatment until the bilirubin comes down.

    With the drains I feel you have a better chance to prevent that.  The swapping out of the drains if they get clogged is not nearly as big of a procedure as an ERCP.  Don’t get me wrong, they’re not nothing procedures, but ERCPs wrecked my mother.

    Again, all in my uneducated opinion.  Good luck.

     

    Joe

    in reply to: Jaundice #96237
    jpmski
    Participant

    My mother battled the stent thing non stop.  I couldn’t guess how many times she had them replaced.  She had ERCPs as well external drains put in.

    From my point of view based on what I saw, the stenting either works really well or it doesn’t but the middle ground where “it’s kind of working” is purgatory.  If it doesn’t seem like it’s not doing much then it’s probably not working that well.  You know if it worked well within 24 – 48 hours because they feel so much better.  They have a lot more energy and personality.

    If the stent works the bilirubin should drop quickly and stay there until it stops working.  It’s a pretty simple concept – create a bypass ‘pipe’ to get the bilirubin out of your system, and if the numbers aren’t dropping then it’s not out of your system and the ‘piping’ isn’t working ideally.

    Conversely, you know when the drains and stents are no longer working.  It’s fairly immediate because the bilirubin is flooding their system again.

    The doctors my mother had in this area I believe were top notch, at the same time I do not believe the success rate in placing stents is nearly as high as they proclaim it to be.  Again, because when it worked there was no doubt it was working.  It just didn’t happen that often.

     

    Joe

    in reply to: Please Help If You Can! #95820
    jpmski
    Participant

    Gavin,

     

    I appreciate how short you kept your survey, but it should probably have more questions.  My mother had both of these procedures but the survey only lets you select one.  I would ask a bunch of question about effectiveness, recovery time, how often did they have to be changed.

    I don’t really feel the need to rate my last experience on Mcdonalds, but I’d be willing to spend some time on this.

     

    Joe

    in reply to: Cholangiocarcinoma. My Dad #92177
    jpmski
    Participant

    Pam,

    From my experience, there’s a good chance your father will ‘pass away’ 2 to 4 days before he really passes away. What I mean is, if he becomes delirious or extremely agitated he’s not likely to come back from that, and he’ll effectively be gone. I tell you that you so you are aware that there really are two different passings.

    If he does go this way the hospice people will probably massively sedate him, or at least recommend it. This can all happen very quickly. I think a lot of it depends on where the cancer has spread to in the body.

    Sorry you have to go through this. And I don’t think it’s officially a rant until you drop an f bomb or two.

    Joe

    in reply to: Need advice #95509
    jpmski
    Participant
    in reply to: Need advice #95505
    jpmski
    Participant

    Kasia,

    You have to treat the cancer however you need to treat the cancer right now but if it was me, given that it’s in a single location, I would continuously reach out to surgeons across the county. Two opinions may seem like confirmation, but it’s not.

    Surgery is not simple 2+2=4 math where everyone agrees what the answer is. From what I’ve seen it’s a mixture of art, confidence, experience, and sometimes just some balls.

    The surgical oncology department at the Anschutz center in Denver was definitive and emphatic that my mother’s tumor was not operable, to the point of basically daring me to have someone else doublecheck their work and say otherwise. I sent the exact same information to USC in LA and they said “we can totally remove that tumor.”

    Same information, two completely different takes in opposite directions, both of which were definitive. It’s maddening, but you only have this option before it spreads, after that surgery is most likely out.

    in reply to: Hello from Houston, first post, sister with Cholangio #95242
    jpmski
    Participant

    Jonas,

    You are in a shitty, shitty position. If you feel that they’re pushing hospice on you kind of out of the blue, which is probably pretty accurate, then it’s because they don’t want to have a hard conversation with and they know hospice will. Frankly, you should not be left guessing at this point as to what is the definitive opinion of Myrna’s doctors.

    If they jumped from Step 3 to Step 10 in your opinion, then you need to corner one or all of them and tell them to give it to you straight. My experience is that they will not do that unless you make it clear that they have to.

    The flip-side of that is you might not like what you hear. You’re sister needs some good luck to find its way to her.

    in reply to: Husband has cholangiocarcinoma #94950
    jpmski
    Participant

    Diane,

    Someone needs to teach you how to vent. Here’s a question: Why is just about every doctor a coward when it comes to having a hard conversation with a patient and his or her family given that this is their chosen profession?

    Or, How are you supposed to get better inside the hospital when not one person in a position of authority says “We need to let this person rest so don’t come in every 2-3 hours, turn on the lights, make a bunch of noise, carry on a conversation that could be done in the hallway, all to ask a bunch of inane questions that have been answer 5 times today.”

    I’m sure there are better ones.

    Joe

    in reply to: Riding the roller coaster #94441
    jpmski
    Participant

    Gail,

    With respect to your husband’s decision making or behavior, one of things that took a long time for us to realize with my mother’s cancer was how badly her body was being polluted and how big an effect that had on her mind. She can cancer but she also had all the drugs too, but the worst thing was probably her body being polluted by her liver. All the liver functions backing up into her system.

    She had external drains put in to help get the bile out of her system, and these drains have to be swapped frequently because they get clogged. Every time they got clogged she’d get worse and we’d feel like the end was here, but once the drains got swapped out and the liver functions got removed from her system, she became a lot better.

    Your husband’s body is just riddled with stuff that’s not supposed to be there. And as an outsider I don’t think we can relate to what that’s like.

    Best to your family.

    in reply to: Riding the roller coaster #94424
    jpmski
    Participant

    I am sorry, Gail. I’m sorrier for your husband, having three young kids must be unimaginable torture for him.

    If it was me, I would want frequent little bouts of alone time. Not long, but be left truly alone and not hear anyone or anything, like a catnap.

    He’s probably the center of attention and hates it. “How are you feeling?” “You need anything?” “Don’t get up, I’ll get it for you.” “Are you tired?” If it’s anything like the atmosphere that was around my mother, that’s what he’s hearing over and over. I’m pretty sure I would throw everyone out of my house. They all mean well but I don’t know how helpful it is.

    Good luck. I hope it turns for the better soon.

    Joe

    in reply to: Recently diagnosed Grandmother #93955
    jpmski
    Participant

    Derik,

    Personally, I think the external drains are a good thing. They may try and place a stint across the blockage by come down from where the drains are. Long-term it’s important that they get the liver to drain through the bile duct, short-term I doubt its a big deal.

    My mother’s blockage was the toughest to get across that are IR doctor had ever come across. It took almost a year’s worth of attempts to finally get a drain to work properly, but when it did she felt much better.

    I don’t know your grandmother specific situation, but what I would tell is do not take anyone’s word as definitive when it comes to surgery. Just because one person tells you surgery is definitely not an option, doesn’t mean another surgeon won’t say it’s totally operable. I saw it firsthand.

    If the cancer hasn’t spread, you need to ‘shop’ this case around to many surgeons. From my ignorant point of view, surgery seems to be all about the confidence and experience the surgeon has. And its not like they advertise that they have a lack of either. Time is of the essence.

    Good luck.

    Joe

    in reply to: Not sure where to turn #93826
    jpmski
    Participant

    Christina,

    This is a rare and in some ways very unique cancer. What I would impress upon you is time, you can’t afford to get put on regular medical schedule, “The doctor’s first availability is six weeks…”

    That doesn’t work for you. This a very aggressive cancer and you need as much information as fast as you can get it.

    You definitely want multiple opinions on this, especially when it comes to surgery. Good luck.

    Joe

Viewing 15 posts - 1 through 15 (of 50 total)