Discussion Board Forums Introductions! Feeling clueless…

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  • #46710
    mlepp0416
    Member

    Dear Lots:

    My husband has had an external drain tube into his liver for the past year. His bilirubin level was 24,000 (24) when the drain was first inserted. It has been holding at aroung 7,000 (7) for the past three months. Below 3,000 (3) is considered normal.

    When they first inserted the drain tube they told him it would take 2 – 3 weeks for his bilirubin level to taper off. Your mom’s urine is probably a lot darker than normal as well because the kidney’s try to flush the excess bile out of the body as well. If the bile duct is plugged, the bile backs up into the system and the kidneys flush the excess (as much as possible) out of the body.

    One of the things that we have to do on a daily basis for my husband Tom is to flush the drain tube each day, that keeps the holes open, then I clean the wound and rebandage it. His IR (Interventional Radiologist) also adds extra holes to the tube before it is inserted into the liver. And we get the tube exchanged every 4 weeks to help prevent infections. We were having the exchanges done about every 8 – 10 weeks, then every 6 – 8 weeks, but after three serious infections we are now on a 4 week schedule.

    Feel free to ask any questions about the external bile drain as I have tons of experience with this issue. After Tom’s resection he had a JP drain (in fact, he had two of them) for 7 1/2 months because after the surgery he developed a bile leak from the cut side of the liver. He has had the current drain since December of ’09.

    Hugs to your Mom!

    Go with God and KEEP KICKIN’ THAT cancer!

    Margaret

    #46709
    lainy
    Member

    Yes, her bilirubin should go down further or they would have never set up the chemo if they thought it wouldn’t. The initial surge is becasue so much was blocked so now it probably will drop just a little slower. A lot can change in just a few days. She sure has to be feeling better with a drop like that, yes? Good luck on the rest of the “drop”. Wishing you and Mom the best.

    #46708

    Hello All,
    My step mother’s first chemo was scheduled for this afternoon. I had planned on attending with her as I have been anxious to meet her oncologist and hopefully get some questions answered. It was cancelled :( Her bilirubin was too high. They want it to be below at least 80 and she is at 144. She was 432 before the stent was put in at the top of her liver ( drains into a bag from her side , not sure of proper terminololgy ) and once that procedure was done, her bilirubin went down to 200 within a day or 2. That procedure was about 11 days ago . Here is my question … what are the chances that it will continue to go down ? I guess I’m wondering if she will ever get chemo. Has anybody ever had experience with it going down that slow and then actually getting to where it should be ? Thanks

    #46707
    lainy
    Member

    Oh, my goodness, Tommy, you are too kind. News flash….I was born and raised in Kansas City Mo…almost were neighbors. Tommy, with Judy’s attitude and your love, you will both make some wonderful memories to have forever. When Teddy was told in June that there was no more they could do for him, except keep him comfortable I decided to listen to my angel (she knows who she is) and set out on a journey to make the time we had, our Precious Memories. Therefore, when it was all over, I would look back and instead of seeing the monster that lurked, I would see only Precious Times. I would not change anything at all. I listened to my gut when it came to decisions and our time spent was done not in cyrying but like Teddy said, on a Honeymoon! At least that’s what he told Hospice. And, yes, the good days far outweigh the bad.
    Wishing you both the very best.

    #46706
    tommy
    Member

    Dear Lotsofquestions, my wife was diagnosed with cc, tumor in the bile duct, in April 2009. Our first visit with the oncologist he gave her weeks to a few months without treatment and maybe 18 months with treatment. She did 30 rounds of radiation and then, if I remember right, 31 rounds of chemotherapy. She started with Gemzar and Cisplatin and as time went by they took out the Cisplatin as it was just to hard on her. She also went through 5 different stints, then Dr. put in a permanent stint. We now have Hospice visiting weekly and in terms of living, Judy is still doing lots of things on her own. Her pain management seems to be my main concern and they are doing a good job with that. I don’t think Salina Ks. is as well known for their cancer center as they should be. I guess I’m just saying we never really knew what to expect but her Oncologist kept us pretty well informed of how things were progressing. When it comes to advice, information or just plain whining, this is the place to be. If it weren’t for dear sweet Lainy and Marions, I’m pretty sure I would have gone bonkers. All the advice you have seen on here so far is advice these same wonderful folks gave me in the beginning. Hold on tight and pray because it is a roller coaster ride. Believe it or not, we have had a lot more good days than bad ones. Wishing you the best. Tommy

    #46705
    brad4900
    Member

    Dear Lots,

    I was diagnosed with cc in early July 2010, I had 2nd, 3rd, and 4th opinions. The one important thing I would suggest is a journal or notebook to write down the doctors suggestions and also questions that come up. The entire situation, including treatment can cause us (patients) and our families to be overwhelmed and sometimes forgetful.

    Also, I have been in the doctors office with my wife and the two of us heard two different things. It is important to have at least two people in the room and then to compare your understanding of what is said.

    Best Wishes,
    Brad

    #46704
    mlepp0416
    Member

    Dear Lots:

    When I was unable to go to the visits with my hubby to his oncologist and Radiation doctor, we went to Radio Shack and bouight a digital recorder (about $40) and I was able to listen to everything that was said during those visits. It allowed me to hear first hand what was said and I was able to then write down any questions I had for his next visit.

    Best $40 we even invested!

    Go with God and KEEP KICKIN’ THAT cancer!

    Margaret

    #46703

    Those are all excellent suggestions. Gavin, I especially like the idea of recording the conversations. I find so much is based on interpretation. Three or four of us sometimes listen to the doctor at the same time, and we often take away 3 or 4 different things. I am going with her on Thursday for her first chemo so I will be able to discuss things with her oncologist. As of right now, we don’t even know what stage her cancer is at. Thanks so much for all the help….

    #46702
    gavin
    Moderator

    Hi Lots,

    I know that having to take in all of this new information in meetings with docs and oncs is so hard to do, especially so just after your loved one has been diagnosed during which is a stressful time for you all. And at the same time also trying to have questions ready to ask just after you have been given news etc.

    Everything that everybody has said to you regarding taking notes, preparing questions and speaking if you can on your own with the onc is excellent advice. Buit if I can chime in with something else that may be of use is seeing if you can record the meetings with the doctors and that way you will know exactly what has been discussed. Do you think that this is something that would be possible?

    Best wishes,

    Gavin

    #46701
    jathy1125
    Participant

    Hello, and like everyone so sorry you had to find this wonderful group of people. Also like everyone else says, you need a second opinion. I am one of the few survivors of cc. I also had an inoperable tumor in my bile duct. I was very lucky that by a miracle I had my first ERCP (stents) done by a knowledgeable doctor. I was placed in Dr. William Chapmans care with in 24 hours of diagnosis. He is a world renown doctor at Barnes-Jewish Hospital at St. Loius, MO. I qualified for a clinical trial (Mayo and Barnes the leaders in this trial) which involved chemo, radiation and a liver transplant. I ended up having 2 transplants. I am alive today because of them. You can read my story at thetelegraph.com just type in christmas miracle. Don’t give up and get opinions until you know you have right one. Thanks to Dr. Chapman I got to skip that step! Good luck and lots of prayers- Cathy

    #46700
    andie
    Member

    Dear Lots,

    Your step-moms tumor is in the same place as my Dad. He turned jaundice last February and was diagnosed in April with CC. He too has had no treatment as his bilirubin level has never been low enough for chemo BUT he is still with us. I know it’s hard but take each day at a time, some days will be bad but they only make the good days better.

    I’d also advise getting second opinions, we got 2 more opinions and whilst they were both the same outcome atleast we know we have tried.

    Luckily Dad is only jaundiced, no pain, still eating although a little more tired and thinner. He takes fortijuice drinks to help with nutriants lost, he also drinks alot which is important.

    sending lots of best wishes your way

    Andrea

    #46699
    marions
    Moderator

    Lots….I agree with Nancy. Most physicians will speak with you as long as the patient gives permission to do so. We have seen, on this board frequently for children to speak to the treating physician however, it can be a delicate request. For numerous reasons often times parents appear to be reluctant to have family members speak to the doctor. Hopefully, this is not the case with your Mom and Dad. Also, the information given can easily be overwhelming therefore, it helps to prepare a few questions beforehand and to have a notepad handy.
    Good luck and all my best wishes,
    Marion

    #46698
    nur1954
    Member

    Dear Lots – Another thing you might want to consider. Ask your Dad if he would agree to have the oncologist call you to explain what is going on after visits. With permission, I think he could and would do this, especially if your Dad is having a hard time digesting everything. Perhaps you could call the oncologist first and ask him to get the o.k. from your Dad and Stepmom. It can’t hurt to try……

    #46697

    Thank you all so much for your answers. You are all correct. Nobody knows what lies ahead of us ( and thank God sometimes that we don’t ) It is just as you all said , it is hard to be on a roller coaster all of the time. I don’t live in the same city as her and I find my father only catches half of what the doctors tell him. As you all know , it so hard to hear good news in the morning ( she is sitting up eating her breakfast ) and in the evening your emotions crash when somebody calls to describe how bad her pain is. Then I wonder what is causing her pain … is it the cancer already or the procedures she has had the past 2 wks. So frustrating ! Her oncologist is sending her to another surgeon for a second opinion but has alway scheduled palliative chemo treatments to start on the 20th of Jan. Everything has happened so quickly and it is sooo overwhelming . I truly do appreciate having a place to ask questions and vent. Thanks :)

    #46696
    gavin
    Moderator

    Hi Lots,

    Welcome to the site. Sorry that you had to join us all and I’m sorry to hear about your step mum, but I am glad that you have joined us all as you will get a ton of support from us all. I know what you mean when you talk about feeling clueless, I felt the same when my dad was diagnosed. He was diagnosed back in 2008 with inoperable CC, tumour too clsoe to the portal artery and when we got the news, it hit us all big time.

    You are doing the right thing for your stepmum in seeking information and the better informed you are the better you will be in making decisions. lainy is so right when she talks about seeking another opinion for your stepmum should she choose to have one. We all know that it is hard not to think ahead and worry about what may lie ahead. But none of us know for any certainty what may or may not lie ahead. Please try and focus on the now and not think too far ahead as right now your stepmum will need you to be strong for her. You ask about a time and to be honest, no one here can answer that for you.

    I know that all of this is tough to deal with and right now your head is probably bobbing all over the place with everything and all of this stuff that you have never heard of before. But we are all here for you. We have been through this and know how you are feeling right now, so please, keep coming back here and keep us updated on everything. We know and we care.

    My best wishes to you and your stepmum,

    Gavin

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