mparsons

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Viewing 15 posts - 61 through 75 (of 92 total)
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  • in reply to: Update on Jeff’s surgery – sad news #67848
    mparsons
    Spectator

    Dear Bob and Nancy,

    Words can’t express how saddened we are to hear this news. I am so sorry they couldn’t proceed with the surgery. The setbacks and dashed hopes that come too often with this disease are hard to absorb, and I know this is a most difficult time for you. We will continue to hold you in our thoughts and prayers, and look forward to future treatment and better times ahead.

    Mark and Jeannemarie

    in reply to: What a mess #67556
    mparsons
    Spectator

    HI Anna:

    I’m very sorry to hear about this complication and hope they can clear up the cholangitis soon. If it helps, I know from personal experience that radiation can cause structure. I have been very slowly recovering from radiation induced biliary damage from radiation treatments last May and June. Apparently it’s rare, but can occur. I have had several PTC drains as a result. I am now drain free and the problem seems to be improving very slowly, which I’m told it often does, but takes time. I will hope for the same for your mom.

    Mark

    mparsons
    Spectator

    Hi Bob and Nancy:

    Jeannemarie literally shouted for joy when I read this to her. Actually, Christmas at Keck sounds pretty great! I’m so glad Dr. Selby is able to move forward with the surgery. As you know for yourselves by now, you are in good hands.

    We will be thinking of you and Jeff throughout that day, and will hold Jeff in our prayers in the days that follow.

    Mark

    in reply to: External Stent #56606
    mparsons
    Spectator

    Hi Laura:

    I had a PTC for 5 months. The site around the catheter became VERY irritated, so much so that I was sent to a dermatologist. I have not had the drain for four months, and it has taken all this time to knock the rash down with topical meds! Next time, I will definitely try the gel at the site.

    I assume that whether your drain gets removed or not depends on your bili levels and how your duct is draining. During the cholangiogram, they may push contrast into the biliary tree and watch how well it drains into the bowel.

    The first time they put in the catheter, it can be painful. However, while in place it develops a track, so subsequent replacements are fast and relatively painless. I suppose, if its removed for a while, having it replaced again later could result in some pain again. For me the pain is only during the procedure.

    I hope this helps.

    Mark

    in reply to: One step forward – two steps back. Discouraging news. #66873
    mparsons
    Spectator

    Hi Bob and Nancy:

    I continue to be amazed by Jeff’s strength and positive attitude. He sounds like such a good-hearted person. It breaks my heart to hear the news about the tumor growth. I know that this cancer responds to different chemo regimens in each persom. Dr. Sadeghi knows this cancer very well, and I’m sure he’ll make an immediate change. We will pray for its effectiveness.

    I had significant lymph node involvement, but still had a resection. We will continue to hope with you that further tests indicate that surgery is an option.

    You are in our thoughts and prayers during this time. I hope that even with this news, you were able to have a good day together and that Jeff enjoyed the holiday.

    Mark

    in reply to: Natural History Of Advance CCA In A Long Term Study. #66645
    mparsons
    Spectator

    Lainy,

    Prednisone for a year! I really hope you can get off that soon. I’m on sulfasalazine (Azulfidine). Kind of old school, but it has always worked well at keeping me in remission at fairly low dosages. I’ve heard that it sometimes works for people where Lialda hasn’t.

    Mark

    in reply to: Natural History Of Advance CCA In A Long Term Study. #66643
    mparsons
    Spectator

    Lainy,

    I’m so sorry to hear about the UC. I’ve had UC since age 16, 36 years. Not a fun little disease. It certainly taught me to let go of my pride in high school. Anyway, mine has been pretty well controlled wirh meds. I hope they find something to make you more comfortable. Of course, the surprise for me was learning last year that it’s a risk factor for CC. Who knew. All those years of conscientious screening for colon cancer, and it pops up in the bile duct. Hardly seems fair!

    I hope the new GI guy helps you.

    Mark

    mparsons
    Spectator

    Hi Bob and Nancy:

    I’ve been waiting for your report, and I’m glad to hear that you had a good experience! Like you, we will always be grateful to those on this board that prompted us to get a second opinion. It changed our life.

    Your experience with Dr. Selby was very similar to ours. We immediately felt (in a way we hadn’t before) that no matter what the outcome, Dr. Selby would ALWAYS have our best interests in mind, would do absolutely anything he could to make me feel better (no matter what protocols might say), and for that reason we could trust him. For that reason, he still coordinates my overall care.

    I am so impressed that Jeff is continuing his normal routine. He’s very strong! I hope the further testing indicates that surgery is possible. We will keep you and Jeff in our thoughts and prayers.

    Mark

    in reply to: Is surgery an option? #34970
    mparsons
    Spectator

    Hi:

    I’m truly sorry to hear about the recurrence. Did the oncologist say why surgery isn’t an option? I wholeheartedly agree with Lainy on getting a second opinion. I would get it directly from a surgeon, and one that has expertise with this disease. That might be the surgeon who did the original resection.

    All the best, and keep us posted.

    Mark

    in reply to: General Discussion – Update on Jeff – night sweats? #66133
    mparsons
    Spectator

    Hi Bob and Nancy,

    Thanks for the update. It is so good to hear from you. You have been in our thoughts and prayers. It sounds like Jeff has a wonderful disposition indeed, and it’s remarkable that he is working through all of this.

    I’m sorry I can’t help with the night sweats since that is not a side effect I personally experienced. Others may chime in on that. We will all look forward to the 9th. No second opinion is a waste of time. As Lainy said, even a confirming opinion from another expert gives you the satisfaction that you are doing all that you can and are on the right track.

    All the best, Mark and Jeannemarie

    in reply to: A Meeting With The FDA On Adding CCA To The Disease List #66053
    mparsons
    Spectator

    Thank you Percy. In a very concise statement, I think you’ve summarized the unique challenges of treating this disease. I know we all appreciate your efforts. Let me also take this opportunity to express my own appreciation for the breadth of knowledge you share on this board. When fighting this disease, information is power, and you’ve empowered a lot of people!

    Best, Mark

    in reply to: Bilirubin, Alkaline Phosphatase, Aspartate Aminotrans #65841
    mparsons
    Spectator

    Hi EDH.

    I am currently struggling to recover from liver damage caused by radiation treatment. My bili and Alk Phos are currently significantly elevated, while my AST and ALT are only mildly elevated. What I’ve learned from this is that Alk Phos is more directly related to the bile duct, while AST and ALT are more related to the hepatocytes. So my numbers are consistent with my liver cells being fine, but having damage to the bile duct (confirmed by biopsy). Alk Phos can also be elevated by structure, blockage, or even having a catheter in place.

    Obviously this is incomplete…just things I’ve learned from my own case, but I hope it helps. Hopefully soon you can get a professional opinion on your husband’s case.

    Best, Mark

    in reply to: Chemo & meds #65714
    mparsons
    Spectator

    Cathy,

    Ugh. Your side effects from Reglan soumd awful. I had no such side effects, but I took Reglan only occasionally to supplement Zofran.

    Mark.

    in reply to: Chemo & meds #65705
    mparsons
    Spectator

    Hi MaFoster:

    Hydrocodone is generic for Vicodin. I was on that after my second surgery when my pain was not as severe. For the first surgery, pain was as issue and I was given hydromorphone, generic for dilauded, and it was effective for me.

    During chemoradiation, I was on Zofran and Reglan. Zofran seemed most effective, although I was told I could alternate the two so I could take something a little more often.

    I was never on fentanyl or magistrol.

    I hope our various experiences help. Obviously everyone responds differently to these drugs, so if something isn’t working for your dad, hopefully his physicians can make a change.

    Best wishes to you and your father.

    Mark

    mparsons
    Spectator

    Hi Bob and Nancy:

    I was delighted to hear how quickly things are moving forward for Jeff. It must be a relief that he is actually receiving treatment. My dad says that my own mother did not sleep a full night for weeks after diagnosis until I finally was approved for treatment. I hope Jeff responds well.

    Ah yes, traffic in LA. I live about 85 miles east. When I was going to UCLA we would fight traffic for two hours just to get to LA, then have to proceed on to Westwood. The GPS would show just 19 miles to go to UCLA, but would estimate that it was going to take 55 minutes to get there. What!?

    I was also glad to hear that you will be getting a second surgical opinion from Dr. Selby. He is creative with this disease, so we all hope that this might provide you with additional options. At the same time, given his attention to the individual patient and expertise, if he concurs with the UCLA surgeons, I think you would have a very strong confirmation and assurance that you are taking the best path forward for Jeff.

    Thanks again for keeping us all posted. We’ll be waiting to hear more about Jeff’s progress.

    Mark (and Jeannemarie)

Viewing 15 posts - 61 through 75 (of 92 total)