mparsons

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  • in reply to: Update on Jeff – Info on Xeloda, possible 2nd opinion #65386
    mparsons
    Spectator

    Thanks for the note Marion. My wife, Jeannemarie, is wonderful of course…the woman that single handed got me from palliative care at UCLA to surgery at USC via a referral from the University of Pittsburgh. Now that’s advocacy!

    Best, Mark and Jeannemarie

    in reply to: Update on Jeff – Info on Xeloda, possible 2nd opinion #65383
    mparsons
    Spectator

    Hi Bob and Nancy:

    As Marion mentions, Gemzar is commonly used in combination with Xeloda for this cancer, so this may be what Dr. Sadheghi plans for Jeff. I have done quite well on this therapy with only very minor side effects.

    I am very glad to hear that UCLA is still considering surgery in the future. That seems like a good sign. For a second opinion, I can personally affirm Marion’s recommendation. USC would be the other major medical center in the LA area that has great experience and expertise with this cancer. After I was put on palliative care, I went to USC for a second opinion. Dr. Rick Selby performed two extensive surgeries, and then referred me to Dr. Lenz for adjuvant therapy (since I had metastatic disease). I am currently tumor free. In short, with this complicated cancer, every case is unique and I think a second opinion is always a good idea.

    It sounds like you are doing the very best things for Jeff, and I wish you all the best as you go through this challenging time.

    Mark

    in reply to: First post #65325
    mparsons
    Spectator

    Hi Alla:

    I’m glad you got at least this partial diagnosis. A bowel obstruction is one of the most painful things one can experience. The NG tubes are not fun, but it should quickly help reduce his symptoms as he decompresses. Hopefully that will make his pain much more manageable.

    Mark

    in reply to: ANGRY,CONFUSED AND VERY SAD!!! #65057
    mparsons
    Spectator

    Dear greynosa:

    I am so very sorry to hear of your girlfriend’s diagnosis. I am glad you have found your way to this site. For both myself as someone fighting this cancer, and my wife as my partner and caretaker, the folk on this board have been a wonderful source of encouragement and support. More than that, advice that we received here about second (and third) opinions changed our lives for the better!

    In that vein, along with Marion and Lainy I want to encourage you to look into USC. I know Dr. Singh used to be at USC, and he may be a good source for a second surgical opinion. However, I’d look to USC, not only for another opinion, but as a possible place your girlfriend might want to end up receiving ongoing treatment. In all the areas of surgery, oncology, interventional radiology, and so forth, they have multiple physicians who know this disease and treat it everyday. They have a reputation for being creative and up-to-date on the latest research and treatments. We have received excellent care there.

    You both will be in our thoughts and prayers as you move through this difficult time. Do remember, though, there is hope. I am a living testimonial to the fact that you can have good quality of life after this diagnosis, even in my case of having late stage disease.

    Mark

    in reply to: Surgery tomorrow #63983
    mparsons
    Spectator

    I am very sorry that they could not proceed with the surgery. This is heartbreaking news, made all the more difficult by the fact that there is just no warning of this outcome in advance of the surgery. All of us fighting this cancer have had setbacks that at the time can seem insurmountable. Key to moving forward seems to be allowing ourselves to express our initial feelings of anger and frustration. In the end, though, we each seem to find renewed strength and determination to continue the fight. We will all continue to lift you up with our thoughts and prayers, and I know you will find that strength too.

    Mark

    in reply to: New here #63862
    mparsons
    Spectator

    Hi again Joanna:

    Don’t worry about the long posts. This is a great place to share your experiences, and it helps those of us reading as well.

    Yes, we do it for our loved ones. I am 52 with three stepsons in the house. My initial sadness was that I might no longer have the privilege and joy of loving and supporting my family. Quickly, that became my motivation to fight.

    Regarding the surgery, yes you will have a big new zipper. The size will depend somewhat on what they will be doing. It may go from just below your sternum and follow the the curve of the right side your rib cage around to your side. It may also travel a bit along the bottom of your left rib cage, but just a bit, making a sort of lopsided chevron pattern.

    Your recovery will depend on the length and complexity of the surgery. My first one was very complicated and took 12 hours. Recovery from that took a considerable amount of time. I spent 3 days in ICU, 8 days total in the hospital, and about a month recovering at home (taking short walks and so forth). The second was about 6 hours. I spent only 18 hours in ICU, about 6 days total in the hospital, and was up and about and back to my routine MUCH more quickly.

    Even with the challenges, this is indeed something to look forward to! Surgery provides the best opportunity for a good outcome. I remember waking up in ICU after the first surgery, and when my eyes could finally focus I looked up at the clock. It said 12:00….but was it noon or midnight? If it was noon, it meant they couldn’t complete the surgery. If it was midnight, it meant they did what they had hoped. I couldn’t really move or look around, but after a few minutes from behind me I heard a nurse say, “We’ll be with you all night.” I was overjoyed!

    Best, Mark

    in reply to: Can cirrhosis of the liver be caused by radiation? #63847
    mparsons
    Spectator

    Oh, and I probably should have mentioned that RILD is very rare. I am being treated at a major cancer center with expertise in cc, and it’s obvious they have not seen this occur much if at all. That’s by way of saying, I don’t think our doctors are keeping something from us, I think it’s just not an expected outcome.

    Mark

    in reply to: Can cirrhosis of the liver be caused by radiation? #63846
    mparsons
    Spectator

    Hi Mona:

    There is such a thing as RILD, Radiation Induced Liver Disease, which used to be referred to as Radiation Induced Cirrhosis. I think the older terminology was too limiting. Anyway, I don’t have definitive information on this since I’m just a patient In the midst of researching it in my own case. I started treatment non-cirrhotic. I’ve had two resections and my liver was doing perfectly. After radiation … brachytherapy and external beam…my liver numbers have been elevating, and I am mildly jaundiced. I am currently cancer free. My doctors vary in their opinion as to whether this is RILD. Such cases usually resolve themselves, so we’re sort of waiting it out, but a small minority of such cases do lead to advanced stage liver disease and death.

    So, this might be what your mother’s physicians were referring to.

    Best, Mark

    in reply to: New here #63857
    mparsons
    Spectator

    Hi Joanna,

    Welcome, and thank you for this uplifting post.

    Many of us fighting this cancer have the learned the importance of multiple opinions, and your story helps to affirm that for us once again. Like you, I am here to continue the fight because a second opinion gave me a chance for a resection…two actually. We found an aggressive surgeon with the skills to back it up.

    Later, before I started adjuvant therapy, I actually started an email thread where my team (my oncologist, two radiation oncologists, my hepatologist, and my surgeon) discussed…and sometimes argued…about the best course of action. There were multiple opinions, and eventually some consensus. Still, I had to make a final decision about a course of action, but now had much more information to make that decision.

    So you are doing this just right. Congratulations on the new surgery date, and I will pray for a good outcome and more good news!

    All the best, Mark

    in reply to: Hi y’all….from the South. #62267
    mparsons
    Spectator

    Hi Debbie,

    I am very sorry to hear about your mother. Please understand that I am only speaking from my own experience here, and don’t want to give false hope, but I wonder about a second surgical opinion. Lymph node involvement does reduce the longer term “cure rate” of a resection, so some just won’t do it. However, it does not make a resection technically impossible, so unless there were other reasons a resection is not possible — like vein or artery involvement, etc. — you might get a second opinion.

    I had a similar experience. One medical center would not even consider surgery because I had multiple regional lymphatic tumors. A more aggressive surgeon at another medical center believed that surgery would still provide longer and better quality of life than other treatment options, and agreed to do the resection (and lymphadenectomy). Happily, he was able to provide us with a good outcome.

    I do hope your mother finds new strength and determination. I know how hard it is. My best wishes to you both as you go through this confusing and complicated time.

    Mark

    in reply to: Where to now? #63254
    mparsons
    Spectator

    Hi again Claudia,

    I know from being on Xeloda myself that Genentech does have financial assistance for Xeloda, but only for those on commercial insurance. So, unfortunately, it does not apply to those on Medicare. I know you’re going with a different treatment, but thought it might be good to know you are not missing some financial benefit by your decision.

    Best, Mark

    in reply to: Where to now? #63251
    mparsons
    Spectator

    Hi Claudia:

    I am sorry to hear about your father, but it sounds like you are taking very good care of him, and MD Anderson is one of the very, very best places for treatment of this cancer. To respond to one of your questions, one difficulty with this cancer is that usually is late stage when diagnosed. Symptoms tend to present very late. My symptoms appeared quickly over just a few days — jaundice — and by that time I was already Stage IV. I never experienced pain or other discomfort. In that is also a positive lesson. With treatment, even in late stage, many of us are fighting this and adding time and quality of life.

    All the best to you and your father as you continue through this together.

    Mark

    in reply to: New to the Boards #62888
    mparsons
    Spectator

    Well, Misty and Pops, I think infuriation is a perfectly natural response in this situation! I’m stunned by what your oncologist said. I think it shows your treatment options there were going to be limited, and confirms that you are making a good decision in seeking other opinions. You’re staying in my thoughts and prayers.

    Mark

    in reply to: Hello, I’m new #63105
    mparsons
    Spectator

    Hi Lisa,

    I am deeply sorry to hear about your husband’s diagnosis. My wife and I are similar in age as you and your husband, and still have the two younger kids at home. We understand the shock and disruption that comes with this diagnosis during this time of life.

    What you’ve experienced is unacceptable, simply put. We had a similar experience at the first big, nationally ranked medical center where I was being treated….so my wife pulled me out of there. What we all do deserve with this disease is a place where the people are thoroughly knowledgeable, will treat us like individuals, and will be aggressive in fighting on our behalf. Such places and doctors do exist, as many have shared on this site. Not only can such a place be medically life changing, but it simply provides the basic comfort of knowing that no matter what happens, you are being well cared for. It sounds like you are now seeking better care, and my thoughts and prayers go with you on this journey.

    Mark

    in reply to: New to the Boards #62879
    mparsons
    Spectator

    Hi Misty,

    I’m very sorry to hear about this setback with your father-in-law. A successful, margin-negative resection is considered the first choice “cure” with this cancer, so I’m sure this news is especially difficult to accept after an apparently successful surgery. With this cancer, though, most of us have had to deal with these sorts of setbacks, so we understand and will continue to keep you in our thoughts and prayers.

    I will say I am here at this moment because of a second opinion. I was told that I was not a candidate for surgery, but another medical center disagreed. I will also say that as a patient I was too tired and sick to care about seeking a second opinion, but my family was tenacious in getting one, and it saved my life. As others have mentioned, MD Anderson has a great reputation for treating cc.

    All the best to you as you go through this challenging process.

    Mark

Viewing 15 posts - 76 through 90 (of 92 total)