zupton

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  • in reply to: First Scans on Gemcis – Great News #32550
    zupton
    Spectator

    I’ve got a brand new treatment plan. I think that it is much better than the single option that I had before, but I am anxious about the future.

    Based on my response to the Gemcitabine and Cisplatin; the condition of my liver; and fear about doing a liver resection and whipple at the same time (from both the surgeon and me); my surgeon, my wife and I have agreed on a new treatment plan:

    First, I will have Transarterial Chemoembolization on my liver. The hope is that this will further shrink the liver tumors. We’ll do three of these “procedures” over the next three months. I had a set of scans last week that indicated a new lesion on my left lobe. This was the healthy part of my liver…..

    Assuming that the TACE works, we’ll take a few weeks off and then do the whipple procedure to remove the disease that is outside my liver. While he’s got me opened up, the surgeon plans to burn my liver tumors with microwave ablation.

    Assuming that works, I’ll recover from surgery and then have a few more months of Gem/Cis.

    Assuming nothing new and awful crops up, we’ll get ready for liver resection.

    I’m not sure what to think about this plan. I’m optimistic, but there are a lot of “assumes” in there. It’s certainly better then flipping a coin with my life (they gave me a 50/50 shot at surviving the other surgery). One day at a time………

    So, my first TACE treatment is tomorrow. I’m nervous about the procedure itself and pain and nausea that I’ll have in the 12-24 hours following the procedure. Wish me luck!

    -Z

    in reply to: What cancer center sees the most bile duct cancers? #34840
    zupton
    Spectator

    In my six months of experience having the disease, I hear the following names, in order:

    Mayo
    MD Anderson
    Sloane Kettering

    I’m being treated at the National Institutes of Health. They certainly see thier fair share of CC patients, but it is kind of a unique place to get into and be treated. You have to be referred and also accepted onto a clinical study.

    Best of Luck,

    -Z

    in reply to: First Scans on Gemcis – Great News #32546
    zupton
    Spectator

    Jane,

    There is a post down the line, I think on December 30, 2009 or something like that where I describe my progress. The bottom line is that I’ve been very lucky. The Gemcitabine (Gemzar) and Cisplatin combo have been very effective with my tumors. According to the docs the tumor in my liver is “dramatically” smaller.

    Early on, the side effects that I felt with this cocktail were minimal. It was just a couple of days of tough fatigue. I shaved my head preemptively, but it turned out to be unnecessary. I’ve had a full beard the entire time. Now that I’ve had 4 1/2 cycles of this, the side effects are somewhat more pronounced. I’ve had no nausea, but I do have a great deal of bone pain. The docs think that this is a side effect of the Neulasta shots that I give myself after chemo and not the chemo itself, but who knows? The other side effects that I’ve had include increased tumor pain, longer-term fatigue, and some “chemo-brain.” My aunt, a breast cancer survivor, describes chemo-brain as a lot of short term memory loss…..I’m definitely there. ;-)

    From what I understand, I’m lucky in both my response to the drugs and my overall lack of side effects. Don’t get me wrong, this hasn’t been a picnic for me or my family, but the results have been worthwhile.

    Best of luck to you. I don’t know anything about your new treatment but would love to hear about the results.

    Keep strong,

    -Z

    in reply to: First Scans on Gemcis – Great News #32540
    zupton
    Spectator

    Thanks Beth! I appreciate the advice.

    As an update, I had new scans in late November. They showed continued progress! I’ve done a fourth cycle of the same regimen and will get the first dose of the fifth cycle tomorrow. After that, they’re going to cut of the chemo for six weeks prior to surgery.

    The surgery will be a tough one. They plan to take up to the maximum of 75% of my liver AND do the whipple. I have a huge list of questions for the surgeon before I sign up to this, but he thinks that it is the way to go if I want to have a chance at long term survival. After the surgery, I understand that they want to keep me at the National Institutes for Health for a full month to make sure that I recover smoothly and that my liver regenerates correctly.

    This is a lot to look forward to in 2010. Happy New Year to everyone!

    -Z

    in reply to: Can it be true – no cancer?! #33969
    zupton
    Spectator

    CONGRATULATIONS!!!! That’s the best news you could hear! Thank you for posting your news here. It helps to keep the hope going.

    in reply to: First Scans on Gemcis – Great News #32534
    zupton
    Spectator

    I love this board!!! There is so much support here, whether I have good news or bad. I just wanted to stop by to say thanks to you all.

    I’m really feeling the Zorro thing. Carving a Z in the disease is a cool image. My surgeon says that he’s had people ask him to write all kinds of things on their livers during surgery. I told him that I just want a chunk of tumor to stomp on. He actually agreed! It will be a fun day once these wretched things come out of my body.

    I’m just hoping that I’ll have the stamina on Halloween to participate. I’ve got a chemo treatment on the day before, so I’ll probably be pretty wiped out on Halloween….

    One day at a time.

    -Z (Zach)

    in reply to: Introductions #31414
    zupton
    Spectator

    Murray,

    Thanks. I was going to take part in a PARP inhibitor study at NIH, but alas I was disqualified because of my long-term and ongoing exposure to another chemotherapy agent, 6-mercaptopurine, for my Crohn’s diseaase.

    My liver tumor is poorly differentiated, but all signs point to CC. However, I assume that the surgical result finding cancer in my distal bile duct is pretty definitive.

    It’s not a bad idea to contact Mayo while I’m getting this current treatment.

    Thanks for all the suggestions. I post this here so others with the Crohn’s/CC combo can be forewarned about 6-MP.

    -Z

    in reply to: Introductions #31412
    zupton
    Spectator

    Barbara,

    I’m so sorry to hear that you also struggle with Crohn’s and CC. Four months ago, I thought that having Crohn’s was challenge enough!

    I hope that your treatments help. I will keep you in my thoughts and prayers.

    -Z

    in reply to: Introductions #31406
    zupton
    Spectator

    Julia,

    Thanks for the note! I’m glad that I’m already helping…even when I don’t intend to!

    I also had a an emotional week. However, a visit to my oncologist today led to one of those “Duh!” moments. I knew that I was getting a bunch of steroids as part of my anti-nausea routine. The connection that I failed to make was that I don’t do well physically or emotionally on steroids…especially when I come off of them. This might explain the fact that I haven’t been able to sleep, that I’ve been short-tempered, and that my emotions are pretty close to the surface!
    The docs are going to change the steroid dosage a bit.

    I grew up on a farm, riding horses and the resulting turns of phrase work for me!

    I forgot about Zorro’s hat. I’ll need one of those black, flat-brimmed hats.

    -Z

    in reply to: Introductions #31404
    zupton
    Spectator

    Oooh, can I have the cape, mask, and sword, too???? That would make this battle fun. It’s just Zach for now, but I might consider a name change when I come out the other side of this.

    Thanks Lainy,

    -Z

    in reply to: Introductions #31402
    zupton
    Spectator

    Thanks to everyone for the kind welcome! It’s nice to feel like I’m not alone.

    In answer to Ashley’s question, I don’t know if I have PSC or not. The docs told me that they could do more tests to find out, but that it wouldn’t change anything about how they’d treat the cancer.

    We’ll see how this Gem/Cis treatment works. After each of the infusions, I’ve felt better….In the meantime, I’m going back to work on Monday, and am excited to have something else to fill my mind.

    My surgeon, in his ever-optimistic tones, has told me to plan for a long life. So, I’m setting my goal on dancing at both of my daughter’s weddings. One of them is 4 years-old and the other is 21 months old! There’s nothing like setting those goals high, right?

    -Z

    in reply to: Introductions #31395
    zupton
    Spectator

    Thanks for the kind welcome. This has all been quite a whirlwind for me. It’s nice to have some time (weeks) during chemo to digest things.

    Overall, I think that I’ve lead a pretty good life….this is just the next step in the journey for me. I’m hoping that the chemo will be successful enough that they can do the whipple and resection SEPARATELY (or maybe no whipple at all). My surgeon says that doing the two procedures at the same time has about a 50-50 survival rate, and that’s just getting through the first 24 hours. Needless to say, my family and I have some tough decisions coming.

    Right now, I’m praying for the chemo to work, praying for my wife and kids, and hoping that I’ll get through this. Thank you for the welcome, and I hope to keep posting as I go through this.

    -Z

Viewing 12 posts - 1 through 12 (of 12 total)