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 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

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

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

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

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)

Today was my first CT after two cycles of Gemcitabine and Cisplatin.  Prior to the treatment, I had a large liver tumor, some lymph node involvement, and some nodules in and around the head of my pancreas.  The only hope that I'd been given was to pray that the chemotherapy controlled the spread, do chemoembolization to beat up the liver tumor, and then do massive, risky surgery including a liver resection and whipple.

Well, my surgeon was shocked by the progress that I'd made in two cycles.  He said that the pancreatic disease was controlled; there was no further spread; and the liver tumor shrank substantially.  The docs couldn't give me a percentage reduction in size, but said that it was, "conclusive and exceptional."  They also said that if the tumor continued to shrink, the surgery would be much less risky. 

I'll have another cycle of this, please!  The docs agreed that we'd stay the course on the gem/cis for now and reevaluate regarding chemoembolization after another cycle.  They also told me that they weren't planning to do any surgery before the New Year.  Unless something drastically changes, it will be a great holiday in my household!

This is the first real, positive news that I've had since I was diagnosed back in July.  I realize that I've got a long road ahead, but am celebrating this victory!

-Z

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(21 replies, posted in Introductions!)

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

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(21 replies, posted in Introductions!)

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

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(21 replies, posted in Introductions!)

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

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(21 replies, posted in Introductions!)

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

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(21 replies, posted in Introductions!)

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

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(21 replies, posted in Introductions!)

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

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(21 replies, posted in Introductions!)

I've just discovered this site, the discussion boards and the struggles and hope that are contained here.  Here is my story as an introduction:

I am a 35 year-old man, and I was diagnosed with cholangiocarcinoma in early July, 2009.  At that time, there was a 12cm, poorly-differentiated tumor in my liver and some involvement in the surrounding lymph nodes.

I am lucky to live in the Washington, D.C. area (at least with respect to this) and am being treated by the doctors at the National Institutes of Health's National Cancer Institute.  The surgeon there advocated for aggressive liver resection followed by chemotherapy.  This was the opposite of what my other doctors had suggested.  However, after much soul-searching, my family and I thought that the NIH route would be the best, so I signed up.

Unfortunately, I also have an intestinal disease called Crohn's disease.  I had two previous abdominal surgeries that left me with a lot of scarring on the inside.  Also, there was some damage to my remaining, non-cancerous liver that was done by the Crohn's drugs.  Finally, when they got inside to do the surgery, it looked like there was some cancer in the distal bile duct near my pancreas.  After all of that, the surgeons decided to sew me up without removing or resecting anything.

So, now I'm finishing up my first course of Gemcitabine and Cisplatin.  I'm in the  "one week off" part of the 21 day cycle.  I seem to be tolerating that well, with only a bit of fatigue.  The hope is that some combination of this treatment and chemoembolization will make surgery a better option.  However, it looks like the surgery that could prolong my life is both a radical liver resection and a whipple procedure.  To say the least, that is terrifying.

I look forward to continuing to read the information that is here.  Thank you all for everything that is already done, and I look forward to contributing some tidbits of information so that others may be helped.