Introductions
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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
Hi Zupton,
I am sorry about your diagnosis. My wife’s cholangiocarcinoma was found when it metasticised and was 8cm in the liver. Since she originally had cancer of unknown primary, we couldn’t take many actions. Since yours is defined, the Mayo has had very good luck with transplants for pancreatic patients. Maybe they can remove the cancer with a whipple and transplant your liver. http://www.mayoclinic.org/bile-duct-cancer/
My wife had SirSpheres implanted, which didnt work and was possibly done too late,that could be another option.
From the chemo standpoint, there are significant POSITIVE results coming out the treatment of some nasty cancers (triple neg breast cancer) with PARP inhibitors and trials will be done for pancreatic cancer. check out http://www.parp-inhibitors.com/parpinhibitors.htmlSince time is important and a given drug(s) only work for a fraction of the people, look into personalized testing of your tissue to see what wont work, 8 weeks is too long to see if you fit in the 15-30% that a drug works.
It is a tough battle, I wish you the best of luck. Contact me via email if you need anything including the list of resources that I have developed.
Regards,
Murray
zupton wrote: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.
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
Zupton, I too have Crohn’s Disease and have been told it led to my cc through PSC. I am very hyper from the steroids given with my chemo dose of Gemzar and Zeloda. It has helped my Crohn’s symptoms, tho. I have had surgery and scarring from a bowel resection, too. They have considered resection twice for me but then changed their mind. I have had 8 months chemo, radiation to the liver, but also have mets to the abdominal wall. So I am no longer a candidate for surgery. CC and Crohn’s. Fun, huh?
I’m glad they’re going to tweak your steroid dosage & I hope it helps a lot.
If “visualisations” help, remember that, as Zorro, you’ll get to fence with Catherine Zeta Jones!!
Hi Zach. OK, so you are now Zorro. My Teddy is the Miracle Man and I have put Kris & Lisa in the boxing ring with pink sequined robes and pink leather gloves (not to fight each other though). I am game for any one else who desires a “name”. I must say you sound like a very upbeat, wonderful man and you fit right in our big family!
What steroids did for me, aside from helping me fight nauseousness, was to elevate my blood sugar. Thus, the need to learn more about diabetes while fighting cancer. Between chemo, menopause, and diabetes, that was a lot to learn at once! Thank goodness some of that is behind me and hopefully, will never return. And Zach, be glad the menopause won’t be your issue
LouiseJulia,
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
Welcome Zach!! I love your goals – brilliant!! Please will you upload the photos of both weddings afterwards?
I’ve been going through a particularly emotionally-bleak phase for a day or two but your goals reminded me that good things will still happen & I need to get back on my horse (metaphorically speaking – I’ve never been on a horse in my life & have no particular desire to start now!!
)I can see the slash of the burning “Z” before my eyes as I type.
Julia
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
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
Hi Zupton,
Pretty effective cocktail for me, hope it is for you also. They had hoped the Gem/Cis combo would shrink my tumor enough to do surgery, but it shrank the tumor to the point that it didn’t show up on the scan at the end of six cycles. Of course, cc was not done with me yet, but I am again in remission and I’ve fought the good fight for over 2 years now. Yes, I’ve been told that my life expectancy is short, but I don’t usually believe that. I try to live life to the fullest, keeping active and working full-time. I have some pretty good incentives (and helpers) in my family. I have 2 boys still in high school and the senior has a serious relationship with his girlfriend. My earlier goal was to be around at least long enough to see these two join my older 4 in being high school grads. Now, I want to be around long enough to see the 17-year old finish college and get married! So, hang on for the ride of your life as you fight this battle and plan your future!
LouisePS, Kris, I’ve never bought high heels. Can’t stand the feel and need the benefits of a comfortable fit.
Hi Zupton,
Welcome to the site, although I am sorry that you have to be here. As Kris said to you, we are indeed a friendly bunch and you will get loads of support and help here.
I will keep everything crossed for you and hope that the chemo will do it’s job.
Good luck and my best wishes to you and your family.
Gavin
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