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Bile duct cancer

Rebel_Raised
Posts: 7
Joined: Oct 2011

I am a 38 year old male that was diagnosed with stage II Bile duct cancer in April 14, 2011. While having my gallbladder removed the surgeon found a tumor on my liver. He took a biopsy and it came back as cancer. I was sent to Denver and on April 29th I had a liver resection completely taking the left lobe of my liver. The surgery was successful with great margins. My lymph nodes came back clear. I donated the 8cm tumor and liver to the University of Denver for research under Dr. Steven Le Long. I spent 8 days on the transplant ward post surgery & 6 more in a hotel before I came home to north eastern Wyoming.
After 5 weeks of recovery the cancer team decided due to the aggressive nature of the cancer & my family history( father 36, his brother 20 & his sister 36 all passed from colon cancer) that I would start 6 cycles off chemotherapy. I had a power port placed on my right chest & started a cocktail of Cisplatinin & Gemzar in June. Chemotherapy has been rough with nausea & swinging 20lbs every cycle. Tomorrow is my las treatment.
I have had a recent MRI & still I am clear & my tumor markers are zero. I am now starting 28 treatments of radiation as another way to insure I get the best chance of beating this stuff down. I have been fairly positive during this battle. I have never said why me or felt bad for myself. I started seeing a counselor after surgery as another way to fight. It is my cancer & my fight alone when it came down to it was my belief. My wife and four kids have been supportive & strong. Very proud of them all for stepping up & not letting this illness stop their lives.
I feel I am a survivor and I am in remission at this point. I do admit after 7 months of this I am beat down tho. Mentally it gets harder everyday to stay strong for myself & my family. I know I have been blessed & lucky so far to this point. I would love to know if anyone actually has beat this stuff. To find someone who has been in remission for a couple of years even.

northa914
Posts: 87
Joined: Mar 2011

You truly have been blessed and are very fortunate that your cancer was caught at an earlier stage where resection was an option. From the sounds of it, you’re in a better position than most when it comes to this horrible disease so try to keep your eye on that ball. Your cancer team isn’t taking any chances that you don’t have rogue cells still trying to hold a flash mob somewhere else in your body, because all it takes is one to cause a problem. I’m so pleased to hear that you’re in remission and that your fight has been successful! And it sounds like you have an amazing support system in your family and cancer team!

I have stage IV cholangiocarcinoma with mets to my bones and lesions in my pancreas (the pancreatic lesions have been deemed of no concern at this point). I have multiple lesions in my liver, two of which are quite large (9cm and 5cm). After one year and two months of Gemzar/cisplatin therapy and three TACE procedures, the two largest lesions are shrinking and the others are stable in number and size. My bone mets are stable in number and size also, and no new mets have appeared. Just today I started on Xeloda with the goal of shrinking my largest liver lesions further to the point where my cancer team can either resect them or use radiofrequency ablation to burn them. I’ve been fortunate that the therapies have given me minimal side effects, mostly fatigue and the dreaded chemo-brain. But I haven’t let the cancer get me down. I live my life as if I don’t have cancer and treat my body like it does. I’m a single mother with two young boys who need me to beat this, and I have every intention of doing so. By the statistics I shouldn’t be here, heck, one doctor said that I wouldn’t make it through last summer (I was diagnosed in June 2010). And I, too, have an awesome support team in my family, doctors, and friends (one of whom I met through this site, she knows who she is!!! :) ). While I probably will never be in remission, I have every intention of keeping this disease at bay and watching my children – and someday my grandchildren – grow up. You being beaten down after seven months of fighting the cancer monster is totally understandable. You’ve not only been beaten physically by the cancer, surgery, and chemo; you’ve been beaten emotionally, and perhaps spiritually too, just trying to grasp the fact that you have cancer and picking yourself up on a daily basis and running with it. It’s gotten easier for me as time passes as I’ve realized that every day I wake up and can hold my boys and kiss them goodnight, love them and be annoyed with them, teach them something new, and just watch them grow is truly a blessing. I have one item on my bucket list, and that is to provide a normal life for my boys and be here for them through all of the milestones in their lives.

You ARE a SURVIVOR, and an example to us that we can beat this as I sincerely believe you have!!!

Andrea

P. S. I forgot to mention that I was 48 when diagnosed with no risk factors (ie hepatitis, cirrhosis, primary sclerosing cholangitis)

Rebel_Raised
Posts: 7
Joined: Oct 2011

Andrea,
Thank you so much for sharing your story. This is the first time I have reached out to the community. You sound strong & have a real handle on this illness. I haven't been able to work during the whole process & I know that is what beats me down more. The lack of a normal daily life as I watch my friends & family go on with their life's takes a mental toll also. When you look at the boards & the statistics things can seem gloom. Your outlook on it is positive and really helped boost me up again.
I know I got this beat & I refuse to think any other way. I hope my cancer can be used to find better treatment options & maybe lead to a cure someday. This was the path I was given and like you I hope I can help others also to get them through their battle.
Stay strong,
Sean

northa914
Posts: 87
Joined: Mar 2011

If you ever need to reach out, please feel free to email me at andreanorth@loopmastersinc.com. If you're like me, you don't like to express your fears and frustrations to your family or friends as you feel it's better for all parties concerned (you included) if you - as my good friend puts it - "Fake an Eight". The power of the mind is truly a big help, and it did get easier for me. But it’s not always easy to keep your chin up, so on the days you feel down, it may help to "talk" to someone (that would be me or...?) who knows what you're going through and how difficult it is sometimes to keep pressing on. Perhaps another route to take to keep you in a more positive zone is to get a second opinion regarding your progress. I had a second opinion that my insurance covered at the City of Hope after I was first diagnosed and a third opinion just last Friday the 14th at CTCA (Cancer Treatment Centers of America) with one of their naturopathic oncologists and one of their medical oncologists. The third opinion wasn’t covered, and was for nutrition and supplement recommendations, and to see if the path my doctors are on is on target. I requested to change my primary oncologist (it’s a long story, but I’m SO happy I did!), and I wanted to make sure he had done right by me for the year and two months I was under his care (we’ve found he could have done better). It sounds like you’re getting excellent care, but it doesn’t hurt to get another opinion from another reputable entity. Always be proactive and ask tons of questions as cancer can be pretty sneaky. I look at my life as a perpetual game of Whack-A-Mole, where the vermin pops up from random holes, and in order to win you need to hit their heads with a mallet to get them to retreat. You are in a much better position than I am in regards to your cancer, and I have faith that you’ll be a long-term survivor!

Oh, and regarding statistics. They include people of all ages who've received various treatments at various stages from various doctors, and you're an individual who is different from them. And from a mathematical standpoint, 4 survivors out of 1,000 is still 0% assuming the figures use the standard method of rounding. Count yourself as one of the four! :)

Andrea

Rebel_Raised
Posts: 7
Joined: Oct 2011

As of my last post I have went through 32 radiation treatments ending in November. I went to physical therapy to improve quality of life in hopes to returns to work. In January on this year I had my power port removed before I returned to work part time. My Last scan in february showed a fluid mass in my liver. A needle biopsy was performed and the cyst was drained. The biopsy came back clear of disease. I was doing great, strong working and working out. Then I hit a wall. Neuropathy showed its ugly head with all over body pain and numbness. Doc said its a late side effect of the treatments I've had.
I also have been dealing with great anxieties trying to find my place in life again. All the while trying to keep the neuropathy under control. The anxieties have lead to depression at time. I am disease free at this point and I plan on fighting to stay that way. The short burst of strength and somewhat normal life was great while it lasted. The side effects are hard to deal with at times but I've got through the cancers so far and this is just another speed bump along the way. I know my life is changed forever and I will never be the same. If I can maintain 80% of who I was I will be fine. Tomorrow i go for an EMG to see how bad the neurological damage from the chemo is. Got to prove to my disability insurance I am partially disabled still. They don't understand my hands don't work right and I get tired fast.
The 29th April will be one year disease free! :-)

northa914
Posts: 87
Joined: Mar 2011

I sent a private email to you via the CSN Email link. Hope it helps!

Andrea

Rebel_Raised
Posts: 7
Joined: Oct 2011

As of my last post I have went through 32 radiation treatments ending in November. I went to physical therapy to improve quality of life in hopes to returns to work. In January on this year I had my power port removed before I returned to work part time. My Last scan in february showed a fluid mass in my liver. A needle biopsy was performed and the cyst was drained. The biopsy came back clear of disease. I was doing great, strong working and working out. Then I hit a wall. Neuropathy showed its ugly head with all over body pain and numbness. Doc said its a late side effect of the treatments I've had.
I also have been dealing with great anxieties trying to find my place in life again. All the while trying to keep the neuropathy under control. The anxieties have lead to depression at time. I am disease free at this point and I plan on fighting to stay that way. The short burst of strength and somewhat normal life was great while it lasted. The side effects are hard to deal with at times but I've got through the cancers so far and this is just another speed bump along the way. I know my life is changed forever and I will never be the same. If I can maintain 80% of who I was I will be fine. Tomorrow i go for an EMG to see how bad the neurological damage from the chemo is. Got to prove to my disability insurance I am partially disabled still. They don't understand my hands don't work right and I get tired fast.
The 29th April will be one year disease free! :-)

Rebel_Raised
Posts: 7
Joined: Oct 2011

As of my last post I have went through 32 radiation treatments ending in November. I went to physical therapy to improve quality of life in hopes to returns to work. In January on this year I had my power port removed before I returned to work part time. My Last scan in february showed a fluid mass in my liver. A needle biopsy was performed and the cyst was drained. The biopsy came back clear of disease. I was doing great, strong working and working out. Then I hit a wall. Neuropathy showed its ugly head with all over body pain and numbness. Doc said its a late side effect of the treatments I've had.
I also have been dealing with great anxieties trying to find my place in life again. All the while trying to keep the neuropathy under control. The anxieties have lead to depression at time. I am disease free at this point and I plan on fighting to stay that way. The short burst of strength and somewhat normal life was great while it lasted. The side effects are hard to deal with at times but I've got through the cancers so far and this is just another speed bump along the way. I know my life is changed forever and I will never be the same. If I can maintain 80% of who I was I will be fine. Tomorrow i go for an EMG to see how bad the neurological damage from the chemo is. Got to prove to my disability insurance I am partially disabled still. They don't understand my hands don't work right and I get tired fast.
The 29th April will be one year disease free! :-)

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