1

(28 replies, posted in General Discussion)

Hang in there Byron!  Let your body heal and then continue with the chemo. 

Regards,

Trevor

2

(171 replies, posted in General Discussion)

Tom,

Gas-x really helps with the gas and bloating.  Always helped me. 

Trevor

Thank you everyone for your continued support.  It is very easy to concede to negative thought in this long fight.  I try to be a realist with a positive outlook. 

I have scans again in two weeks, another big determinant in what is going to come next. 

Jim, I am being treated at the Mayo Clinic in Jacksonville. 

Keep the Fight!

Hello everyone,

I do not post on here that often though I frequent board looking for suggestions and advice on how to combat this horrible disease. 

A quick update.  Last month, I received good news with my scans.  Fluid in my peritoneum had gone away and the tumors in my abdomen shrunk tremendously.  I also showed two tumors below my small intestine.  One stayed the same size and the other saw a good decrease in size.

My oncologist has mentioned if there is continued progress, then resection or intraperitoneal Chemo are possibilities.   

I am approaching my 7th treatment on Oxali/Gemzar.  Overall my weight and appetite have remained stable. 

I am active, I take tango lessons once or twice a week and eat fairly healthy. 

Now in lieu of all of this, I sometimes loose sight of the big picture.  Like where is all of this going?  I try to stay in the moment as much as possible.  Though sometimes I think bad thoughts.  Specifically when the doctor estimates the amount of time you have left. 

Like the Shirelles sing, 'there will be days like this mamma said.' 

I have read a lot of stories on here of people defying the odds.  And it is o empowering to hear that. 

How does one stay positive?  To not succumb to morbid thoughts? 

Thanks again. 

Let's keep the fight...

Trevor

5

(2 replies, posted in General Discussion)

Hello everyone,

I had scans yesterday and the results were encouraging.  I suffered recurrence 3 months ago.  At the time of diagnosis, there was a fair amount of fluid found in my omentum.  That fluid appears to be gone. 

Also there were small bead like spots found along my omentum, many of which were not visible on imaging as well.  Two spots were found below my small intestine, one is stable and the other has shrunk drastically. 

So I am happy there is some disease regression.  My CA 19-9 decreased from 15,000 to 900. 

With all the good news, I am wondering if I should take on a third chemo in addition to the Oxali/Gem I'm on right now run at a much smaller dose, such as Avastin?  My 4th treatment is next week and I seem to be tolerating it well with little side effects. 

Or would this be toxic and too much of a risk? 

Thanks again everyone. 

Keep the Faith,

Trevor

6

(3 replies, posted in General Discussion)

Hello everyone,

It has been awhile since my last post.  I have experienced some major ups and downs the past couple months since being diagnosed. 

I was diagnosed with recurrent cholangio in late June of this year.  I was put on Gem/Cisplatin and only got through 2 cycles due to subsequent chemo toxicity which caused me to be hospitalized for a week. 

Since then I have been switched to Oxali/Gem (currently have had 3 cycles) which I have been tolerating quite well. 

My concern are the scans.  I have a CT this Friday and do not know what to expect.  As many of us know, the progression cholangio is very difficult to predict.  Despite this, I was wondering if there are any signs that could point toward a positive outcome? 

Like the CEA 19-9?  At the time of diagnosis, mine was 9,000, so is it fair to assume that anything lower than that would be good?

I have been out of the hospital for over a month and have been able to gain my appetite and some weight back that was previously nonexistent. 

Most of the time, I feel good, minus some nausea and fatigue that comes with the chemo. 

Thanks again everyone! 

Trevor

Hello everyone,

My last chemo treatment was 10 days ago (just Gemzar, I had to stop the cisplatin because of vomiting and nausea).  While on chemo I was also on TPN, until I was hospitalized with a bacterial infection. 

I was supposed to have chemo today but I am still in the hospital with the infection.  The doctor had said that I could be in here for up to a week.  Will discontinuing the chemo for a week or so more make a difference with the treatment?

Trevor

Michael,

I am currently facing similar circumstances.  Your mother can try TPN with a PICC line, though there is a risk for infection.  How about options for a feeding tube? 

Good luck...

Trevor

9

(10 replies, posted in General Discussion)

Hello everyone,

I am still in the hospital and started receiving TPN treatments today.  My nausea and vomiting have improved since it has been 10 days since my last chemo treatment.  I will be having another treatment Friday so I may be on TPN indefinately. 

I have lost a significant amount of weight over two months, about 25 lbs.  I have tried the marinol with mixed results.  Zofran sublingual seems to work for me. 

I know I have to put back on weight in order to effectively fight this. 

Thank you everyone for your kind words.  I have talked to fellow cancer survivors and they all say you have to be proactive in your treatment and be the 'Captain' in your fight. 

We're all on this together...

Trevor

10

(10 replies, posted in General Discussion)

Hey everyone,

Has anyone experienced problems with Gem/Cisplatin chemo?  I have been experiencing extreme nausea and weight loss.  (MY cc is also spread through my omentum). 

Everything I eat I throw up.  I dunno if its the cancer or the chemo.  I am currently in the hospital being treated for nutrition, here at the Mayo Clinic in Jacksonville. 

I am taking zofran and an anti-nausea sepository for the nausea, which works with mixed results. 

I would like to keep my nutrition up so I can withstand the chemo and fight the cancer. 

Any ideas? 

Trevor

11

(1 replies, posted in General Discussion)

Hello, my name is Trevor and I am new to the board.  I was recently diagnosed with recurrent cc in the omentum, all along the abdomen.  I begin standard chemo today. 

I do now know what to expect.  Has there been successful treatment of recurrence?  I know it depends on how the individual responds to the chemo. 

Any ideas and help would be great. 

Thanks for everyone's help.

Regards,

Trevor

12

(2 replies, posted in Introductions!)

Hello, my name is Trevor.  I was diagnosed with cholangiocarcinoma in Mar. 2009 and had successful OTL in December 2009. 

Recently my CA19-9 counts have risen to 9,000.  A ct scan revealed a thickening of my omentum, which makes them highly suspicious of recurrent cholangiocarcinoma. 

I have never had recurrence before. 

Are there people who have had similar experiences?  If so could you please share them with me? 

I am concerned that the recurrence is in the omentum as it might not be resectable. 

Any help would be greatly appreciated!

Thanks,

Trevor