1

(23 replies, posted in General Discussion)

Trish

I will pray for your mother right now.  I am so sorry to hear this.

Robert

2

(31 replies, posted in General Discussion)

Oops that is VA Hospital in Houston (I used to live and work at the VA in Denver sorry)

3

(31 replies, posted in General Discussion)

Well I am being seen at the Micheal E. DeBakey VA Regional Hospital in Denver.  And as you may or may not know you have system you have to go through.  The first doctor who noticed the liver function increase was a primary care physician.  The Radiologist did recommend an MRI after I did the ultra sound a year ago but my Doctor decided it was un-necessary based on my age, general health, and no other indicators.  It wasn't until I presented about 8 weeks ago with pain and digestive issues that things started to get checked out.  But by that time the tumor was too large and had spread to other sites and so now I am not a candidate for surgery.

I am a 42 year old male (be 43 in November).  I really want to go somewhere else but I am trapped.  As a Pastor for a very small church I am not finanically able to go anywhere else for treatment.  I always had to suppliment income by doing side jobs remodles, furniture making etc.  Thats a thing of the past at least for awhile. 

I think I have some good Oncologists but it's the VA Beuracracy that is going to be the death of me.  I've been assured once treatment starts it will all be agressive but it's the intermidable waiting.

4

(3 replies, posted in General Discussion)

They have given me something for nausea but nothing for digestion I will ask thank you.

5

(31 replies, posted in General Discussion)

The reason that I question it is that I did have an ultrasound of the liver in August of 2010 after my liver panel came back elevated.  At that time the report says nothing was visible though they could not confirm the deep tissue.  They recommended an MRI but becuase of my age and overall health my Doctor decided against it.  So in essance the tumor grew from unvisable to 13.3x9x12 in a year and a half. 

I am asking because my Doc's don't seem to be moving fast at all.  My latest scan shows two more lesions on my liver, 2 lymphnodes and multiple hot spots all in that 1 1/2 years to me that is agressive.

6

(14 replies, posted in General Discussion)

Hi Shari... I really don't know anything yet I'm just getting my feet wet but what I can say is I am praying for you.  I wish for you a good PET scan in November and will look forward to you informing us of that in the days to come.  May God bless you!

Folks, I am new here and don't know much about anything.  But what I do know is that I am in almost constant pain either from my tumor itself or from my intestines.  I am doing all I can to find things to eat that would be digestable and also not cause gastrointestinal troubles.  It's almost impossible so far.  I have been considering simply juicing vegtables and fruits and drinking boost or ensure for protein but I REALLY would like to be able to eat a little something something.  I've tried salads but even that causes great bouts of gas and bloating and general uncomfortable.  Any advice will be greatly appreciated.

Robert

8

(31 replies, posted in General Discussion)

Thanks Everyone!  Susie I will give it a try.  I talked to my Oncologist and he said if I did not have pain it would be ok until I come in to clinic.  So I guess I will have to wait. 

I was told that I am not in a surgical state at present the cancer has matastisized.  My Biopsy (which I think should have been done along time ago) is scheduled for this Friday and then treatment after Pathology comes back. 

Can I ask anyone who might know is CC normally this agressive?  I mean 2 years ago there was no sign of anything in my blood.  1 1/2 years ago I had elevated liver functions and now I have a huge tumor, two small lessions on the liver, two infected lymphnodes, and hotspots throughout my abdomen.  Im trying to figure out if the growth speed is being considered by my doctors adequately.

9

(31 replies, posted in General Discussion)

HELP I have a new symptom.

During my stay in the hospital last week I noticed by accident that my right testicle was enlarged quite a bit.  I showed it to my General Surgeon and he said it was nothing.  Now the testicle has grown to 2x the size of the other one.  It does not hurt but it is adding to this stress.  Does anyone know if this is part of the same problem or is this something else?  Is it possible to have testicular cancer at the same time?  Wouldn't the PET scan have picked it up or did they have to look specifically at the testicle for that (I think they did a full body scan).  Please if you know anything take a moment and tell me.

10

(31 replies, posted in General Discussion)

Hi folks.  I wanted to check back in and let you know the latest.  I did not have a Biopsy today.  Unfortunately with the VA system it can be a lot of misinformation.  I had been told to come in but no one gave me a time so I called in at 7:30 a.m. after some run around I spoke to the Surgeon who said he would have a resident give me a call and try to get me in today... NOthing. 

I asked him about my PET scan and he confirmed that the Lymphnodes in my chest (2) are cancerous and there are other areas that lit up as well but he did not want to tell me over the phone (LIkE IT COULD MAKE A DIFFERENCE).

My main tumor is on the Right Lobe of the liver.

I called MD Anderson but they said they will not take VA Patients which only leaves me with the County Health System and that would be even worse.  I don't know if I can get one of their docts to review my case and offer an opinion or not does anyone here?

Thanks everyone!

Robert

11

(31 replies, posted in General Discussion)

Thank you everyone.  It means a lot to me and it really does help.  It's such a rollercoaster of emotions right now.   I am recieving treatment from the Houston VA Medical center as I live in the Houston area.  I would rather go to MD Anderson but unfortunately I am one of those uninsured types.  I did listen to one of the Anderson docs on here give a lecture on CC in advanced stages and it was very informative.  My PET scan was on Friday at the end of the day.  I was staying in the hospital (had been for all of last week) and they rushed me in to the procedure.  But with the weekend and the Holiday on Monday I have to wait, hopefully something will come today.  Also, I am praying I get my bio today.  They told me that the Cancer board for the hospital meets on Wednesdays and while they did not think they would have all of my results this week they plan on presenting next wednesday so I know the Bio has to be done with time for them to get the results.

I don't want you to get the idea that I don't face this with courage.  I do, but I also read so many negative things about the disease it begins to cloud my mind.  I am so glad there is a resource like this on the net.  Your stories help me "believe". 

Lainy, Bazel, PCL and Peggy I will pray for you and your families.

12

(31 replies, posted in General Discussion)

Hi, my name is Robert and I have been tentativley diagnosed with peripheral interhepatic cholangiocarcinoma and I am still somewhat in shock.  My tumor is very large (14 cm x 10.9 c.m. x 12 c.m.).  I had not had any problems until a blood test a little over a year ago said I had increased liver function.  A follow up 6 months later confirmed this and a battery of tests was conducted to see if I had juandice, HEP etc.  They also did an ultrasound of the liver and found nothing remarkable.  How this thing grew so fast and so large in such a short period of time I will never know.  At 42 I am comfortable with the thought of dying accept for the fact that I have two small children (8, 11) which I can not imagine growing up without me. 

I've done some homework and it appears my TNM stage appears to be T-3 N-1 M-0 do I have hope?  I have a biopsy this week that will hopefully tell the tale for sure but my symptoms do all lineup with those of cholangiocarcinoma and my surgeons are pretty sure.  The question they need to answer is if it is resectable.  Two lymphnodes in my chest appear to be affect (still waiting on PET results for this) does this mean it's getting ready to spread?

Any help or words of encouragement would be greatly apprecitated at this time.