Thanks MLepp! That expiration date comment made my entire day! A laugh to kick start my morning was really great! Thank you!

~Stan

mlepp0416 wrote:

Scarman2008:
I agree with Lainy!  Tom's CA 19 is 336, down from 466 three weeks ago and his bilirubin level is 22.7 down from 24.7 three weeks ago.  He is currently undergoing radiation for her reoccurance of a CC tumor 20 months after a left liver lobe resection.

Never give up!  Keep a positive attitude!  No one has an expiration date stamped on the bottom of their feet or on their butt!

This wonderful site has given me a lot of information and helps me to maintain a positive attitude - even on those days when being a caretaker to a very sick husband gets me a bit down. 

Prayers from Wisconsin coming your way.

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Ouch!

Got the news on my marker today. Quite honestly, it bites.
When I was diagnosed, I was only at 350 something. Then from 93 in December to 519 on Monday.

*sigh*

In the words of Han Solo, "I've got a bad feeling about this."

Ah! I've met with Dr. Fisher before, and I am considering attempting to get on his list of patients again.

I did receive a phone call from my surgeon's office at Stanford. He is the one who suggested the biopsy to my local oncologist. The local oncologist ordered the biopsy. My surgeon's staff member indicated that normally when two physicians discuss and decide on a treatment or test, the physician coordinating the tests would then phone the patient. My oncologist missed that.

Stanford staff indicate that a biopsy of the lung isn't practical, that because the left lung rides on top of the liver, and near where the cut was made for the resection, that a biopsy of the area that also showed PET positive will determine if we're still looking at CC or if another cancer has started.

Wow... that was a run on sentence...

So now I have some information and I don't feel like I'm in limbo so badly. I am taking my little sister and my mom (two scrappy broads) to my next appointment with the oncologist on Monday. Then I'll be letting the doctor know that he's going to have to make sure that I'm in the loop when it comes to my care. Also, if I find that he is still giving me a feeling of disinterest, I'm going to start shopping for a new oncologist.

marions wrote:

Stan,
I am wondering:  The oncologist who did not identify your PET scan as positive, is he the same physician, who ordered a biopsy? 
Is the biopsy to determine metastases of Cholangiocarcinoma or, is there concern that it may be a secondary cancer?
Also, how many CC patients has this oncologist treated and how have they faired.  I think that this is a very important question to ask.  I realize that you may not have many oncologists to draw from living in Chico but there must be at least one other with whom you could consult. 
Also, your records are at Stanford already.  Have you thought of consulting with Dr. George Fisher?    Dr. Fisher has extensive experience with Cholangicocarcinoma patients. 
Just in case, here is his info:

300 Pasteur Drive
Stanford, CA 94305
(650) 498-5710
Best wishes coming your way,
Marion

Ok gang, I need some help brainstorming some questions that I should ask my oncologist on Monday the 25th if January.

First of all, I was diagnosed in Mar of last year. Had a liver resection, my gall bladder removed, part of my bile duct and a lymph node. I followed that up with Gemzar.

During my last month of Gemzar, my CA 19-9 marker began climbing. I went from 16 on two tests to 50 something the next month to 93 the next month. In December we did a PET/CT scan and my oncologist said that I was good to go, that there was no positive in the PET and that something else could be causing the marker to climb.

That brings me to January. Last week I had a follow up CT scan and a meeting with my surgeon at Stanford Medical Center. I also presented my PET/CT scan from December. When I got to see the surgeon, he arrived with the bad news that I now how 2 spots on my lung that are a bit smaller than a pea and a spot near the lymph node area around my liver. He indicates that the lung spots are cancer and that they were PET positive on my December scan.

Now my oncologist wants me to do a CT Guided biopsy using fine needle aspiration on the porta hepatis.

This oncologist replaced my first MD who left to Washington. He seems to be disinterested at best when it comes to my condition and the treatment... and now it appears he wants to do tests that I'm not so sure I wish to do again unless he has a really valid reason. I mean... I have cancer already... do I really need to go through another painful biopsy?

So, for your help in this...

What questions should I now be asking? Some that I have on my notepad already are...

1) Why the biopsy?
2) What is our plan of attack? Chemo, Radiation?

Any others? Your help would be greatly appreciated on this.

Thanks bunches,
Stan

5

(1 replies, posted in Insurance)

Good Morning Irene,

During my 6 month waiting period, I was getting California State Disability. My "claim" on State Disability ran out 2 weeks before SSDI started.

Hope that helps,

Stan

6

(0 replies, posted in Websites)

I just stumbled on this article, and it really made me feel like my surgery was a cake walk in comparison.

http://www.nytimes.com/2009/12/15/health/15surg.html

~Stan

7

(8 replies, posted in Introductions!)

I think I may be able to answer at least one of these questions, though you should always keep in mind that your actual mileage may vary and all people will have different results based on their attitude and overall health.

I just had my resection in June of this year (2009). They took 40% of my liver, my gall bladder, the bile ducts and one lymph node. Due to the location of a tumor on my liver that was close to critical arteries/veins they had to due an incision from the tip of my sternum to my belly button, they were unable to perform the process orthoscopically (sorry I can't spell). I spent 5 days at Stanford Medical Center in Palo Alto California for this procedure.

Day 1 I spent mashing the green button for pain meds.
Day 2 I began walking laps in the hospital toting two IV cart thingys.
Day 3 I was walking multiple laps with one IV cart.
By day 5, I was still doped up, but moving very well under my own power.

My surgeon had indicated that I would be in great shape in 6 weeks.

It took me one week at home to be able to sleep through the night. I had a reaction to my pain med that made things really rough the first week home. Once I quit the oxicodone (night mares big time), I was an overnight success story.

It was about 6 to 7 weeks later that I was able to lift laundry, ride a bicycle, get up from the couch without groaning and even got my driving privileges back. It has been 6 months now, and I still get a gentle reminder every now and then that I had major surgery a very short time ago.


gtm2009 wrote:

My wife was diagnosed with cholangiocarcinoma last Friday.  We are in the process of talking to oncologists at Dekalb Medical Center and at Emory Hospital to determine the next step.   

Here are some questions we have so far:
1) Assuming a resection is possible in her case, how long does it take to "recover" from the surgery.  (We're waiting on an MRI/MRA appointment).
2) Is resection really a "cure" since I've read it can reoccur after the liver regenerates <- That's amazing, and apparently it regenerates quickly
3) I am leaning towards the facility at Emory for her since it is a National Cancer Institute Designated Cancer Center.     Has anyone else had any experience with the doctors and surgeons at Emory?
4) If resection is a "cure" why do people have radiation/chemo done after surgery?
5) We were told that radiation was not an option because of the possible damage to the healthy part of the liver.   However I read that other people have had radiation treatments for this cancer.   What's the real story?

8

(6 replies, posted in Thought for the Day)

Cool is when you come home early from work because you allowed your brain to "tail spin" and got yourself all blue in the gills during a "pity party" only to find your niece put a photo on her Facebook of her and her brother wearing the cool CC Foundation bracelets you sent them.

Sorry, that was one BIG long run on sentence, but I just had to share smile

9

(6 replies, posted in Chemotherapy)

devoncat wrote:

Stan,
When I was not handling xeloda well, my landlord (a surgeon) was like GREAT. The chemos killing something! So there you go...

Kris

That is a terrific way to look at it for sure Kris. Thanks smile

I had some thinning on my chest, back and legs. (on Gemzar)

My head held its hair (so far),

11

(6 replies, posted in Chemotherapy)

I phoned my oncologist today, and they suggested that I get some Benadryl cream. I picked that up and will give it a go this evening for the rash. For the "icky" feeling, I started feeling really decent by the end of the day but the oncologist staff did indicate that I can come by for a visit if "icky" sticks around past tomorrow.

Thanks everyone!

12

(6 replies, posted in Chemotherapy)

Hello everybody!

I just finished my fourth month of Gemzar last Friday. It seems that every visit provides me an opportunity to experience a new side effect.

This week was tough. Even with Zofran I thought I was going to hurl before I even finished the infusion of Gemzar. Friday evening and Saturday were the typical "icky" feeling. Sunday though... holy smoke. Super icky! I made home made chicken soup for dinner. My girl friend said it was very tasty. I couldn't tell, I only had about two spoon fulls of it. I even had a light fever of 100.9.

A terrific rash developed on my belly and thighs. A different rash from the acne type of rash I normally break out in. So, today there will be a call to the oncologist.

Yesterday I stayed home from work because I was just feeling rotten.

Today I feel much better. The rash is still there. sad I am going back to work and hopefully I'll make the entire day without hitting a fatigue wall.

This is the longest "icky" session that I've had to date. A friend indicates that chemo is cumulative, and that I will be feeling more and more side effects over the next two months. Oh joy!

The plus here to note, is that icky to me is a sign that the chemo is working.

Thanks for reading my little update smile

~Stan

13

(16 replies, posted in General Discussion)

Dear Kris,

I've only been here a short time, but from the messages I've read... I feel as though I know you.

I am grasping at what I might say that would make you feel a bit better today, and I'm coming up short. I guess the best that I can say right now is that you are in my thoughts and I hope that strength and courage makes it your way.

All my best,
Stan

That is just terrific news! Awesome!

15

(186 replies, posted in Hospitals)

I was seeing Dr. John Keech as my oncologist here in Chico. He has relocated to Seattle. Terrific physician! I'm now seeing Dr. John Hayward.

My surgeon is Dr. Brendan Vissar (as well as the student community) at Stanford Medical Center.

16

(5 replies, posted in Introductions!)

Lalupes wrote:

Hello Scarman - & a big welcome from me, too.  I'm glad things are going well & am pleased the Gemzar's tolerable (my sister's due to start on it next week, too, so thanks for the tips to combat any queasiness.)

All the best  for your continued good progress.

Julia

Just to add a little bit. They give me Zofran right before the Gemzar. That helps with the nausea the day of chemo. I also have Zofran in pill form to take when I need it, but I do find that good old ginger ale does it for me. There is still the feeling like... um... well.. if you ever drank too much of a certain alcohol... like rum... and ever since you get a funny feeling in your throat when you smell rum... that's what the gemzar is like for me for about two days.

I'm sure your sister will do terrific with the Gemzar,

~Stan

A terrific message to share, thank you so much smile

18

(5 replies, posted in Introductions!)

Gemzar isn't too horrible. It isn't a cake-walk and does have some side effects, but I'm finding it pretty tolerable. For me there is some fatigue, and some VERY mild hair loss. I'm queasy for a day or two. Ginger Ale and ginger snaps seem to work for that.

19

(5 replies, posted in Introductions!)

I've been walking this little "journey" now since March. My condition was discovered by accident while looking into another issue I was experiencing. It seems my ultrasound operator found a walnut sized tumor on my liver.

Since then, I've had surgery to remove 40% of my liver, my gall bladder, the bile duct and on lymph node.

I'm about 1/2 way through my chemo treament (Gemzar) and so far things are looking pretty swell.