? I’ve never seen this asked on this board ???

[lainy]

PattiB we will make it work!! IKEA here we come.

[pattib]

I’m glad I have good news to report! Chatting with Lainy about meeting up in Phoenix next weekend. I hope it works out!

Hope things are going well for you and your husband and family.
Patti

[leeann]

I had lots of back pains and uncomfortable to wear bra 3 to 4 months before I was diagnosed with cc. I thought I was putting on weight so got myself new bra and daily massage from my daughter(she’s only 9 but strong).
Other than that I had no clue until september, I had bad itching everywhere. About 2 weeks later I started turning yellow. So I’m not even sure how long l had and didn’t ask. I only needed to know how to treat this. Oct and Nov was busy with tests, stents,CT,MRI, and finally surgery.
I guess now I need to pay attention to any unusal signs…..

[marions]

Carlyn…if the doctor performed a liver function test, which I believe he did then he watched for alkaline phosphatase or bilirubin levels. I assume.
Doctors don’t test for this cancer simply because; in comparison to other cancers, it occurs rarely. Some physicians never come in contact with a CC patient in their entire time of practicing medicine.
Hugs and love,
Marion

[tiff1496]

No clue.
I went to the ER a few months before we learned it was cancer. The ER doctor told me “no need for a CT scan, we give more people cancer with CT scans than find cancer.” He said it was a UTI. Now I know, it was cancer.

HELLO doc! My pains where upper abdominal….and I even told him I had lost weight and not been eating good. This was about 4 months before we learned it is cancer.

[carlynrb]

My Mom was have her blood draw every 3 months by her primary care doctor. The doctor was taking a lab draw to check and make sure the liver is tolerating the mediation (Morphine and Norco following back surgery) she was taking, would lab test reveal/show any signs regarding CC? Her doctor was doing this for the last 2+ years.

Blessings on your journey,
Carlyn

[pattib]

That’s the stuff I don’t know yet. I plan on talking to her this week and urge her to get her ducks in order. I’ll let you know – the delay is that her friends aren’t there that weekend, but we can stay at their place, vs. finding out when they ARE going to be there and planning something with them – evidently her pals are in flux as well right now, but she’s going to be with me for 3 weeks, so at SOME point I oughta know something! (sisters…. sheesh!)
So keep it in pencil for now :rolleyes:
Looking forward to it!
Patti

[lainy]

PURRFECT! I wrote your name in with INK! the 18th. What part of town will you be in? I am actually in Sun Lakes which is 5 miles South of Chandler. We will set a time and placce. I am so excited. Let’s see you will be the 5th person I am meeting from here. LOVE IT!

[marions]

Lainy…it is the other way around: I want to be like you. Have fun at the super bowl party; sure wish I could taste your hors d’oeuvres, sounds yummy.
Hugs and love,
Marion

[pattib]

Actually, my sister – a breast cancer survivor (she was diagnosed just 9 months after I was diagnosed!) is coming to visit at the end of the month.
We are currently planning to stay that Friday night/Saturday in Phoenix at one of her friend’s place. Sooooo.. maybe we can “do lunch” that Saturday – I think it’s the 18th. Possible???

Let’s keep in touch, I think it would be terrific! Is that day any good for you?

Janel should be letting me know her specific plans shortly, but she IS flying into Phoenix, so I will be in the “neighborhood” as they say

[lainy]

Thanks, Marion…with you as my Manager I can’t go wrong!!! I want to be just like you when I grow up. LOL Love you.
PattiB I would be most happy to meet with you half way for lunch one day! What do you think?

[marions]

Patty….what a wonderful surprise it is to hear from you. Add to that the good news of the five year mark of living with CC – you have made our day.
You should try to meet up with Lainy, if you can. Everyone should be entitled to personal dose of Lainy – she is very special.
Hugs and love,
Marion

[pattib]

Hey Lainy! Good to hear from you!

I keep hoping some event will happen either here in Tucson or in Phoenix. I’d sure love to meet you and the others in this group. Thanks for the congrats! I do feel lucky. I must say, I got some amazingly excellent counseling about 2 years ago that really helped me. I now feel I’m back on track and living a real life. I encourage anyone who can to get support wherever they can.

All the best! Please keep up the excellent work.
Patti

[lainy]

Dear PattiB, I am so happy to read your post today. Congratulations!!!
Also we are neighbors, I am in Phoenix! Keep up all the good work and we love hearing from you, especially good news!

[pattib]

Hello there!
It’s been ages since I’ve logged in here – thanks for the email about February.

A comment to Patty in IL: I was diagnosed Aug 1, 2007 so am about to hit the 5 year marker this summer. Like you, I was not very symptomatic – at least as far as I knew! They found it during a CT for my lungs – another problem entirely as it turned out.

Anyway, as Marion mentioned, you could continue to be “stable”. I apparently am, and I’ve had no growth or shrinkage since the beginning despite all sorts of chemo’s, a second biopsy, genetic analysis, you name it! Nothing seemed to “help” but nothing got much worse either – it’s VERY slow growing. I posted about my treatments here until they stopped.

A year or so ago they stopped all treatments and by this coming July it will be a year and a half. I sorta feel like I have my life back! I have somehow gotten to a place where I don’t think about it regularly anymore – in fact I thought I’d already hit the 5 year marker Last summer!!!

So, this is my latest update since I first logged in here in Feb 2008. I’m doing fine except for what are probably after-effects of chemo – bad teeth mostly. I sure hope it brings some sunny light to others out there.

All of the BEST for everyone, Love and many thanks to this wonderful place.
Patti
Oh I forgot the point about onset!!! Duhhh… They told me when they decided it was cholangiocarcinoma that I’d probably had it for several years. I can’t relate that to anything special in my life.

[Author]

Posts