1

(24 replies, posted in General Discussion)

Hi Kris,

Sorry to see you have been in and out of the hospital but so glad to hear you are out.  Hang in there .

Susie

Oh indeed it did, Gavin.  I had another one today!

So, I am a little early.  My 5 year anniversary will be on 5-5.  I moved my scan up a few weeks because I might take a new job.
But anyway, I was diagnosed with IHCC on 5-5-11, had a resection, R0, chemo and radiation and had my 5 yr scan today.  I had the report released and it is negative for disease as far as I can tell.  I see the onc on wednesday so will review it then.
The bad news is my ca 19-9 went from 11 to 33, which is still normal but concerning to me.  So, this was supposed to be my last scan but we will see what the onc says.
But either way I am thankful for the good report, thankful to God for my life and thankful for all of you who have supported me through the years.
Take care everyone!

Susie

Good to hear.  Especially since I just ate a brownie.  smile

-Susie

I'm a nurse.  I've seen that happen. Glad it's taken care of!

take care,

Susie

6

(15 replies, posted in General Discussion)

Best wishes for a good ct scan, Kris.

Take care,

Susie

7

(19 replies, posted in Introductions!)

Hi Cait,

I haven't logged in in forever but I just happened to and I saw your post.  You are similar to me in many ways.
I was diagnosed at 31 with Intrahepatic CC. about a 5cm mass. I had abdominal pain after eating too much pizza and it sent me to the ER.
I was lucky enough to have surgery right away followed by chemo and radiation.
I just had my 4.5 yr check up with my oncologist on Monday.  I didn't have a scan as I am now on yearly scans and the next one is in May.  I did have my tumor marker checked and it was 11.5, down from 15 which is normal, so I was happy about that.  My last scan at 4 yrs showed no cancer.
It was really tough getting hit with this at such a young age.  I was trying to have kids at the time of diagnosis so I know all about the fertility issues. I did meet with a fertility specialist and chose not to freeze my eggs as I did not want to delay chemo.  Very long story short, but I know I still ovulate despite all my treatment.
I really wish you the best.  Please feel free to read my posts or message me directly with any questions.  You will find a great support system here.

And to the rest of my CC friends...Hello!!!!!!!!!  I've missed you all and hope you are all well and had a fabulous Thanksgiving!  I just got back from the Florida keys.  My sister got married!!

Take care!

Susie

8

(13 replies, posted in Good News / What's Working)

Great Randi!!  Congratulations!!

It is weird, trying to let go of cancer.  I still think about it every day as well but not every second of every day like I used to.  I also don't cry as much.  I think I cried every day for a year when I got diagnosed.

Take care,

Susie

9

(12 replies, posted in Good News / What's Working)

Katrina, it was Gem/Cis and then I took Xeloda with radiation.
What do you mean do many people get help with chemo/radiation?  Like financial assistance?

Take care,

Susie

10

(12 replies, posted in Good News / What's Working)

I was diagnosed in May 2011 with a 5cm intrahepatic CC.  I underwent resection, 6 cycles of chemo and chemo radiation.  This week I had my 4 year post op scan and am excited to say that it was clean.  The ironic part was my ct scan was actually denied by my insurance company saying it was not necessary as they only recommend scanning for 2 yrs for cholangiocardinoma.  So I had to pay out of pocket and am hoping to get reimbursed.  How ridiculous, but I won't complain too hard since it was a clean scan and I know how very fortunate I am to be here today.
I read the board very often but I don't post as often as I used to.
I am doing well.  I am becoming pleasantly plump!  I am about 128lbs compared to the 105lbs I was during treatment. I am very active and feel very healthy.
I will share that in January I was actually pregnant, however I miscarried pretty much right away but it was nice just to be pregnant for a bit at least.
So my oncologist said I will get blood work in 6 months and another scan in 1 yr.  She said I can have kids if I want.
People are probably wondering if I do any alternative treatments.  (I know I also wondered what others were doing)  I take tumeric, fish oil, probiotics and vitamin D.  But other than that I have a very normal diet, meaning today I had pizza and ice cream but yesterday it was a green smoothie.  I try to live a very normal life.
Feel free to ask any questions and thanks for listening as always. I hope and pray you all are well.

Take care,

Susie

Thanks for sharing, Gavin!!

Take care,

Susie

12

(1 replies, posted in Members' Cafe)

That is a crazy picture.  Thanks for sharing!

Susie

13

(349 replies, posted in Introductions!)

Matt,
Best wishes on the upcoming scan.  I think it is very, very normal to get nervous around scan time. I have my next scan in May.  That will be the 4 yr post resection scan for me. 
I still think about CC every single day but not all day every day like I used to.  I still get nervous around testing time and every time I feel anything weird happening in my abdomen.  I am accepting these feelings as the new normal.  I think that is all one can do.
I will be praying for you.

Take care,

Susie

14

(36 replies, posted in General Discussion)

Porter,

I'm so sorry to hear of the uncertainty.  That can be so frustrating.
I don't really know what should be done but I think it sounds like your Dr's have a reasonable plan.  Please keep us posted .

Take care,

Susie

15

(4 replies, posted in New Developments)

I think they would have preferred if I got radiation right after surgery and then got chemo.  But I had already started my chemo before it was recommended I get radiation.  So I did 3 cycles of chemo, radiation, and then the remaining 3 cycles of chemo.
I had no lymph node involvement.  My last MRI was in May and it did not show signs of disease.

take care!

Susie

16

(4 replies, posted in New Developments)

Hi.  I had I resection 3.5 years ago.  I received adjuvant chemo and radiation.
Radiation was recommended for me because I had a very close surgical margin.
However, they wanted to do the radiation soon after surgery.  I was actually started on chemo and I received 3 cycles, then got radiation along with an oral chemo, and then finished the other 3 cycles of my iv chemo.
So, I think they like to perform radiation soon after the surgery.  I'm not sure with her being a year out if they would recommend it but that is always something you can discuss with her Dr's.
I did get 3 opinions on the radiation and that's exactly what I got, 3 very  different opinions.  Some recommend it and some don't.

take care and good luck!

Susie

Congratulations, Lainy!!!  So glad to hear it.

Take care,

Susie

18

(5 replies, posted in General Discussion)

Hi Porter.  I have only ever had one PET. It was right after my surgery. My situation was kind of backwards.  I had surgery first for a tumor that the Dr's did not think was cancerous. Then after surgery when they found it was cancer, I was worked up for a primary. 
How big are the spots?  I would ask if they are big enough to light up on PET. I'm sure if they were concerned about them they would order a biopsy.  But you could ask about that as well.

Take care,

Susie

Great news and thanks for sharing!!

Susie

20

(17 replies, posted in Good News / What's Working)

Congratulations!!!

21

(349 replies, posted in Introductions!)

Congratulations!!

Great news!!

23

(16 replies, posted in Good News / What's Working)

Yay!!!  Great news!

Thanks Lainy!!

25

(5 replies, posted in Announcements)

Well said Marion!!