1

(12 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

2

(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

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

5

(1 replies, posted in Members' Cafe)

That is a crazy picture.  Thanks for sharing!

Susie

6

(226 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

7

(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

8

(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

9

(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

11

(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

13

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

Congratulations!!!

14

(226 replies, posted in Introductions!)

Congratulations!!

Great news!!

16

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

Yay!!!  Great news!

Thanks Lainy!!

18

(5 replies, posted in Announcements)

Well said Marion!!

Porter,

Congrats on your last treatment!

I have had very similar experiences to you.  My liver hurt a lot during chemo.  I was always afraid it was a recurrence.  It never was and the pain went away after treatment was over.  Every now and again I still get a random pain in my abdomen.  Nothing has ever showed up on CT but it is still enough to cause me to worry.
I've debated since diagnosis going on an anti depressant but I never have. My reason is that I just don't think a little pill is going to make me forget I had cancer and all that it's taken from me.  Just my thoughts.  I know plenty of people use them and find them beneficial.
I did go to the OHSU young adult cancer support group and sometimes I still consider going there. It is just a pain for me to get there on time with traffic.
When I went, I had mixed feelings about it. It is a support group for cancer "survivor's"  but I'm not really sure what that means.  A lot of the members were stage IV undergoing very aggressive treatment for various cancers.  I don't think there was much hope for them being cured.  For me, it was difficult going there being cancer free and being around so many others who were not and probably never will be.  It's like you feel bad complaining.  That's how I felt anyway.


  We should meet up for coffee sometime!  We're pretty close to each other.

Take care,

Susie

Yay!!!!  Great news!

Glad you are home and cancer free!!  Sorry to hear you had to go through so much.

take care,

Susie

Porter I asked our onc the same thing about the aspirin.  She said it's only been proven for colon cancer.
I had also discussed maybe getting pregnant so for that reason she said no to the aspirin.

I have a small ulcer in my duodenum from radiation.  I have no symptoms and only know it is there because I was scoped.  So for that reason, I am thinking no aspirin for me. 

Take care,

Susie

http://health.yahoo.net/news/s/hsn/one- … -treatment

24

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

BTW, is the research study on here asking for participants real or is it spam?

25

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

I saw the oncologist. Not much to report, visits are pretty short when you are doing well.  I get blood work at 6 month and ct chest/abd/pelvis in one year.
I asked about my prognosis at this point and she agreed it gets better as time goes on.  I believe she said 75% recur in the first 2 years.  I think Mayo told me 90-95% recur in the first 2 -2 1/2 years.
She said I can have kids if I chose to do so, so we'll see.  It's a big decision.  I did meet with high risk OB about  6 months ago and he said I am not that high risk.  He called me medium risk.  Said my main concerns would be preeclampsia and growth restriction.  Also talked about the possibility for issues if I need a csection due to my abdominal surgeries.

I am so thankful for my 3 years of life. I am now 34 years old.  Any questions, please feel free to ask.

Thanks,

Susie