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initial visit with oncologist

immbeloved's picture
immbeloved
Posts: 37
Joined: Oct 2010

well i am home from vanderbilt after meeting Dr. Emily Chan. she gave me her formula of 4 chemo drugs, one of which is specifically designed for the liver mets. she is going to contact a local group so i can have my treatments done here, also wants me to have a ct scan of liver. Goal is to shrink the 4 tumors to a point where surgery is an option. that is the best case scenario for me. until then it is a cycle of chemo, tests, chemo, tests. i have yet to have a CEA so i have no clue what that is, and at this point not sure i want to know any more answers because they are always bad. i did request and received a liver function test just so i could see if the thing is working properly. sorry to be such a gloomy gus, just need someone in a white coat to smile and tell me some good news for a change.

love to all,

amber

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

amber keep on truckin....there are liver warriors out here...

you are not a gloomy gus...I wonder which drug you will be on

hang on.....it's possible

mags

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Amber,

I did get your PM. Don't apologize for being a "gloomy gus" (hadn't heard that one before :) Everyone is upset when going through this, especially when starting it all out. I totally understand wanting to hear good news from someone in a white coat for a change! I hope and pray that you will soon. Hopefully after starting chemo, your body will respond well and the tumors will start shrinking! Even if you "don't really want to know", make sure they draw a CEA prior to starting the chemo, so that there is a reference point to compare things to later! You won't know for sure for a while if CEA is a good indicator for you or not (it is for some, but not for others). But, you won't even be able to find out if it isn't drawn now to compare to later!
My first oncologist never even mentioned CEA- that was before I was on the board & I didn't know any better to ask for it to be done. I wish now (esp since CEA is such a stronbg indicator for me) that I knew what mine was when I was first diagnosed and what it did as I started getting Folfox chemo. I didn't get it drawn until I had my liver resection, 9 months after my diagnosis. (one of the contributing reasons why I changed oncologist).
Anyhow- as much as it's temnpting, do not bury your head in the sand- find out all the test results and make sure everything is done that should be done.

So far as your chances of becoming operable, I went from not being a surgical candidate to being able to have the surgery... I started with 12 visible tumors in my liver and six months of chemo took it to just 3 visible tumors left in the liver and they also no longer were lighting up on the PET scan. I just wish I could become either a surgical or radiation candidate with my lungs! Still working on that.
I think you will be okay but, honestly, I believe so much of it has to do with your attitude. You can't give up and give in- you've got to fight!
I will be pulling for you and praying for you.
Anytime you feel discouraged, you know where to come- in no way will the people on this board get tired of "hearing you whine". We've all been there! I go from being supportive to others, to sometimes really needing a place to vent and get support from others. That's why we're here, my dear!!

Hugs,
Lisa

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

Hoping that the treatment they give you works so that you can get your surgery. When you have chemo, there are always many tests involved with that. They have to monitor your every symptom too. Be careful of taking any supplements too as they can interfere with your chemo. Always ask you oncologist if you can take something. Good luck.

Kim

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Congratulations on making it through your initial visit. It can be so overwhelming and hard to find a ray of sunshine when there is so much to process.

It's good that you now have your plan together. Knowing your CEA right now may or may not help. As others have said, you can't really tell how much of a help it will be until you get further along. The doctors don't go by what the CEA number is but by how it lowers or rises in response to treatment/surgery. But, it is good to have an initial number as a baseline so that it can be monitored for any trends and can let them know if it is a good indicator for you.

Tests between treatments are normal and ongoing. So, don't worry about that. They need to see that your numbers WBC, PLT, RBC, stay in a good range because the chemo can knock them down.

I'm happy that you are able to get your treatments done locally. That is another positive note!

Hang in there. I know it can be lot thrown at you all at once. You will be able to start sorting things out before you know it. And everyone here is happy to answer any questions to help you do that.

immbeloved's picture
immbeloved
Posts: 37
Joined: Oct 2010

the oncologist today did mention that she could do a cea but that my local oncologist would just do another because results ranges are different from lab to lab so i guess this is a finicky test. has anyone tried or heard of "essiac tea"?

thanks for all the encouragement.

amber

AnneCan
Posts: 3692
Joined: Oct 2009

I bet you are happy to have that visit behind you, + now you have a plan in place to show those cancer cells who is boss! It is nice you can have your treatment locally + avoid that long drive. Chemo days can be long enough as it is. Good luck, + I hope you have a wonderful weekend with your family.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Amber,

Praying you get a good plan and excellent results.

*Hugs*

Gail

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

What were the 4 chemo drugs?
CEA was a good clue as to how I was doing, I started out with over 2154 I believe, down to 5.8 as of last CEA. Now operable, before was told would never see an operating table. (when they tell you the bad news, just smile and nod and then think "Like Hell", which is what I did). The good news will come, it just takes a few months.
Although I would question as to why just CT Scan of liver, every time, I got a CT scan from neck to knees, when it's in your colon, you want pics now of that, so to compare with CT Scan that is later to come.
Get the goals.
Winter Marie

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Amber,
Come on this board any time in any mood you are in. Thank goodness we can all just be ourselves here. The beginning of this journey was the hardest for us. The more we learned, mostly from people on this board, the less fear we had. Good news that your is planning on getting you ready to have a resection.
We're thinking of you.

Aloha,
Kathleen
(I love your picture, where you in Hawaii?)

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Look at those teeny tiny waves. That's bound to be on the East coast. Or perhaps the gulf coast. I bet it's the gulf.
Hope your class is doing well. Give my best to Dick.
Roger

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Amber - This sounds like a good plan. I'm glad you can have treatment close to home. What drugs will you take.
It's a beautiful thing when you get the white coats smilin'.
Take care,
Roger

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

That will make for a lot better scenario for all involved.....and save a ton of gas and food money......so, you can buy sis some wine with the savings.......LOL.......it will be ok , you just have to be very, very patient.....Love to all of you, Clift

WhatsA_Mom2Do's picture
WhatsA_Mom2Do
Posts: 46
Joined: Sep 2010

Hi Amber,

Feel free to vent away. Your moods are just that...YOUR moods. You're entitled to feel whatever you feel in the moment. As I say in the title, some Oncologist will not smile not matter what. It's just not their style or "bedside manner".

When I felt we had nothing to smile about, I would come on this board and/or Colon Club and put "survivors" in the search and read all the the wonderful stories of survival. When my son's cancer progressed after his initial treatment, I entered "lymph node mets" into the search and saw great stories of people who were doing well in spite of..... Those were the things that gave me hope, and it seems that is what you need right now...hope!

I'd lurked here since August 2009 and just recently joined. It's a great place for support and encouragement. It's sorta like a family....with that being said it's a great place to release your frustrations without fear of being labled a cry baby, complainer, etc. People here understand....and that lifts a heavy burden.

I second the suggestions to make sure your CEA is drawn as it may or may not be a good marker of tumor burden for your cancer. If you don't want to know the numbers, or any information for that matter, just let the Oncologist know ahead of time. There are times that my son's Onc will order a CEA and I tell him "I don't want to know right now...when I want to know the value, I'll call you". Sometimes it's just too much to bear.

Take baby steps and don't overwhelm yourself. If possible, take someone with you to your appointments, or a pen and pad, or a tape recorder because having cancer and learning the lingo can be like learning a foreign language.

We're here for you. Keep your eye on the prize.

Dee

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