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C Dixon Update on 6 weeks of Radiation Therapy and Drama

C Dixon
Posts: 202
Joined: Jan 2010

I hope y'all don't mind if I just copy and paste the update I put on my page. It is a lot to type again.

9/9/10: I had a successful liver resection and am recovering nicely. One of the lesions was close to the blood supply for the left lobe, so the surgeon could only get so close. He sent a biopsy of the remaining tissue to pathology and they found microscopic CRC cells. So, now I will be doing 5 1/2 weeks of radiation at Duke to finish them off and then follow up with some form of chemo.

Feeling good other than normal post-op discomfort. Went to the gym today and walked 30 minutes on the treadmill.....not running but moving. I'm grateful to the Lord leading me through this and all the opportunities He has provided for me.

10/11/10: 2 weeks into the radiotherapy, I found out that my CEA had skyrocketed to 52. No one told me though. I had to find out on the Internet. The PA that I was seeing handed me two sheets for my blood work and not three, so I just assumed they didn't do a CEA. The next week, I received the email that lab reports were posted to the internet for me and that's when I found out about the CEA. I had told everyone that I would be fine in Durham by myself because everything was going so well, so I was alone. I took my ativan and read my Bible a lot!

The next week when I was scheduled to see the PA again, the doc was there too. They knew she had messed up and all he could say was that it was an oversight. And really that is what it was. I've been in this long enough to know it doesn't really matter how you get the news when it's bad.....it's still bad. However, throughout the rest of my time there, I never say the PA again. Only the doc came into the room. I suppose she got in trouble. I liked her but the oversight was very painful for me. Two weeks later it is down to 40.1 but still high enough to require a PET.

10/20/10: 3 weeks into the radiotherapy and the results of the PET are that a lymph node we have been watching is larger but not as bright and three new lesions in my left lobe, well my only lobe.

Back to the team I go! We will probably finish the radiotherapy or at least 25 out of 28 sessions to take care of the margin from the surgery. Options are surgery, radiation and chemo. We'll just have to see what the team says. The Radiation Oncologist did say that the question of another liver resection was not unreasonable but we have to see what the surgeon says.

11/13/10: I finished the radiation a week ago and had an MRI to clarify the PET Scan. Results say two tumors in liver (1cm and 1.3cm) and cancer on right ovary. The oncologist at Duke said he would call me after the results of the MRI were in but the Radiation Oncologist called me that day. Dr. Czito is wonderful but he is not the quarterback. The Oncologist is. It's his job to consult with surgeons and RFA people and what not. He said he would call me this past Monday with his plan. I didn't hear from him. I know they are busy and I called Thursday and he still didn't call. I called Dr. Czito about my cramping and he DID call back. I told him I hadn't heard from the onc and he told me that if I hadn't heard from him by noon the next day to call him.

However, I saw my local oncologist here as this first week home the side effects that I didn't have the whole 6 week time period roared their ugly heads. I was mainly concerned about cramping and my belly was distended. I got into my doc here and he said what I didn't want to hear: ascites. So after many hugs, he sent me off to the hospital to get drained. 3 1/2 liters later. It was easier than going to the dentist. I left the hospital and had lunch with my husband, picked my kids up from school, ran errand, picked up my swimmer from practice and had a nice evening at home with a fire. I suppose the fluid is coming from what is on the ovary. It will probably come back until we deal with the causative problem.

I told my doc here about the problems with the onc at Duke and he said he would be right on that. So I will let him handle that. I am supposed to see him Friday and I hope the plan will have been communicated by then. I really don't want to talk to the onc at Duke. He is supposed to be the best and I suppose he is but I am pretty disappointed with these events.

Haviing said all that, I believe the Lord has a plan. I am enjoying a lazy Saturday and getting my house back under control after being gone so long.

My Gamecocks play the Florida Gators today.......can't decide if I can bear watching:)

Catherine

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Catherine

There will be much to consider once you get all of your "docs" in a row:)

You've been through quite a bit and are doing so well. The fluid drain sounds like it will be a pai until it is addressed, now you know what to look for.

If you watched your team play 'Bama, you can go and catch 'Gators:)

Have a simple and peaceful day!

-Craig

C Dixon
Posts: 202
Joined: Jan 2010

How is your radiation coming?

I was at the game; it was thrilling. Then I watched the Kentucky game...........oh, to be a Gamecock. I tell my children, "Sorry, you are born in to it." hahahaha We did win the College World Series though and that was fabulous because my family really is more into the baseball.

Catherine

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Catherine

I start my 5th week of six on Monday. Fatigue has set in, my skin is holding up ok in the treatment area so far. The pump makes me a little sick and is a drag to carry around. Hard to believe I've had a constant chemo drip for a solid month, no breaks whatsoever...just change the needle, insert the new one and away we go.

I finish up this portion of my treatment just after Thanksgiving on the 30th. I get an 8-day break and then we start back in on the Folfiri for 10 more treatments, so I've still got a long way to go.

I'm tired, but trying to stay mentally and physically strong...this is a big battle for me at this point, and I must continue to fight hard or it could mean a different outcome than the one, I'm hoping for.

Obviously, I'd like cure, but would take an "extension" if push comes to shove.

Thanks for asking.

And yeah, South Carolina seems to have it goin' on this year - enjoy your game:)

-Craig

C Dixon
Posts: 202
Joined: Jan 2010

I guess we do have something going on! Diversions are welcome!

Take Care,

Catherine

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

You have been through so much. Can't blame you for being disappointed in what happened with the doctors. Good luck with your upcoming doctor's appointment.

Kim

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

You have been through the mill lately. I sure hope that they take care of the fluid build up. Hoping all goes well on Friday.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

fight ,that's the way to win .
Just a big hug!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I am so sorry to hear the hard news you are dealing with. That really had to suck to be alone when you go the news, and to have to get it by yourself checking the internet rather than being delivered by the PA. It sounds like the doc gave her the talking to she needed and you won't have to worry about her mistakes in the future. I had a recurrence on my ovary back in 2006 and it did weep alot. I had to get fluid drained every week, got about 4L every time. It's certainly doable. Keep strong and this too shall pass.
mary

C Dixon
Posts: 202
Joined: Jan 2010

This is very encouraging to me.

Catherine

AnneCan
Posts: 3692
Joined: Oct 2009

You have been through a lot! I hope things start to get easier soon for you. Sorry you found out about your CEA that way.

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

I'm sorry about all the mixups. I'm glad your oncologist is going to get right on that.

*hugs*
Gail

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

Does this mean that the radiation did not work?

I'm not surprised that you were able to do so much after being drained of 3 1/2 liters. You've always been tough like that. Very inspiring.

Last night a bunch of chickens completely destroyed a bunch of alligators, and perhaps they will prevail against some tigers as well. I don't know if they can, but I know we can prevail. Sometimes even blue devils make mistakes. Sorry you have to deal with that.

Take care - Roger

C Dixon
Posts: 202
Joined: Jan 2010

The radiation was strictly for the margins from the resection that tested positive for microscopic disease. The two tumors are new in the left or only lobe of my liver.

I'm sorry about the folfiri news. Will you go back to oxi? Have you tried the xeloda?

I identified totally with your Disney trip. I didn't go with cancer (or at least I didn't know) but it is a complete escape from reality. I got on that Peter Pan ride and never wanted to get off.

Fondly,

Catherine

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