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working on my second opinions

optimist
Posts: 51
Joined: Oct 2005

I have been busy lately taking new PET and CAT scans and working on second opinions. I have been on Erbitux and CPT11 for the past ten weeks and Avastin and CPT11 for twelve weeks before that. Three weeks ago, my oncologist freaked when my CEA went up to 49. She said there is nothing more she can do for me and its not worth taking any more CEAs or tests. I insisted that we go for more tests and consult with other drs.
My scans show that my liver lesions have increased in size and now number six. They are still relatively small with the largest being 4.7 cms.I still have nodes in my peritoneum, but they are stable. My CEA is now down to 18.
My first second opinion was very helpful. This oncologist said that she believes in attacking the liver as aggressively as possible. She was going to show my scans to 'aggressive' liver surgeons that she knows and investigate focal radiation for the liver.
It also seems to me that Camptosar is not working. I have been on it for six months straight. Six months ago, I had no liver lesions. Now, there are six that continue to grow. She suggested that I try Xelox. I don't know how I will tolerate Xeloda because I had gotten massive migraines that landed me in the hospital when I was on 5FU. However,I know that I will have to try Xeloda and hope for the best.
This oncologist was actually a human being. She spoke to me very frankly, giving me a lot of information. She actually looked me in the eye and acted as if I was a person instead of a 'dying freak.' She said that I am currently at a short window of time where I can still tolerate strong treatment. We need to take advantage of this, because if we wait longer and the disease progresses, I may not be able to handle aggressive treatment.
I am going for another second opinion today and I am waiting for this oncologist to get back to me about possible liver surgery and/or radiation.
Thanks for listening. I'll keep you posted.

mindy10
Posts: 183
Joined: Jul 2005

Hi, I will say a prayer for you. I hope the second opinion gives you more hope. Im sure something out there will work for you. Keep your spirits up!!

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

I'm so glad to hear that things went well with you second opinion doctor and that she is seeking more options for you. Hopefully, the next doctor will also have a plan of attack that will be successful. I pray that Xeloda will not have intolerable side effects. I will keep you in my heart and prayers.

Let us know how today goes.

Hugs,

Kay

foxy
Posts: 190
Joined: Oct 2005

You are always in my prayers, love Virginia.

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

So glad you got the second opinion/s. Hope the next docs are as thoughtful and have good options.
An oncologist here in Boston(Groopman) wrote a book entitled The Anatomy of Hope, which I think should be required reading for every oncologist. He contends that a doctor's first responsibility is to work with the patient and instill a sense of being in this together, no matter what the battle or course ahead. I am now on my third, and best yet, oncologist. I left my first one due to his tendancy to minimize any side effects, and call my chemo "lite". My second onc relocated, and while I liked him, his replacement is better yet in terms of sensitivity and communication.
Best of luck with the Xeloda; keep us posted. Judy

jana11
Posts: 708
Joined: May 2004

I am so happy you found a person who happens to be an oncologist. Good luck with all the coming treatments.

Have a wonderful holiday season.. you deserve only the best. keep us posted.

jana

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