Back from Chicago

[marie3B]

The whole trip could have been avoided.  All they did was get a quick summary of my case from me and give a suggestion for treatment.  Seems that she could have given her opinion on treatment to my onc when the two of them discussed my case.  I am not sure why I had to go there in person just to show her my records which had already been faxed up there.  Can you tell I am tired and grouchy from the long day of riding in the car and sitting in the waiting room?

The onc said that she doesn't want me to have Avastin since my colon already has a lesion coming through it.  The only way she would consider it for me is if I had an ostomy.  She doesn't think I should have surgery at this time.  She will recommend the colon cancer chemo and see if that works.

The PET scan results and the liver biopsy were not there yet.  She said that grade one cancer like mine does not respond to chemo and does not show up in scans very well.  Not even PET scans.  She said there may be alot more cancer in me than the one colon lesion and the tumor by my liver.

Her attitude was more negative than I expected.  She told me if ovca isn't gotten with the first round of chemo then there was no chance of a full response.  It may be true with my type, but I don't agree that is the case with all types of ovca.

My home-town onc gave me much more hope than this one.  She may still want me to have surgery and that is what I think might be best.  I left there today feeling I have been knocked down.  But I will get back up and keep fighting this even though she obviously feels it's not worth my effort.

Thank you all for helping me through all of this.  Love, Marie

[fungirl1011]

Marie, I am so sorry that the trip to Chicago did not go as you planned.  It makes me so mad to get a negative doctor.  I am all for them being honest, but there is ALWAYS hope.  I will continue to keep you in my prayers, as you are never far from my thoughts.  You are a strong woman and I know that you will make the right decision for you (talking about surgery).  Just know that we are all here for you and thinking of you.  Love you, Kasie

[marie3B]

Julie,  Yes. The reason for not letting me try the Avastin is that the ovca has gone through the colon wall already.  It still is an option if they remove the colon section and give me the ostomy.  Not being able to drink cold drinks with the oxiliplatin will be hard, but I can adjust to anything if it gives me even a chance of beating this thing back.

Judy,  Yes it helps when the docs see thing throught the patient's eyes.  The best doc I ever met was on my Grandma's cardiac team.  He would lean over her and stroke her forehead and speak in a soothing voice as she was near the end. His name was Dr. Collad. I will never forget how gentle he was with her.  
Marie

[JC145]

Oh, Marie, I am so sorry for all the run around.  It probably wouldn't have bothered you so much if the bit** had a little more bedside manner.  What are we .. a piece of meat?  One of the MD's I worked for .. a kind of shoot-from-the-hip kind of man, got colon cancer.  He softened up so much after that.  He better understood the fear of blood tests, scan reports, all the things the patients worried about.  He is fine today and has retired (5FU and Leucovorin) .. but still worries even tho he's over 5 years out of chemo.  I don't wish any of the MD's get chemo, but I wish they could see this beast through our eyes.  Good luck with whatever is to come.  God Bless You on this next journey.

Judy C

[westajul]

Good Morning,
I am so sorry that the Doctors was so negative. My chemo regime does also include Oxilaplatin, 5-FU and Leucovorin. So it sounds like you willbe getting 3 out the 4 chemo drugs I am on. The main negative with Oxaliplatin is you can't eat,drink or touch anything cold for up to 7 days. My MDA doctor said 5 days my local onc. says 7 days. When you touch something cold it feels like instant frostbite...burning and painful stinging. If you drink something cool you have to drink slow. I do have a numbing sensation in my fingertip and toes. The body can break down 5-fu pretty quickly so you will most likely have to carry a pump around for 46 hours. I keep my pump in a old big purse...some people use a fanny pack. My Oncologist here tells me that Oxilaplatin is a powerful chemo drug. I am sorry about you not getting avastin. I am not sure why they won't let you have it...maybe because one of the serious side effects is bowel perforation and maybe if the cancer lesions have spread out from the colon..the colon walls have become weakend and this with avastin side effects could be a dangerous combination.

Good luck and I would go with your local. oncologist outlook. Some doctors are just negative. Love, Julie

[TrudieC]

So sorry you were put through this.  You'd think onc's would have some compassion and common sense when dealing with cancer patients.  Hope you come away with a good plan tomorrow.  Hugs, Trudie

[marie3B]

Gail,  I will ask about the Camptosar.   I see my own onc tomorrow.  The doc yesterday was suggesting the 5fu combo & oxiliplatin (spelling?)

Colleen,  I think I will have to have surgery.  My colon is pretty damaged and this tumor near the liver is beginning to bother me.

Sharon,  I agree with you about the billing.  All I did yesterday could have been done in a fax and a phone call.

I will up-date when I know more.  Love, Marie