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

[Tybear]

Hey Marie...
Don't you absolutley HATE it when doctor's waste your time? I can't tell you how many times I've made my way to Toronto for appointments only to have them tell me something they could have over the phone. Not to mention the cost involved - two to three hour drive, $20 for parking, half a tank of gas and then your exhausted when you get home. It drives me insane...
I'm sorry you aren't able to have the Avastin. Although I didn't have a response to it the second time I did it, my tumors shrunk quite a bit the first time and have remained stable since then. I too, have a slow growing cancer and although it sounds ideal, it doesn't seem to be - all those chemo's out there, my doc's pretty much told me they won't work. What does that leave us with? I feel like a guinea pig some times...I might as well spin a wheel to see what comes next because my doc's sure don't know what to do.
I hope that colon cancer combo helps you - I've heard of those drugs before. I'll be anxiously waiting because maybe that could be something I could try in the future should my cancer become really active again.
Sorry again you had a bad trip!
Becky

[JC145]

Wow .. lots has happened and it's much better news.  I have the regular port in my upper chest and it is great for chemo .. much better than trying to hit my veins.  The port you are getting sounds marvelous and when/if this one has problems, I will ask for the "super" port.

I am currently on carbo/taxotere.  It's not too bad so far.  Nausea/exhaustion hits Day 4 post chemo and nausea meds have kept that part under control.  After a few really, really tired days, the exhaustion gradually leaves.  All in all, side effects are manageable.  I've only had 2 rounds.

Good luck, Marie.  I am so happy you have a good doctor who is willing to fight as hard as you are.

Keep us posted and God Bless,

Judy

[butterflytc]

I am so glad to hear a plan is now in place, sometimes the testing and waiting is even harder on us then doctors even realize. At least chemo is a fight plan. I will be keeping you in my prayers Marie, and hoping all goes well for you.I do not have a power port, I have the regular port in for the last 4 yrs, and have never had a problem yet with mine. It is so much easier for me, then accessing my wicked veins.
All the best,
Love
butterflytc

[marie3B]

Thanks.  I will look it up. I hope it is not uncomfortable.  The I/P port I had was huge.  I know it can't be as bad as that was!  Marie

[abrite]

Here is the website for the Power Port. It sounds great. I have had a regular portacath for over 3 years and it is starting to act up. Think I will ask about the Power Port when the time comes for a new one. Hope it works well for you.

http://www.bardaccess.com/port-powerport.php

[marie3B]

The CT tech told me the power ports are good because they can be used for the CT contrast stuff as well as the blood draws.  My onc likes them best, too.  I am new to the I/V ports.  All I had before was the I/P port and that was so awful for me. I am anxious to get started.  Being on chemo is no picnic.  Doing nothing is no good either knowing that the cancer is active again.  I know this weekend I need to get alot of things done around this house.  I may not feel like it later.  Love, Marie