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Back from Chicago

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
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33 Comments
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107366_tn?1305683975
You may have already posted this, but what chemo are they considering?  Has anyone mentioned Camptosar?  The reason I am asking is because for a long time, my Oncologist at home wanted me to try that because he thought my cancer cells might be similar to colon cancer.  Anyway, it does sound like you made a long trip for not much information.  Did they even do blood work?  Grade 1 cancer does have some challenges, but the good part is that it moves slowly.  I keep hoping while mine is in the process of slowly moving along, some new treatment will emerge to treat it.  Any ideas when you will start treatment, or possibly have surgery?  I'm sorry you didn't get a better feeling about today's visit, but I don't think it was a wasted trip.  I think everyone needs a second opinion at the very least.  So maybe this will increase your confidence in your local doctor.  Peace of mind is so much a part of controlling this disease.  

Love,
Gail
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Marie,
I am sorry to hear that this trip didn't go well and you can't start the Avastin.  This doctor sounded very negative and I wish you didn't have to go through that. I hope that your home town onc will continue to be supportive and give you the options of surgery/chemo. Will continue to pray that these treatments will work and you keep fighting! You are strong, that woman doctor doesn't know who she is dealing with. Hugs, Colleen
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You had to go to Chicago so your insurance could pay another doctor to offer that crappy opinion.  Sorry to sound so cynical, I think they all pad each others billing.  
Stick with the home town gal, she sounds much more encouraging.
Love,
Sharon
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408448_tn?1286887421
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
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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
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564735_tn?1263947126
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
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415684_tn?1257332918
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
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408448_tn?1286887421
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

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225036_tn?1294513000
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
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725998_tn?1258052308
Marie, I can't believe the doctor spoke to you that way!  I don't really care that some of them feel they need to be "detached" in order to do their job.  That's bulls***t!  Part of being a healer is dealing with the patients emotional needs as well.

There are great doctors everywhere, not just in the big cities.  I'm sure your hometown physician knows what to do and how to get you through this.

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I am so sorry for the Doctor's negativity....But I am so glad you are positive...As always you are in my thoughts and prayers.
Love,
Dawnlyn
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356929_tn?1246393356
Marie, you must be flat out exhausted. I'm so sorry you had to put up with all of this.. Hoping tomorrow will look better for you and you can get some plans in order to kick this thing in the teeth.. !!!

Take care,
Love, Sandy
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282804_tn?1236837191
Marie, I am really sorry you were subjected to all of that.

I'm with Gail. What DID they do while you were there? Did they take your BP, do blood work, something?

When my onc told me the possible side effects of Avastin (perforated bowel, etc.) it about scared me silly, but I agree that you should go for the surgery if it will buy you some more time for the Avastin or something else to start working.  By the way, the Dr who says it isn't worth it for this or that surgery has never had to fight for just one more day with his/her spouse, child, mother, etc or they would know that it IS worth it.

How have you been gauging your tumor growth if the PET scans have not been working well?

I hope you are taking care of yourself and that the others in your life for whom you have done so much are pitching in a little more to help you out.  Take care honey and you will continue to be in my prayers.
Love,
Jan
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643704_tn?1304688032
Marie, I say poop on the Doctor in Chicago.  You have a positive attidude and you can fight this.  You may be tired right now, because of your trip, but keep following your local doctors advice.  Do whatever it takes to beat this thing down.  We will be right here to help you. You are always in my prayers

GO MARIE!!!!!!!

Love, Lisa

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408448_tn?1286887421
Wow!  I woke up this morning and came straight to the computer.  Glad I did.  After reading this from all of you I feel like my batteries have been super-charged.

Jan,  They did take my b/p up there and weigh me.  Other than that they just flipped through some of my records and gave the suggestion on a chemo to try.  I go see my own onc today.  I want to get going and do something.  I know my body and I feel the tumors growing.  No, they haven't used pet scans to follow me.  The first one of those I had was last week and have not been told what it shows.  Ct found the tumor near the liver on the last scan, but til then it didn't show up.  The Chicago doc said my tumor type probably won't show much on the PET because of the low grade cell type.  No one else has ever told me that.  Also said Ct not reliable for me.  She said there is no tumor marker blood test for me and no reliable scan for me. I guess I am a difficult case.  That figures.  

Flicka,  You really gave me a laugh....a much needed one.

Love, Marie
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You have such a positive attitude and you're a fighter, and obviously well educated in this damn disease! I know you won't just sit back!
I agree with Flicka, she gave me a smile too, "poop" on that Chicago Dr., their politics are a mess there also.
We'll be waiting to hear what your oncologist and you decide is the next best step for you.
Jane
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Dear Marie...never give up hope.  I am so, SO sorry that the doctor in Chicago left you feeling a little hopeless.  You are a fighter.  I say stick to your ONC and don't go back to the Chicago one.  Who needs that???

Love you,
L
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408448_tn?1286887421
I have returned from my Peoria onc appointment feeling much better than I felt after leaving Chicago.  My onc had not yet heard from the U of Chicago onc, but had a plan of action of her own ready.  She was thinking that since I have had so much time since chemo without detectable signs of recurrence that I am platinum sensitive to some degree.  She wanted to try Carboplatin and Taxotere.  I told her the other onc wants to try the oxiliplatin 5fu combo and was sending my slides and discs to the tumor board next Wednesday.  My doc wants to get the recommendations from the full tumor board before deciding which to use.  She may or may not go with their advice.  Since she seems more confident in helping me than the other one I told her I would go with what she chooses.  She also said that surgery will be part of my treatment.  That I agreed with 100%.  Why leave anything in if it can be cut out??  She will do some chemo first, check the results, remove what is left then finish chemo.  Sounded like the way to go to me.  When I told her the other doc was so negative she assured me that I will be ready to give up long before she will be ready to give up on me.  That really made me feel better. I go next Friday to have a power-port put in.  Then on 3/2 I start chemo with whatever agents she decides to try.  That is the plan.  Sorry to go on and on, but if you could see how hyper I am right now it would make more sense.  Thank you everyone for all of your help.  Love, Marie
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Hooray! I am so glad there is a plan in place and that you have a doctor who cares about you as a person and is an advocate for what is best for you. Keeping you in my prayers!
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I for one will NEVER give up on YOU!!
Love,
Sharon
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187666_tn?1331176945
Well, it certainly sounds like a plan is set in place. It's so much better to have something to do instead of all the waiting and listening to doctors cogitate and ruminate. I've never heard of a power port but I hope it works twice as well as the regular types. Hugs
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408448_tn?1286887421
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
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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
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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
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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
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415684_tn?1257332918
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

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135691_tn?1271100723
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
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408448_tn?1286887421
The Chicago onc was not in favor of Avastin for me, but my own onc is.  She is looking into all options.  If I have the damaged part of my colon removed I am at no greater risk of perforation than others.  My own onc does want to do surgery on me so it looks like I may get to  try Avastin at some point.  I hope they decide soon what I will try first so I can get all the details on those drugs.  I never have learned to wait patiently for answers!!  Even though my cell type is slow growing, this tumor near the liver is growing enough that I can now feel it all the time. Take care.  Marie
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564735_tn?1263947126
Oh I really hope you can get the Avastin. It sounds like if they give you avastin then you will be getting pretty much the same chemo as I am on. These drugs have worked great for me. I hope they works as well for you. I can't imagine how weird it would be to feel the tumor on your liver. Just a heads up my onc. nurse said they usually give 12 rounds of my chemo regime and that is what they are giving me. I have my chemo rounds every two weeks. Have they said how many and how often yet? Good Luck with what ever they decide. Keep us informed. Love, Julie
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They are still undecided on which way to go with the chemo.  The tumor I feel is coming down from the diaphragm just behind the liver. I feel it from just under the right front rib cage through to my back.  Not a pain, but a feeling of pressure and soreness and once in awhile a twinge.  It is worse since the biopsy, but I noticed the sore feeling of pressure starting last fall.  My internal med doc said it must be a muscle from carrying the baby.  My onc said it might be my gallstones acting up.  Love, Marie
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415684_tn?1257332918
Marie:

I, too, have a spot .. just outside my right rib cage .. that is mildly painful .. and occasionally more noticeable when I take a deep breath.  It comes and goes and I often feel it at night when trying to fall asleep or turning over.  During the day, it comes and goes.  I've mentioned it every time to my Onc and he says "Judy, you had so much surgery, it's no surprise".  I also know I have the 2.2cm spot on or by my liver, so it plays with my head.  I do NOT have pain thru to the back.  I try to reassure myself that it's some surgery backlash, or maybe even my gallbladder .. but I worry nevertheless.  Just wanted you to know that you are not alone in worrying about stuff like this.  I think it is human nature when walking the road we are on.  God Bless You, Judy
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Judy, Thanks.  I know the area I feel is the tumor.  The feeling grew more intense after the biopsy.  Dr. L thinks it will be operable if chemo doesn't shrink it. I am short of breath alot, but that could be the anemia.  Am I a mess or what?  Odd thing is that I don't feel like a sick person even with all of these things going on in my body.  I may be low on energy, but I am ok.  I am thankful for that beyond words. The rest of my family jump in their sick beds at the slightest hint of the sniffles or any minor pain.  Love, Marie
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Marie,
  I feel like I have been gone forever! You have really been having a go of it haven't you?
I am glad that your Dr helped to ease your mind from the trip to Chicago and now has a plan in motion. I will not give up on you either.
  Take care and keep kicking cancer in the butt!
        Love Chris
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