T2 Adenocarcinoma, Chemo?

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RE: T2 Adenocarcinoma, Chemo?

by RocknIraqVet on Thu Dec 13, 2012 07:56 PM

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Hi Maudise!

Sorry, I'm not trying to come of as an alarmist.  The American Cancer Society statistics are actually far worse.  But those numbers are based on studies going back to the 1980's. 

To help my decision I want the most recent data based on new protocols.  Specifically on the risk/benefit of post-operative radiation/chemotherapy for gallbladder cancer.

I discovered a 2008 study on "benefit of post-operative radiation therapy for gallbladder cancer", done by Charles R. Thomas, Jr., M.D. Chair, Radiation Oncology for ACOSOG.  Dr Thomas works at Knight Cancer Institute and Oregon Health & Science Center in Portland, OR.  They are the ones who put the calculator online.

The American College Of Surgeons Oncology Group (ACOSOG) is composed of the Operations and Membership Center located at theDuke Clinical Research Instituteon the Duke University Medical Center campus and the Statistics and Data Center located at theMayo Clinic Cancer Center.

Your right, I'm trying to figure all this out.  It would be a heck of a lot easier for me if it the decision was clear cut.  But I'm faced with Medical people who either don't have time to discuss my case with me (I found out third hand there was a "tumor board" at UCLA conducted on my case and I wasn't even told about it), or they aren't even versed in this rare disease. 

I'm in the process now of learning exactly what the risks of treatment are.  My local Onc. is working with me on that.  When I do make the final decision, it will be based on all the risk/benefit info I can find.

I think this is what they call "Fighting Cancer".  I'm advocating for myself. 

RE: T2 Adenocarcinoma, Chemo?

by Maudsie on Thu Dec 13, 2012 08:26 PM

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...and what an awesome advocate you are.  And that is exactly what you have to do...do the research, ask the questions, become an expert in something you never even probably heard of 6 months ago.  It's a crazy thing, isn't it?

   I didn't take it that you were coming off "alarmist" at all.  I just don't get it when I read the statistics for GBC, I'm talking about EARLY GBC here, after successful radical surgery, to still see fairly dismal outcomes on these sorts of charts and calculators.  It makes no sense, maybe they were more timid with the surgery a decade or two ago, and these studies indeed are based on old retrospective data (since there is very little NEW data because of the rarity of GBC).

Anyway, I will be very interested in what you finally come up with in terms of risk/benefit with radiotherapy.

M.

RE: T2 Adenocarcinoma, Chemo?

by RocknIraqVet on Thu Dec 13, 2012 09:19 PM

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On Dec 13, 2012 8:26 PM Maudsie wrote:

...and what an awesome advocate you are.  And that is exactly what you have to do...do the research, ask the questions, become an expert in something you never even probably heard of 6 months ago.  It's a crazy thing, isn't it?

   I didn't take it that you were coming off "alarmist" at all.  I just don't get it when I read the statistics for GBC, I'm talking about EARLY GBC here, after successful radical surgery, to still see fairly dismal outcomes on these sorts of charts and calculators.  It makes no sense, maybe they were more timid with the surgery a decade or two ago, and these studies indeed are based on old retrospective data (since there is very little NEW data because of the rarity of GBC).

Anyway, I will be very interested in what you finally come up with in terms of risk/benefit with radiotherapy.

M.

Hi  :)

I concede you are right, I did see the word 'retrospective' in the commentary. 

Well...   I guess from time to time I get a little worked up over this stuff.  But I have to say, I have enjoyed the conversation here today, and you have brought a smile to my face.

:)

RE: T2 Adenocarcinoma, Chemo?

by Maudsie on Thu Dec 13, 2012 10:01 PM

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good.  keep smilin'

RE: T2 Adenocarcinoma, Chemo?

by RocknIraqVet on Thu Jan 10, 2013 06:28 PM

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On Dec 05, 2012 6:59 AM RocknIraqVet wrote:

I was diagnosed 9-25-2012, incidental discovery after having my gallbladder removed for gallstones.

I am in my fourth week of recovery from liver and node surgery.

I am staged T2N0M0.  I would like to hear from anyone with this same diagnosis, and hear if you had chemo after resection surgery, as insurance to prevent recurrance.

I consulted with three doctors.  One said "we do not reccomend adjuvant therapy", the other two pointed out to me that "There are limited clinical trial data to define a standard regimen or definitive benefit".  They both left it up to me saying- "It's your call".

I weighed it out.  With the help of my oncologist made a firm decision to follow the general recommendation found in the NCCN Guidelines for gemcitabine chemotherapy, as an adjuvant therapy.  My insurance approved it as well.  I had the first treatment on Monday 1-7-2013, eight weeks out from re-section surgery.   

RE: T2 Adenocarcinoma, Chemo?

by Maudsie on Thu Jan 10, 2013 06:57 PM

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Hi....I've been thinking about you quite a bit these last few days, and was getting ready to write/call you....and I see you have posted here.  So.  You are doing the Gemzar.  Well, a decision after careful consideration and weighing pros and cons. Excellent. Did you get a port placed for it?  I was at first not wanting one, then I saw how great they can be and my mind got changed.  Let me know how you do.  After the gemcitibine infusion, are they giving you a little steroid or something to help with side effects?  I really did fine.  Got Gemzar once a week (I think it was, gotta look it up) and it seemed like I felt like I had minor flu-like symptoms on day 3 or 4, then better again each day, and fine by the time I was going in for my next infusion.  Keep in touch.

m

RE: T2 Adenocarcinoma, Chemo?

by RocknIraqVet on Thu Jan 10, 2013 07:22 PM

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Hi Maudsie!

Good to hear from you! 

I am considering a port.  I can see how a port would help.  I have a bump on my hand from where the IV was on Monday.

I'm getting Zofran and Decadron for the nausea.  I was pretty amped up Monday night.  They said that might happen.  The next two days I had the 'flu like' symptoms.  Yesterday I got pretty tired.  Still feeling it.

The chemo schedule is once a week for three weeks, then one week off, for six months.

I'm still recovering from the surgery but doing everything I can to support healing.  Going for walks daily, eating healthy, etc...  Also paying close attention to all the instructions from the oncology doctor and nurses.

RE: T2 Adenocarcinoma, Chemo?

by Maudsie on Thu Jan 10, 2013 07:56 PM

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Awesome. Exactly.  Decadron is what I got, too, after the first infusion of Gemzar, and yes sleep is a bit harder that first night!!! But it's good stuff. And I got Zofran if I neeeded it, hardly ever did.  And also your schedule sounds like mine:  2 weeks on, one off.  I think there were times when we had to space out the Gemzar to every other week because my blood counts got a bit low.  It happens.  You will like the port I think. .  You'll be sore the first night with it, after they put it in, then fine.  You just have a little bump.  That chemo can quickly ruin what starts out as good veins.

See how it goes.  I'll be here.

m.

RE: T2 Adenocarcinoma, Chemo?

by WillieRay on Fri Nov 14, 2014 02:24 AM

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I have the identical experience. After resection surgery was totally clean the hard part started.

After talking to 5 Oncoligists I got a total mixed response. Two said to do nothing but observe every 6 months with blood and maybe CT scans for 2 or 3 years. Two recommended chemoradiation adjunct therapy and 1 said it was my choice.

I opted for the chemoradiation as preventived reoccurance.

I have just completed week 3 out of 5 weeks with 3 Xelota (500mg) after breakfast and after dinner with radiation Mon thru Fri. The Xelota acts as a radiation enhanser.

Todate only side effect started yesterday with a small mouth sore. Got Magic Mouthwash to night. Time will tell.

Plan is to observe like listed above for 2 years. GBC has a 50% return probability but only for 2 or 3 years

RE: T2 Adenocarcinoma, Chemo?

by RocknIraqVet on Fri Nov 14, 2014 03:06 AM

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On Nov 14, 2014 2:24 AM WillieRay wrote:

I have the identical experience. After resection surgery was totally clean the hard part started.

After talking to 5 Oncoligists I got a total mixed response. Two said to do nothing but observe every 6 months with blood and maybe CT scans for 2 or 3 years. Two recommended chemoradiation adjunct therapy and 1 said it was my choice.

I opted for the chemoradiation as preventived reoccurance.

I have just completed week 3 out of 5 weeks with 3 Xelota (500mg) after breakfast and after dinner with radiation Mon thru Fri. The Xelota acts as a radiation enhanser.

Todate only side effect started yesterday with a small mouth sore. Got Magic Mouthwash to night. Time will tell.

Plan is to observe like listed above for 2 years. GBC has a 50% return probability but only for 2 or 3 years

WillieRay it sounds like you've done your homework.  Good on ya.  I'm now two years out from resection, and about a year and a half out from chemo.  Still under surveillance, get the blood checked every two months and CT Scans every six months, I'll have another scan in March 2015.  All things considered, life's good.

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