Fatema,
My doctor said that two weeks  for chemo to clear out was ok. So 10 days in your mom's case does not sound unreasonable.

I am scheduled for PET scan Monday and mapping on Tuesday.  And then procedure on April 3.  I will keep everyone up to date with progress and hope that this treatment can be the start of a long path for many of us here
Ed

Percy,
I was lucky enough to get insurance approval fairly quickly.  So that is all set to go.  I will continue to update the board.  Everyone here has been such a great source of support.  I hope that we are all moving toward that day when this terrible disease is controllable and curable.

Fatema,

I hope all is going well for your family and that your mom has great success with the treatment.

My original treatment was the GEMOX + panitumimab trial....I did treatments every other week and had 18 of them...so 36 weeks of treatment

I am going to find out how long I need to be off gem tomorrow.  Because I have been on treatment so long I think the plan will be wait until after the radioembolization is done to figure out if more chemo is necessary.. But gem + capecitabine has been mentioned

Ed

Percy and Fatema,

I am currently working with my radiologist to schedule the radioembolization.
I just finished my 18th cycle on the trial and the skin toxicity associated with the panitumimab continues to take a toll.  I also had to stop the oxaliplatin due to  nueropothy.

I will keep you up to date as I progress and I have my fingers crossed this will kill the remaining 40% of my cancer

Ed

Percy
I will follow up with my onc and interventional radiologist but my guess is that data is very limited
The study does discuss that the reason for difference may be aggressiveness of tumor or length of treatment of those on centuximab.  Which seems reasonable
Either way I will hope that I am different enough from centuximab cohorts in this study to get a more median intraheptic response

Percy
Thanks for all the great perspective.   It helps a lot to have someone as knowledgeable as you sorting out some of the same options

Yes I am still on the trial....17 treatments...and I had a scan last week.it was mostly stable....my large tumor went from 4.0cm x 3.8 cm to 4.1 cm x 3.5 cm

The right side has not changed much since treatment 12

So the debate becomes continue with a treatment that is keeping me stable (side effects on skin and neuropathy are no picnic), try new nchemo with hopes of shrinking some more....or embolism ....

I agree with your philosophy....I have two teenage boys and so I am hopeful if I can keep my boat floating for a couple of years....someone will throw me a life preserver

Percy
Thanks for all the posts
It looks like I will be headed for radioembolization in the month
I am trying a couple follow up surgical opinions first
Do you have any feel for the likelyhood of surgery after RE
Thanks

Jim,
If you don't consider it private information...can you let us know how you friend has done since November with the radioembolization?
Ed

Byron,
I am in the middle of the process right now.  I should hear from the insurance company soon.  We have been getting support from Sirtex, the maker of the spheres.  They seem to have some insights in how to discuss with the insurance companies.
Ed

9

(24 replies, posted in Introductions!)

Jessica,
I am currently being treated at mass general in Boston and have meetings with many of the doctors, oncologists, radio oncologists, and surgeon...
If you don't mind me asking ....what is the referral name you were given?

If I met with your referral maybe I can give some insight?

10

(10 replies, posted in Clinical Trials)

Pcl1029
I tried some cut and paste with my blackberry
Let me know if it worked
Thanks

11

(10 replies, posted in Clinical Trials)

Pcl1029
I sent an email but I am not sure it went through.  Can you confirm?

Thanks

12

(10 replies, posted in Clinical Trials)

Percy
I would be glad to give you the requested information.
I am still on the trial and headed for treatment 14 this week
We are getting to an interesting point as scans show reductions, but the third scan had a smaller reduction than the first two.
Quick question how do I get the email address?
Thanks

13

(10 replies, posted in Clinical Trials)

Pcl1029
Do you have any opinion about radioembolizations.  It is being discussed as a potential treatment option and i would appreciate anything you might have to share?

Gavin
Thanks for the post
My doctor has been talking about this mutation to me and seems very excited about the possibilities.  He said a lot of companies and hospitals are looking at how to target it.  He wants to keep an eye out for any phase one trails.  He said timing could be anything...but good to think there is a potential new treatment out there.

15

(25 replies, posted in General Discussion)

Byron,
I am on a trial similar to the ones mentioned by Eli.  Instead of centuximab I am on a protocol that combines panitumimab with gem/ox.  The centuximab studies seem to have some better results but the concepts are the same.  Combine chemo with a monoclodial to slow growth while killing at the same time

16

(2 replies, posted in General Discussion)

I was in treatment yesterday and saw a webinar on radioembolization displayed on the board
Does anyone know who to view a replay?
Did anyone view it and have an opinion?

17

(2 replies, posted in General Discussion)

Anybody have thoughts or experiences with radioembolizations?

18

(26 replies, posted in Introductions!)

Pcl1029
Thanks for the clarification
I was just thinking that the medians would still fall in stable disease group
Just more proof how important response rates are to any treatment with this cancer

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(26 replies, posted in Introductions!)

Pcl and Eli
Thanks for the information on the studies. There is not much info out there on
these trials
And even the posted results look a little hard to get a handle on
The panitumimab trial seems to have such a low reaction rate
With only 33% getting a reaction and only 8 people having over > a grade 2 rash?
Based on those rates no one having a response is in the median Pfs or os
Hopefully over time more data will become available detailing groups that had responses
Thanks

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(26 replies, posted in Introductions!)

Pcl1029
I didn't get a copy of my bio markers report but have a treatment coming up this week and will get a copy.  As for an RNA analysis I will have to say you are way ahead of me with most of this stuff ....what is an RNA analysis?
I have noticed that you have been fighting this cancer for awhile with some success...has it been a constant cycle of therapy and recovery or have there been periods of (new) normalcy

Susie
Thanks so much for welcoming me...although I have been on this site so many times it feels funny to be welcomed. 
I will try and keep people up to date on my treatment...although now that I am posting it does feel a little strange....I can see where people would not want to post if things are not going well (depressing)... And if things are going ok....you don't want to feel/ sound over confident ...given the quickness with which this disease can turn on you....

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(26 replies, posted in Introductions!)

Plc1029
Thank you for he advice.  We are already talking next steps for when this treatment starts to fade.  We actually had to do it earlier due to some skin rashes that we finally got under control
As part of the trial have scans every eight weeks
I am not really close to Rfa or surgery territory yet...but hope with a little more improvement to start down the y spheres road
That seems to be another area where the good results buzz is picking up

To anyone else that has questions about panitumimab trial please feel free to ask

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(26 replies, posted in Introductions!)

Like many on this site I did not have many symptoms
I started to get some pain after fatty meals and had a bad couple of days after a weekend away..but the pain was not too bad...I was thinking gall bladder
My diet was good and loved seafood
Again like many on this site I am in pretty good health ...46 year old
Run 4 times a week plus 2 days at the gym...coach my sons hockey and basketball teams
MGH did do the full bio markers and this was the only match for existing medication....but they did say that there is another marker that is getting a lot of research attention (because it has applications across many cancers) that I am a match for that ad could be seeing new trials within a year...so I need to keep an eye out
The current treatment has seen response in both the large and small tumors
Shrinkage as well as not seeing some of the smaller ones
So we live scan to scan and hope that this treatment leads to another more targeted treatment down the road

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(26 replies, posted in Introductions!)

Pcl1029
That study was one of the reasons I decided to give the trial a shot
Those response rated/complete response rates/resection rates seemed higher
Than anything i had seen
I know it was a small single site study
But hope springs eternal

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(26 replies, posted in Introductions!)

I believe I am stage 4 intraheptic.  I have one large tumor in one lobe of the liver and had many small ones on the other side. 
I have been on the trial since mid july at mass general hospital
I have tried to research many of the panitumimab and centuximab results but data seems scarce
And discussion boards where people discuss recent experience is limited as well

I am just hoping maybe some of the unknown around the drugs means there is opportunity for better outcomes

I have been logging on to this site since being diagnosed back in the early summer.  But this is my first post.  I have been amazed at how open and brave  so many of you are

I am hoping to try and find others who are undergoing similar treatments.  I was diagnosed with non-resectible cholangiocarcinoma and started on three drug trial, gem/ox + panitumimab.

Although the side effects have been tough i have seen some gains against the cancer.  I have been surprised that there are not a few more people on this trial given the number of people being given gem/ox as treatment

I would love to hear any first hand experiences or opinions on treatments that combine chemo and a monoclodial antibody
Thank you