I was just wondering what type of results you were hoping to get from the resection

Pamela,
I was wondering if you have met with dr Sonnenday yet.  I am going to plan a visit after the embolization sideeffects subside. 
Has he explained why he believes this process will work on cancer that has spread?
Did he mention how this has worked for other patients?
Just wondering
Ed

Thanks everyone
If I am doing so well, why am I so scared.
Ed

Percy,
Thanks for all your help.  You are truly an angel in disguise.

I was lucky enough to get my oncologist, radiologist and Dr Sonnenday on the phone on a conference call literally a few minutes before the procedure.  We were able to agree that I could proceed with a radioembolization of both sides and still be eligible for surgery.  So I continue to try and find a path out of this forest...but feel lucky that I was able to get the full embolization ..and will need to decide on surgery in the coming weeks

God bless
Ed

Pamela,

I just wanted to let you know i completed the radioembolization yesterday.  All seemed to go to plan.  So now we wait for results.  I am not used to waiting, having been on a cycle of treatment and recovery for then last nine months.  But I will keep you up to date as my follow ups occur as I know Lauren hopes to follow the same path.

Also I have been in contact with Dr Sonnenday.  He has all my scans and information and it seems like I might fit his criteria for surgery.  I am very nervous though as it seems like this is just such new territory.  But nothing ventured, nothing gained I guess.

And thank you to everyone on this board .  I have an unbievable family and support group (especially my caregiver and wife) but everyone here has provided support and information at this the hardest of times.
I will keep you all up to date

Pamela,
I am finishing an 8 month trial of panitumimab / oxaliplatin / gemcitabine
We had good results early
My large tumor went from over 8 cm to 4.0 cm
And we lost 75% of the small ones
But the last few scans have been mostly stable. So we are moving to radioembolization
I still have not been able to get a surgeon to bite on surgery...maybe Lauren's doc could take. Look at my stuff.

For now they seem to be going after all the tumors...but my oncologist did mention the idea of emboli zing one side and operating on the other...

I am having a petscan today I will let u know how it goes

Pamela,
Peggy's experience was similar to mine. The overall goal of the  procedure is to get as many radioactive beads as they can to the tumors.  The first thing they do is a trial run or mapping looking to find and block any arteries that may take  the beads to other organs like the stomach.  The can do this using coils.
Secondly the need to check the lung / liver ratio on how they share blood.  If the sharing percentage has too much going to the lung then they can not do the procedure.  So far I am a go for April 3rd

Please ask any questions you want.  I might be a help just because I have a few things in common with Lauren.  I am young ish (not Lauren young).  I have small tumors on one side of the liver and a big one on the left.  I just finished eight months of a clinical trial. And once I finish this procedure i am on the hut for the next one

God bless
Ed

Pamela,
I just started the radioembolization procedure
I had the mapping process done yesterday.  And will move to the actual procedure  in two weeks.

But feel free to ask me any questions?
Percy is also a tremendous resourc and I am sure will be helpful when he is back on-line

Ed

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

17

(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?

18

(10 replies, posted in Clinical Trials)

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

19

(10 replies, posted in Clinical Trials)

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

Thanks

20

(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

21

(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.

23

(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

24

(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?

25

(2 replies, posted in General Discussion)

Anybody have thoughts or experiences with radioembolizations?