6 docs / 6 opinions

I have PC which was originally borderline resectable.  I received neoadjuvant chemoradiation (gemzar+radiation), but it failed to get me to surgery (recent mets to spine). 

So, I’ve spent the past 2 weeks collecting as many opinions as possible on what chemo regimen to take.  I met or spoke with 6 docs and received 6 different opinions !! (some are similar, I guess).

I’m having a lot of trouble deciding, so I thought I would try a very unscientific poll to see what other people have had good experiences with.

Btw, I’m a 30yo male with basically no symptoms, so I’m not terribly concerned about tolerating side effects.  Also, fwiw, I tolerated the Gemzar very well(albeit it was a low dose due to concurrent radiation).

Any and all responses are welcome.  Thanks!!!

-Rich

I spoke with Columbia, Stanford, UCSF, MDAnderson, WeillCornell, and TGen and here are their recommendations (in no particular order)

1.) Tarceva + Xeloda (* -- the “first opinion” I received)

2.) Gemzar + Xeloda

3.) Gemzar + Taxotere + Xeloda (GTX)

4.) FOLFOX or XELOX (Xeloda instead of 5Fu)

5.) FOLFOX or FOLFIRI

6.) Recommended a clinical trial they are running using an experimental drug.  Otherwise, (1) Tarceva+Xeloda seemed “reasonable”

On 8/24/2009 fooserific wrote:

I have PC which was originally borderline resectable.  I received neoadjuvant chemoradiation (gemzar+radiation), but it failed to get me to surgery (recent mets to spine). 

 

So, I’ve spent the past 2 weeks collecting as many opinions as possible on what chemo regimen to take.  I met or spoke with 6 docs and received 6 different opinions !! (some are similar, I guess).

 

I’m having a lot of trouble deciding, so I thought I would try a very unscientific poll to see what other people have had good experiences with.

 

Btw, I’m a 30yo male with basically no symptoms, so I’m not terribly concerned about tolerating side effects.  Also, fwiw, I tolerated the Gemzar very well(albeit it was a low dose due to concurrent radiation).

 

Any and all responses are welcome.  Thanks!!!

 

-Rich

 

I spoke with Columbia, Stanford, UCSF, MDAnderson, WeillCornell, and TGen and here are their recommendations (in no particular order)

 

1.) Tarceva + Xeloda (* -- the “first opinion” I received)

 

2.) Gemzar + Xeloda

3.) Gemzar + Taxotere + Xeloda (GTX)

 

4.) FOLFOX or XELOX (Xeloda instead of 5Fu)

5.) FOLFOX or FOLFIRI

 

6.) Recommended a clinical trial they are running using an experimental drug.  Otherwise, (1) Tarceva+Xeloda seemed “reasonable”

 

If you are not comfortable with any of the responses, keep looking.  I did.  I dealt with the MDA for 8 months and there was always "something else" they wanted to look at rather than the cancer I originally went down there for.  Now, I have found CTCA and within less than 30 days, they have reinvestigated my initial diagnosis and are proceeding with a treatment plan I can live with.  You must ask the questions and be your own advocate.  I was told at MDA that I asked too many questions and just needed to know that "they know"!  Well, not me.  I need to be comfortable and feel that the medical personnel REALLY know what they are doing and I do at CTCA.  Good luck and remember a positive attitude and "YES I CAN" will be a big part in recovery.  With your diagnosis, speed is a BIG part of winning this battle.  Get out there and FIGHT.  Good Luck.

Cathy

Rich

I'm so sorry, you are the youngest person at 30 that I have ever heard of having this, where you told that?

Did call pan can or post on John Hopkins Pancreatic message board, they are "the" website/message board for panc can, and WILL give you solid educated advice!

                       you sound like a fighter,

                       the very best-hope and faith,

                                  Denise

Oh, oh, God bless it,

Please let me know what you are going through.  I have been through the crap of Inoperable pancreatic cancer.  I lost someone who should have not died of it.  Healthy, beautiful, and no predisposing factors.  I watched this beautiful person (mom at 48) die of this disturbing disease. 

 I am an intensive care nurse, so I know the expeirence of losing someone. 

I wish they would just remove the cancer.  The doctors keep thinking that Gemzar is the answer of Chemotherapy to start with.  It laughed at my mom's inoperable tumor.  I would go for the biggest guns they have. 

Oh, I forgot to say.  5FU is a very strong chemotherapy.  It will cause a lot of nausea and weakness, but you are fighting a very mean cancer and for you not to have symptoms yet is already blessing #1.   It is all about quality of life.  Go for the big guns or think about your quality of life.  As you already know you need to shrink that tumor.  They should be able to do radiation if the cancer has not spread.  I was going to take my mom to Mayo or John Hopkins, but the doctor that took care of her taught some of the new oncologists at Mayo and I thought well he knows his stuff.  However, my mom being a nurse for over 24 years was not excited about fighting a beast that gave her a lot of pain. 

 I will pray for you and wish you a miracle...  

 Jillian

 P.S.  You are my age.  What an age to be....