Pancreatic Cancer/Whipple/Folfirinox

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Pancreatic Cancer/Whipple/Folfirinox

by dhdebbie on Mon Apr 21, 2014 07:32 PM

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Hi --

Hubby has had another folfirinox treatment on April 9.  He has been sick almost every day since.  He has also been getting pains when he eats and has vomited several times since the treatment.  Meds are helping him very little.  He is so nervous about the surgeon telling us he is no longer a candidate for surgery (which they said at the outset he was).  Has anyone had experience with the PC getting worse after chemo? Has anyone been told they can have the Whipple and then been told that they can't?  Can the PC get worse on chemo?  

RE: Pancreatic Cancer/Whipple/Folfirinox

by compose on Thu Apr 24, 2014 11:28 AM

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hello dhdebble,

my sister was ineligible for the whipple but had the nanoknife surgery which has preserved her life beyond the expectations. it hasn't been easy but we all believe the nanoknife is the reason she's still with us. there is alot of information on this site about it so i encourage you to start investigating in case your husband is told he can't have the whipple. i wish the very best for him!

RE: Pancreatic Cancer/Whipple/Folfirinox

by PunkyD on Thu Apr 24, 2014 12:18 PM

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Dear dhdebbie,

I'm so sorry that you and your husband are dealing with PC and that the treatments have been so hard for him.  From what I've read and experienced with my mom, the PC would not get worse BECAUSE of the chemo, but DESPITE the chemo, meaning that the chemo has been ineffective. I have heard of cases where people were candidates for surgery, and then at the last minute not be candidates, and vice versa.  I don't think the PC gets worse on chemo, but the patient most definitely may FEEL worse, and have many side effects because of the chemo. 

In any case, most importantly, DON'T LOSE HOPE!!! Going through chemo just simply sucks! Maybe you can look into better pain/anti-nausea medicines with the doctors/nurses.  Once we found the pain nurse for my mom, it made such a difference.  Try to check on this site regarding menus for anti nausea during chemo treatments; I know I've seen such posts.  When do you have blood tests/scans to ascertain whether the folfirinox has been effective or not? 

Hang in there!  Thinking of you.

Punky 

RE: Pancreatic Cancer/Whipple/Folfirinox

by dhdebbie on Thu Apr 24, 2014 02:32 PM

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On Apr 24, 2014 12:18 PM PunkyD wrote:

Dear dhdebbie,

I'm so sorry that you and your husband are dealing with PC and that the treatments have been so hard for him.  From what I've read and experienced with my mom, the PC would not get worse BECAUSE of the chemo, but DESPITE the chemo, meaning that the chemo has been ineffective. I have heard of cases where people were candidates for surgery, and then at the last minute not be candidates, and vice versa.  I don't think the PC gets worse on chemo, but the patient most definitely may FEEL worse, and have many side effects because of the chemo. 

In any case, most importantly, DON'T LOSE HOPE!!! Going through chemo just simply sucks! Maybe you can look into better pain/anti-nausea medicines with the doctors/nurses.  Once we found the pain nurse for my mom, it made such a difference.  Try to check on this site regarding menus for anti nausea during chemo treatments; I know I've seen such posts.  When do you have blood tests/scans to ascertain whether the folfirinox has been effective or not? 

Hang in there!  Thinking of you.

Punky 

He had a scan on Monday and the results were not good.  The tumor actually grew and now there are a few small spots on his liver.  We are going for another opinion at CTCA in Philadelphia to see if they have any other options than those given to us by Sloan.  The surgery is now off the table which has been very upsetting to both of us.  

RE: Pancreatic Cancer/Whipple/Folfirinox

by PunkyD on Thu Apr 24, 2014 06:49 PM

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dhdebbie (debbie?)

I'm sorry to hear that.  Getting a second opinion is a great idea.  There have been success stories here on the board, and others on the internet (you can read about Kay Kayes, a survivor of almost 20 years) and others.  Keep searching options! Stay optimistic!  I know, that's easier said than done.  I understand how upsetting this cancer may be.  I've been there.  

I will add my prayers for your husband.  

Punky

RE: Pancreatic Cancer/Whipple/Folfirinox

by dhdebbie on Thu Apr 24, 2014 07:02 PM

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On Apr 24, 2014 6:49 PM PunkyD wrote:

dhdebbie (debbie?)

I'm sorry to hear that.  Getting a second opinion is a great idea.  There have been success stories here on the board, and others on the internet (you can read about Kay Kayes, a survivor of almost 20 years) and others.  Keep searching options! Stay optimistic!  I know, that's easier said than done.  I understand how upsetting this cancer may be.  I've been there.  

I will add my prayers for your husband.  

Punky

Yes, debbie it is....

I cannot believe he had the folfirinox and it did nothing and, in fact, the tumor grew and now he has the lesions on his liver which were not there on March 24 (the date of his last scan).  At that time, we were told everything was stable and the surgery was still to be scheduled.  In one month's time the tumor grew and the lesions appeared.  I am so freaked out by this.  Thanks so much for the prayers. Debbie

RE: Pancreatic Cancer/Whipple/Folfirinox

by Kjohnchas on Sat Apr 26, 2014 09:42 AM

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debbie....you made a good choice going to ctca.we are here now.and i beleive if we had not come here my husband would not be here today as at home there were not alot of options.he was on ciplitan ,etopiside,and radiation for 5 months.had a scan yesterday and tumor is still shrinking.so we are going home today for 3 more months.God is good.sendin g you prayers,stay strong and positive....kathy

RE: Pancreatic Cancer/Whipple/Folfirinox

by dhdebbie on Tue May 06, 2014 04:09 PM

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We went to CTCA in Philadelphia and hubby decided to stick with them.  He had his first new chemo (Gemzar/Abraxane) yesterday and so far is tolerating it ok.  The only thing I worry somewhat about is that CTCA is out of network for us and I worry about the 20% we will incur.  The finance people there told me that they will work with us and that in fact, alot of expenses are actually written off.  Hope that is the truth.  We are not rich.  Glad to hear your good news.  Enjoy the time at home with your husband.  

RE: Pancreatic Cancer/Whipple/Folfirinox

by debistalnaker on Wed May 07, 2014 07:17 PM

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Investigste the nanoknife. Call Dr Kortz st Swedish Medical in Englewood Colorado. My Dad just had nanoknife to kill his PC tumor. They can use the nanoknife on soft tissue tumors but there may be a size limit, Dads tumor was 4.2cm. Dr Kortz and his team are awesome.

My Best, Debbie

RE: Pancreatic Cancer/Whipple/Folfirinox

by debistalnaker on Wed May 07, 2014 07:18 PM

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Investigate the nanoknife. Call Dr Kortz st Swedish Medical in Englewood Colorado. My Dad just had nanoknife to kill his PC tumor. They can use the nanoknife on soft tissue tumors but there may be a size limit, Dads tumor was 4.2cm. Dr Kortz and his team are awesome.

My Best, Debbie

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