NEW TO THE BOARD FOLFIRINOX???

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RE: New To The Board FOLFIRINOX???

by Carien on Fri Jan 17, 2014 11:36 AM

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Hi Tom,

I can relate to the sense of dissapointment you mentioned after the first scan  (after 4 rounds of Folfirinox). I had the same thing. I had gotten back strength and appetite and the oncologist was hopeful, but then the scan showed no shrinking at all.

However, with a pancreatic tumor, it may well be that the cancercells are dying, but the tissue around it (the cancercells actually produce tissue that is not malignent that surround them, I dont know the English word for it) is still there. My surgeon explained this to me, and told me that he focusses more on the CA 19,9 than the CT scan when the scan shows no or minor changes.

All in all my tumor shrank only very little in the last year (from 7 to 5 cm) , but my CA 19,9 was down to only 27 the last time they measured !! That is as low as a healthy person. It was never as high as yours though, I came from 1000. I feel better right now than I have been in over a year (except for the neuropathy and weird hair and less energy than I was used to). I have no official therapy now, except my diet, ayurvedic pills and my bittermelon juice, no operation as long as my bloodwork is as good as it is. They monitor me, for now.

From what you write you seem to respond absolutely great to the Folfirinox. I hope your numbers will continue to drop to below 40, and that you will feel great and enjoy life, and hopefully for a long time to come !

Carien

RE: New To The Board FOLFIRINOX???

by kat228 on Mon Jan 20, 2014 12:07 AM

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Hello, Sorry to hear about your dx. My husband has been on Fulfirinox for 9 months. It did get easier for him and now after the last CT scan, no tumor was defined in his panceas. He had stage 4 PC. Hang in there. You can do it. Don't give up. Best regards, Kat228

RE: New To The Board FOLFIRINOX???

by kat228 on Mon Jan 20, 2014 12:23 AM

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Tom, My husband's Ca19-9 dropped steadily and the CT scan  showed no shrinkage in the first 3 months. His platelets dropped and sometimes could not get chemo. Also his white cells dropped and they gave him Neulasta, which helped alot. The Dr still did Fulfirinox at 75,000 platelets, which is the protocol. He is doing well now. Hang in there. Kat228

RE: New To The Board FOLFIRINOX???

by TOMA76 on Tue Feb 04, 2014 03:35 PM

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Carien,

         Thank you for the message and sorry about my late reply. I just finished round 7 last week. The drop I had in my Ca 9 19 this week was not as a good as it has been but I guess at least its still going down. I was at 2420 down to 1870 . How long have you been going without treatment?Hoping I respond as well as you have.I hope everything continues to go well for you.

                                                    Tom

RE: New To The Board FOLFIRINOX???

by TOMA76 on Tue Feb 04, 2014 03:51 PM

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Katt

        Thanks for the response. I hope he is still doing well.

Had 2 questions.  1 Is he still doing chemo??2 Where else did he have spots and are the still there??  Just asking cause I like to hear from anybody that is doing well with this terrible disease. Hoping everyone on here is getting better.

                              Tom

RE: New To The Board FOLFIRINOX???

by Kjohnchas on Wed Feb 05, 2014 10:14 AM

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Tom,,,,was wondering about you,sounds like your doing better and staying positive. All is good here back to doings things again though he tries and hides things from me so I'm not yelling at him lol yesterday he said I can't just sit around,I said I know you can't lol. Did you say you were back to work? Kathy

RE: New To The Board FOLFIRINOX???

by TOMA76 on Wed Feb 05, 2014 11:42 AM

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Kathy

             I m so glad that he is back home and doing good. I follow all the posts on here and was worried about him when when he was in the hospital. I understand the hiding things ...were guys..we all do that we're just big kids. As far as work goes I have never stopped working through all of this. I work 3 days during my treatment week and 6 days on my off week. The doctor has never told me to stop and I dont know anything else so I just go. The 3 days on my treatment weeks are hard. I m usually so tired that I just want to collapse when I get home. Physically  I think I m doing ok...mentally not so shure...4 months in and I m still a mess. So far that has been the worst part. 

                                                                                         Tom

RE: New To The Board FOLFIRINOX???

by kat228 on Thu Feb 06, 2014 02:57 AM

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On Feb 04, 2014 3:51 PM TOMA76 wrote:

Katt

        Thanks for the response. I hope he is still doing well.

Had 2 questions.  1 Is he still doing chemo??2 Where else did he have spots and are the still there??  Just asking cause I like to hear from anybody that is doing well with this terrible disease. Hoping everyone on here is getting better.

                              Tom

Mike had a Pet Scan today. Will let you know the results from Monday Feb 10. 2014. Hope all is well. Best regards, Kat228

RE: New To The Board FOLFIRINOX???

by kat228 on Thu Feb 06, 2014 03:11 AM

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On Feb 04, 2014 3:51 PM TOMA76 wrote:

Katt

        Thanks for the response. I hope he is still doing well.

Had 2 questions.  1 Is he still doing chemo??2 Where else did he have spots and are the still there??  Just asking cause I like to hear from anybody that is doing well with this terrible disease. Hoping everyone on here is getting better.

                              Tom

Tom, My husband received chemo last on Jan 29th. No other spots are identified on CT scan. We will find out Monday, Feb 10. the verdict. Kat228

RE: New To The Board FOLFIRINOX???

by Carien on Thu Feb 06, 2014 09:36 AM

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Hi Tom,

I am now about 3 months without treatment. That is: without treatment in the hospital. I still have my ayurvedic medicine, drink my daily bittermelonjuice. (if you are interested there is more on that on my blog: www.careensblog.wordpress.com ), no sugar, only wholeweat, budwig breakfast, etc etc. 
I will get my latest bloodwork coming tuesday. Hoping that the CA19,9 and the CEA are still as low ! (or lower :) )

They took me off the Folfirinox after 8 rounds because the scan after the 8th round still showed no shrinking. I had radiationtherapy after that.

I realize from your last posts that you still work almost fulltime. WOW. During chemo I needed about 6 days after the chemo to recover a bit. I would be on loperamide every other day. By the way: there is a guy in the Netherlands who, after the cancer started becoming more active again despite the Folfirinox, is now on a combination of Abraxane and Chemcitibine and reacting well to that.. He feels ok and the cancer stabilized. He has stage IV. Good luck with everything Tom. Enjoy your life.

Carien  

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