Stage IV with very good result after 8 cycles of FOLFIRINOX - surgery?

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Stage IV with very good result after 8 cycles of FOLFIRINOX - surgery?

by dessmo on Thu May 11, 2017 06:29 PM

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Just got the result after eight cycles of FOLFIRINOX. The CT pictures show very good effect of the chemo. The tumor did not shrink so much during the latest four cycles, but it became better defined and measure 17x21 mm now. Better effect on the metastasis in the liver where only two now are barely visible at the CT pictures. My oncologist discussed surgery with the surgeons, and came back today and told me that they think it might be time to remove the tumor. As I understand they don’t expect that the chemo will shrink the tumor much more, and since the chemo has had so good effect on the metastasis in the liver they will try to kill the rest by radiation ablation. But it all depends on what they find after the MR of the liver. Of cause very good news, but also a bit scary. They normally don’t do surgery on stage IV here in Norway, but I think they consider making an exception due to the location of the tumor in the tail, the very good effect of the chemo and the fact that I have Acinar Cell Carcinoma. I guess that I am relatively young (51) and in good shape also help. I would be interested if any of you have some advice, experience or perspectives. The risk to my understanding is that you have to stay of chemo 4-6 weeks before surgery and 8 to 12 weeks afterwards. So the risk is that the cancer can develop during this period, but my oncologist thinks it is likely that it will be stable. But of cause there is a risk. I guess the alternative is to continue with FOLFIRINOX for another 4 cycles, but as I understood it is tuff on the liver and they recommend to keep it as healthy as possible before surgery or radiation ablation.

RE: Stage IV with very good result after 8 cycles of FOLFIRINOX - surgery?

by Sherrietyler on Sun May 14, 2017 10:56 PM

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You sound like you are on a good path and I wish you much success wotht he surgery.  Be strong, be positive, if you are faith based, have that faith. 

Wishing you all the best!

Sherrie Tyler

Seattle Washington

RE: Stage IV with very good result after 8 cycles of FOLFIRINOX - surgery?

by dessmo on Mon May 15, 2017 09:15 AM

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Thanks Sherrie, 

I try to think positive and do the best out of the situation. I think it is very importent to maintain hope, to be able to keep up the fight and also to enjoy everyday life.

RE: Stage IV with very good result after 8 cycles of FOLFIRINOX - surgery?

by pdxjoey on Fri May 19, 2017 07:18 PM

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Hi, I am so happy to hear you been having positive results with Folfirinox. I have just had my first session of Folfirinox 9 days ago. I was warned this type of chemo is brutal, but so far not too bad. What was your experience with it and the side effects? What kind of surgery are your doctors talking about you having? You may have mentioned it already but I can't figure out how to get back to your original message without losing what I have written here. This is how it started for me. I was diagnosed with pancreatic cancer in the head of my pancreas on February 2015 and immediately started taking chemo Abraxane/Gemzsr for 2 months. We then waited 6 weeks and then I had the Whipple surgery performed followed by 3 more months of chemo. I was doing great until 3 weeks ago when a tumor was found in the tail of my remaining pancreas. Fortunately it is still contained in my pancreas and has not metastasize to any other place. I started my first session of Folfirinox that I take every 2 weeks plus go home with a pump for an additional 48 hours. Did you use a pump? I have 5 more sessions to go. So far the side effects have been tolerable. Following these six chemo sessions I will have another surgery to remove the remainder of my pancreas and hopefully any other cancer cells that may be lurking around in it. Has anyone had any experience with having their pancreas completely removed? I am also trying to stay positive and mostly can, but it does get overwhelming at times. I wish you continued improvement and send positive and healing energy your way.

RE: Stage IV with very good result after 8 cycles of FOLFIRINOX - surgery?

by dessmo on Sun May 21, 2017 07:39 PM

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Hi pdxjoey,

Sorry to hear that the cancer came back after surgery. I hope they can operate and that you recover fast.

I had quite heavy side effects of FOLFIRINOX with the first two treatments, but thereafter it has not been to bad. And the side effects has not become worse after 9 treatments. They operated in a port in my chest, so I have been using a Brexter pump for the last 7 treatments. So for me it is 8-9 times at the hospital for the oxaliplatin and irotekan, an then I am sent home when getting the 5FU over 46 hours.

My tumor is located in the tail, so to my understanding this surgery is not so extensive as Whipple operation. I don't have any experience with completely removing pancreas, but I know that you can manage without. But it requires daily medication, I think a artificial pancreas is also under development in USA. Best wishes for your chemo treatment and the surgery!

RE: Stage IV with very good result after 8 cycles of FOLFIRINOX - surgery?

by pdxjoey on Sun May 21, 2017 08:07 PM

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Thanks for your reply dessmo. It helps to kinda know what to expect. These chemo treatments feel differently than the Abraxan/Gemzar. I feel more tired, anxious and gloomy. I guess I need to get my attitude readjusted beacuse we both know having a more positive attitude is better everyone involved. Take care.

RE: Stage IV with very good result after 8 cycles of FOLFIRINOX - surgery?

by BenFranklin on Fri Jun 16, 2017 01:35 AM

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Greetings dessmo,

Any updates my friend?  

RE: Stage IV with very good result after 8 cycles of FOLFIRINOX - surgery?

by dessmo on Fri Jun 16, 2017 10:59 PM

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On jun 16, 2017 1:35 BenFranklin wrote:

Greetings dessmo,

Any updates my friend?  

Yes Ben, Will have surgery next Thursday to remove the tumor from th tail of pancreas. I still have the same metastasis at the liver as in December last year, but reduced in size. My medical team recommends to deal width the liver after the tumor is removed, and they are looking into different options. So all in all good news.
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