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Hayley
Posts: 5
Joined: Sat May 28, 2016 6:54 am

Success with Folfirinox?

Postby Hayley » Tue Jul 26, 2016 9:33 pm

Hi everyone

My dad has locally advanced pancreatic cancer with migration around the superior mesenteric artery (SMA) so we were borderline inoperable. We were not eligible for the PRICKLE trial for Abraxane due to the close proximity to the artery and have started Folfirinox. Dads had 6 sessions now and had a CT scan today to see if it has made any change. Due to the harsh nature of this drug the Oxiliplatin was modified to 80% which made the last 4 sessions of chemo much more bearable for him in terms of fatigue. I am just wondering whether anyone knows how successful Folfirinox is in terms of stabilising the tumour? how much progress we should expect? and whether anyone has been able to have the tumour removed due to adequate shrinkage with folfirinox? Anyone had any good stories with Folfirinox? We will most likely continue with the 12 sessions (so another 6 chemo's if the scan show positivity). We are hoping!!!

I keep hearing how good Abraxane is and it's frustrating we were not eligible for the trial as I hear the tumour shrinks well. The consultants tell us that there is no direct comparison between the two drugs in terms of superiority (Folfirinox compared to Abraxane). I wonder if anyone has paid for it privately but I have heard you would need to re-mortgage your house! We have been told best plan is to wait and see and take each day as it comes. Can anyone shed some light on this? Thanks!

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Success with Folfirinox?

Postby Dandygal76 » Tue Jul 26, 2016 9:52 pm

Hi Hayley, I cannot respond loads right now but do you have more specific detail... borderline inoperable... is that stage 2b with artery involvement? I assume you are waiting on today's results? Don't worry over decisions too much right now, get the results and hopefully he will be out of borderline and in surgery. When do you get the result? I have heard negative and non response, stable disease and people having shrinkage to be operated on. I know it is so so painful right now but you need to wait on the results to make your next move. From what you are saying I am sort of guessing the tumour is in the head... do you know how big it is? I am hoping your dad will become operable and post either way if not. I get the Abraxine thing but have not costed it myself as dad is on a trial. There are other routes if he is borderline but more detail would be useful. Ruthus who NHS would not operate on just had successful whipple abroad and there are other options. x

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Success with Folfirinox?

Postby Veema » Tue Jul 26, 2016 10:26 pm

Hi Hayley

My husband was considered inoperable initially because of the location of the tumour in relation to blood vessels. He had 6 cycles of folforinox, which shrunk the tumour considerably enabling him to have the whipples, which he coped well with. We've been unlucky in that the cancer has returned in other places and after a total of 24 cycles of folforinox, it seems to have recently stopped working for him.

Fingers crossed for you...

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Success with Folfirinox?

Postby Wife&Mum » Wed Jul 27, 2016 12:05 am

Hi Hayley

Welcome to the forum but I'm very sorry to hear about your Dad's diagnosis.

My husband was treated with 6 cycles of Folfirinox after a diagnosis of locally advanced PC with SMV/portal vein involvement. The Folfirinox was followed by chemo-radiotherapy. The treatments were very successful and as a result he became operable.

There's a bit more detail in the first post of my thread here: http://forum.pancreaticcancer.org.uk/vi ... 798#p21821

Good luck for the scan results.

W&M x

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Success with Folfirinox?

Postby Didge » Wed Jul 27, 2016 12:07 am

If your dad responds to folfirinox is often works very well indeed and I believe is better than abraxane in terms of results. Abraxane is not so harsh and I think that is why it is sometimes preferred, if the patient is not deemed suitable for folfirinox. That is my understanding but others may have better info. Certainly there have been many cases of patients becoming operable after chemo. You can find some on this website in the real life stories x

Hayley
Posts: 5
Joined: Sat May 28, 2016 6:54 am

Re: Success with Folfirinox?

Postby Hayley » Thu Jul 28, 2016 10:08 am

Thanks everyone! We have been told to expect a wait of 2-3weeks for the report. We have a clinic review next week and so we may find out more. I hope it doesn't take too long as it will delay further chemo if that's what is needed and listening to other people a wait is not ideal. Yes I am best to wait, but thanks for the hope that Folfirinox has made it operable in some cases. Fingers crossed. We have never been told the exact size but I will ask this at the next scan. We were only told it was a T4 Adenocarcinoma and it was in the neck of the pancreas.

PCUK Nurse Dianne
Posts: 271
Joined: Tue Aug 14, 2012 3:29 pm

Re: Success with Folfirinox?

Postby PCUK Nurse Dianne » Tue Aug 02, 2016 3:52 pm

Hi Hayley,

I note you have had some great answers from other forum family members which is excellent. I also thought it might be helpful to hear some perspectives that we do experience here on the support service. There are mixed results from patients with respect to both Folfirinox and Gem/Abraxane, as you will find with any chemotherapy that we are unable to predict who will respond well and/or tolerate well the individual chemotherapy agents. From a perspective of overall survival, Folfirinox is stated as having an edge on Gem/Abraxane in the current setting.

We have heard some amazing stories from patients who have had Folfirinox and been fortunate to have their tumour 'downstaged' and then proceed to surgery as you have heard from others. I should add that Gem/Abraxane was initially instituted for Metastatic pancreatic cancer, so that which has spread outside of the pancreas, and not in locally advanced, however as you mention this is being offered in eligible patients in the PRICKLE trial. I am sorry to hear that Dad was not suitable for this, however hope that Folfirinox has proven beneficial. I am sorry that you have been told there is a 2-3 week wait for CT report, I am sure this should be available at the next appointment as Consultants are able to obtain an interim report before a more formalised, lengthy and official report. I do hope that is helpful.

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK support team
Free phone: 0808 801 0707
email: support@pancreaticcancer.org.uk

Hayley
Posts: 5
Joined: Sat May 28, 2016 6:54 am

Re: Success with Folfirinox?

Postby Hayley » Thu Dec 29, 2016 12:01 pm

Hey everyone. I just wanted to thank you for your responses and to update you to give hope to others. My dad had 12 cycles of Folfirinox and it successfully shrunk the tumour away from the SMA and other arteries in order to proceed for the Whipples operation. My dad had the Whipples in December and is now recovering at home. The histology report showed that the amazing surgeon has managed to remove the tumour successfully but has now suggested futher Chemotherapy. I was just wondering if anyone else has been in this position? Apparently there is not much evidence out there so it's hard to know what to do (especially as dad is quite frail and has lost weight again), but since we have got this far do we continue with chemotherapy which seems the logical step?? We are awaiting an oncology appointment to discuss in clinic the exact plan but wanted to know if anyone has had any similar experiences to share?? Also I want to give hope to others who are struggling with the Folfirinox regime! Keep going...it worked well for us! xx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Success with Folfirinox?

Postby Didge » Thu Dec 29, 2016 12:09 pm

I would have the chemo. You will have to wait a while after the op anyway so hopefully your dad will get stronger. My partner had follow up chemo after his op but couldn't tolerate it so they stopped and didn't offer him another type as he was officially in remission at that point. 5 months later it was back in the liver. Ultimately your dad's choice of course. Good luck x

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Success with Folfirinox?

Postby Ruthus » Thu Dec 29, 2016 1:40 pm

Wow Hayley what fantastic news!!! I'm so pleased the Folfirinox successfully shrunk the tumour away from the SMA and a successful whipple has been performed. I am sure your family are thrilled. It maybe useful to read my thread or story about post whipple treatment although I unfortunately developed Mets in my liver which I've had ablated. I'm currently taking gemcap and this is a much easier chemo regime to tolerate.

I would recommend post whipple chemo. Good luck Ruth xx

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Success with Folfirinox?

Postby Veema » Thu Dec 29, 2016 3:33 pm

Hi Hayley...this is exactly what happened with my husband...did histology show any signs of tumour in localised lymph nodes? Nige had 4 out of 19 lymph nodes with signs of tumour, so he had the chemo after whipples as a sort of mopping up exercise...it worked for a bit, but then came back in lungs then liver and lining of the abdomen. The chemo did give us an extra 12 months or so, so worth it in my opinion as Nige tolerated it well. He had to wait six weeks after surgery to restart it. Make sure your dad is super careful as incision Al hernias are common after the whipples and Nige's was huge.

So pleased that he's got this far though...fingers crossed for you.

Vx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Success with Folfirinox?

Postby Dandygal76 » Sat Dec 31, 2016 7:23 am

Hi Hayley.. that is such wonderful news and must have been the best Christmas present ever. I follow a lot of stories online but especially around nanoknife open surgery in the US which is also a very demanding operation. I would strongly recommend that you start checking with your dad oncologist now what chemo routine your dad will be offered. If it only gemcitabine then I would not be too happy but I still see many oncologist do this. You need to do your own research but I would be asking for gemcitabine plus capacetabine as a min request. If his performance status is good in a while and he recovers from the surgery well then Folfirinox would be what I would push for. However, folfirinox can be a brutal routine for some and I am on my phone and difficult to read back and see how he coped. GemCap I have seen given to plenty of people with poor performance status if it is a problem for Folfirinox. If you try and bottom this out now about the when's and what's because you have time to have considered evidenced debate with them now and a chance to get a second oncologist opinion. I obviously do not know your dad's other medical history but I assume it is reasonably okay if he got the op but this is what I would do if it was my dad. Gem on its own does not have such good results. X

Hayley
Posts: 5
Joined: Sat May 28, 2016 6:54 am

Re: Success with Folfirinox?

Postby Hayley » Sun Jan 01, 2017 9:07 pm

Thanks Dandygal76 yes it was the best Christmas present ever! yes dad was on Folfirinox prior to the operation and I assume it will be the same Chemo drug again post op, but will see what the Oncologists say when we meet with them. Thanks for sharing your knowledge much appreciated! X

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Success with Folfirinox?

Postby Dandygal76 » Tue Jan 03, 2017 9:15 am

If they offer just Gemcitabine then I would challenge it. GemCap has a much improved success rate - I am going from memory but I think 34%. I have seen no stats for Folfirinox. I have letters I am polishing off as templates if you do come to need them (I just need to remove peoples names and make them more generic templates). I have saved them under 'why the F can I not have Folfirinox' and 'why the F can I not have GemCap'. So, I think you get the gist of how they could help (they are professional and evidenced letters though so don't be alarmed by my crudeness on here!). There is often a very good reason if they are refused but we like to make them really think about it.

I also would not wait on oncologist appt until just before treatment and after recovery. There is nothing more stressful than being told something you do not want right when you want treatment and 2nd opinions cause delays.

I feel like I am being all negative. The chances are you have a great forward thinking oncologist. It is just my natural state of mind (and knowledge of peoples stories) to think the worst. I am so so pleased your dad got this opportunity and I just want him to have every chance to make a success of the operation. I am rooting for you every step of the way. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Success with Folfirinox?

Postby Wife&Mum » Tue Jan 03, 2017 10:57 am

Hi Hayley

What terrific news for you and your family, I hope your Dad's health goes from strength to strength.

I certainly agree with those above in saying that if post-Whipple chemo is offered, you should take it. Like your Dad, my husband had folfirinox before the op. He also had chemoradiotherapy with Capecitabine, so when it came to post-op chemo we were told that it would be Gemcitabine on its own as he'd already had Capecitabine. I was disappointed as I knew that Gem+Cap has better results than Gem alone. But we were assured that the results aren't that different**. We had a second opinion on this and were told the same.

** the ESPAC trial found that survival was improved if patients were given Gem+Cap rather than Gem alone. The estimated 5-year survival rates were 28.8% vs 16.3% in the two groups.
http://www.ascopost.com/News/41613
But an esteemed oncologist told us that the actual improvement in 5 year survival gained by adding Cap to Gem is probably more modest than the ESPAC trial report suggests as the 5 year survival on Gem alone is usually around 22% (for resected patients) rather than the 16% reported in the trial results. So that's 28.8% vs 22%.