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Folfirinox - How long / frequency

Posted: Sun Sep 14, 2014 4:17 pm
by Slewis7313
There has been a flurry of Facebook activity over the last week relating to Maggie Watts and the Parliamentary Debate. It is amazing and encouraging to see what has been accomplished as far as visibility of Pancreatic Cancer through this and other initiatives.

Through all this activity, I have become aware of and joined a Facebook group called 'Families in Support of Pancreatic Cancer Awareness'. They are a merry band of around 1000 sufferers and carers who obviously support each other very much in line with this forum.

They have put me in touch with a gentleman in the USA who is in a similar position as myself, but with some serious Folfirinox treatment under his belt. He, like myself was diagnosed with inoperable Pancreatic Cancer in 2012 and has had 34 cycles of 'The Fox'. I suggested this might be a record, but he is aware of someone on their 42nd cycle! Interestingly enough, he did 12 cycles of 2 weeks and was doing so well that they moved him to a 3 week cycle and after 22 of these, he is still doing really well. This is all very encouraging and interesting with regards to the 2 week versus 3 week regimes. He is going to keep me updated on progress, which I will share with you all as things move forward.

Take care all

Steve
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Re: Folfirinox - How long / frequency

Posted: Sun Sep 14, 2014 4:24 pm
by sandraW
Thanks for that Steve, take care sandrax

Re: Folfirinox - How long / frequency

Posted: Sun Sep 14, 2014 4:30 pm
by Cathy
Hi Steve

I remember last year Kate (KATB), Julia's daughter said that she was following someone on twitter who had had over 40 cycles of folfironox in the US. He was still doing well.. This would have been well over a year ago. I'll see if I can find that post.

Cathy xx

Re: Folfirinox - How long / frequency

Posted: Sun Sep 14, 2014 6:05 pm
by SueH
Hi Steve

Wow that's a lot of the 'fox'. My husband had 22 on a two weeks cycle. We did ask about going on to a three week cycle but his oncologist was against it. He did very well on it until he had to take a 5 or six week break. He was rushed into hospital with what they eventually diagnosed as diabetic ketoacidosos!! He was not previously a diabetic so they thought it was a bad chemo reaction for the first three days. Luckily his blood sugar was eventually checked and it was off the scale. Anyway after the break the tumour markers started to rise as his cancer had become resistant to the chemotherapy. Up until then it had worked wonders. The hospital he was treated at now regularly tests all PC patients for diabetes. I often wonder how much longer he could have stayed on the fox if he had been tested regularly.

Good job on the TV.

Sue

Re: Folfirinox - How long / frequency

Posted: Sun Sep 14, 2014 7:24 pm
by Didge
they do seem to have a more robust and proactive approach to treatment in the US. Whether that is because the insurance companies are paying for it I don't know! Here they seem to say (if you're lucky), ok you've had however many cycles, you appear to be in remission. Off you go and come back for a scan in 3 months etc. I have also heard of people in the US who on asking how long they could be on gemcitabine for were told 'forever' and were still on it (and alive!) 4 years later. One does wonder what dictates the decisions of our oncologists here.....

Re: Folfirinox - How long / frequency

Posted: Sun Sep 14, 2014 8:59 pm
by LMD
Thank you for sharing that Steve... I'm going to look on Facebook now too.

Re: Folfirinox - How long / frequency

Posted: Sun Sep 14, 2014 9:17 pm
by J_T
Hi Steve, Cathy is correct, Kate and I found Merv Hanson from Seattle. He was diagnosed in 2011 and as at May 2013 was on cycle #42 of Folfirinox. Sadly he died in December 2013.

If you google his name, you should find some information. I think he had a blog you can register too https://www.caringbridge.org/signin

Julia x

Re: Folfirinox - How long / frequency

Posted: Sun Sep 14, 2014 9:47 pm
by Slewis7313
Thanks Julia, I'll check the link tomorrow.

Steve
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Re: Folfirinox - How long / frequency

Posted: Mon Sep 15, 2014 12:05 am
by SusannaUK
Hi Steve,

Thank you for sharing this with us. It's good to hear that there are people who had that many Folfirinox and still doing well. Gives us hope.
Your TV interview was brilliant.
Take care,
Susanna x

Re: Folfirinox - How long / frequency

Posted: Fri Sep 19, 2014 1:28 pm
by jimharding100
Hi Steve

I had also found info about Merv via a bit of google searching a while ago, he had become a bit of a personal hero having undergone so many Folfirinox treatments! I wasn't aware he had passed away. From his blog it seems like he had a brilliantly positive attitude.

I have had 16 cycles now. My oncologist has the view that while it is working we shouldn't take any breaks. There was a period where it ended up being every three weeks rather than two, due to platelet counts being too low, but I seem to be tolerating every two weeks at the minute.

I haven't noticed too much cumulative impact of side effects really. I more or less feel tired on days three to five/six and this has been the same since the start. I'm still lucky enough to be working more or less full time, and once I'm past day six I feel generally very well. I appreciate everyone seems to respond to treatment very differently and know I'm very fortunate that I seem to have tolerated it well to date

Good luck to everyone going through Folfirinox (or anything else!)

Jim