A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Mo2020
Posts: 2
Joined: Tue Jun 23, 2020 11:51 am

First folfirinox experience

Postby Mo2020 » Thu Jun 25, 2020 4:12 pm

Hi to everyone on here. I am new to the forum and am struggling a bit to find my way round.
I have found all the comments on here really useful to me and certainly very inspiring.
I am really looking for a bit of advice. I was diagnosed with PC in April and was lucky enough to be able to have Whipples Surgery, which happened within a month. I am now 5 weeks post surgery and starting to recover. My biopsy results were very good, showing the cancer had not spread. However, the oncologist has recommended i have chemo, Folfirinox, to lessen the risk of it returning. Given my situation (I know I am very lucky that my PC was caught so early) I am reticent about having Folfirinox. To be honest I think I am really quite frightened as I was quite ill for some weeks after the Whipples.

I was wondering if anyone else has had Folfirinox following Whipples Surgery and the effect it had on them. I don't really understand about the PICC line, does it stay in for the full 6 months? How long do you actually spend in hospital every 2 weeks? Any info that anyone could give me would be useful.

My oncologist has suggested I spend some time thinking about it and i have another appointment in 3 weeks, but the more I think about it the more uncertain I get.

Any feedback would be really welcome and can I just say how much I admire you all with your positive attitudes and great posts.

PCUK Nurse Jeni
Posts: 1106
Joined: Mon Jun 14, 2010 1:30 pm

Re: First folfirinox experience

Postby PCUK Nurse Jeni » Fri Jun 26, 2020 10:33 am

Hello Mo2020,

Welcome to the forum and thank you for your first post.

In order to maximise your replies, and to ensure the post is visible, I have moved it to its own topic, which means the thread will be replies to your post alone.

Its good to hear that you have been able to have a Whipples operation Mo, and that it all happened swiftly. Such positive results from surgery too.

I am sorry to hear that you were not so well after the Whipples - its quite an involved operation, not without its complications at times, but well done for getting over this - I hope that your recovery continues to improve day by day.

Mo, the PICC line stays in for the duration of the treatment. It generally goes into the upper arm, mostly the inner arm. Sometimes, it goes into the chest, but this is called a Hickmann line. You can see some images of these here:

https://www.google.com/search?q=picclin ... GB841GB841

The chemotherapy is given as an outpatient so you don't actually stay in hospital Mo. You can expect to be at the hospital for several hours for the treatment (6 hours at least), and then you go home with a pump attached to your line for 48 hours. This is portable so can be put into a bumbag, or in a pocket. It is removed either by a district nurse or back at the hospital.

I am sure there will be others here who will answer from a personal experience point of view in relation to folfirinox.

I hope this helps?

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Mo2020
Posts: 2
Joined: Tue Jun 23, 2020 11:51 am

Re: First folfirinox experience

Postby Mo2020 » Fri Jun 26, 2020 8:46 pm

Hi Jeni, Thank you so much for that info. Every little bit helps.

Hopefully I will get some replies from people with direct experience with the next few weeks which may assist me in making my decision on the way forward.

suewood
Posts: 1
Joined: Fri Jul 17, 2020 9:56 am

Re: First folfirinox experiencen

Postby suewood » Wed Jul 22, 2020 9:30 am

Hi Mo2020, I was diagnosed in August 2019 I had a 2 cm lesion in the head of the pancreas. I had a Whipple operation in September. The first CT scan showed all the surrounding tissue as clear but they found some activity in one of the 26 lymph nodes they took out, I was advised folfirinox for six months but it was my choice I decided to go ahead, I was very sick after the first session so the consultant gave me strong anti sickness tablets and steroids and I sailed through the rest of of the cycles. I was given the all clear in May.
Unfortunately my darling husband was diagnosed with pancreatic cancer too in December 2019 his was 3cm in the head of the pancreas not operable as too close to a portal vein they tried to make it operable with folfirinox chemo for 6 months to shrink the tumour but the tumour did not respond. He has been so very poorly this past six months with blocked stents and a total loss of appertite it has been a hideous time for him and us us a family. He is due to come home from hospital on Friday so we can look after him at home. We are devastated as this was the beginning of our retirement years we are heartbroken that we won’t be together for are final years and question what we did wrong to deserve such a cruel fate - very angry and bitter does not begin to explain how we feel.
suewood

Hopeforcure
Posts: 1
Joined: Tue Jul 28, 2020 7:43 pm

Re: First folfirinox experiencen

Postby Hopeforcure » Wed Jul 29, 2020 3:18 pm

suewood wrote:
> Hi Mo2020, I was diagnosed in August 2019 I had a 2 cm lesion in the head
> of the pancreas. I had a Whipple operation in September. The first CT scan
> showed all the surrounding tissue as clear but they found some activity in
> one of the 26 lymph nodes they took out, I was advised folfirinox for six
> months but it was my choice I decided to go ahead, I was very sick after
> the first session so the consultant gave me strong anti sickness tablets
> and steroids and I sailed through the rest of of the cycles. I was given
> the all clear in May.
> Unfortunately my darling husband was diagnosed with pancreatic cancer too
> in December 2019 his was 3cm in the head of the pancreas not operable as
> too close to a portal vein they tried to make it operable with folfirinox
> chemo for 6 months to shrink the tumour but the tumour did not respond. He
> has been so very poorly this past six months with blocked stents and a
> total loss of appertite it has been a hideous time for him and us us a
> family. He is due to come home from hospital on Friday so we can look after
> him at home. We are devastated as this was the beginning of our retirement
> years we are heartbroken that we won’t be together for are final years and
> question what we did wrong to deserve such a cruel fate - very angry and
> bitter does not begin to explain how we feel.
> suewood

Hi Sue
Sorry to hear about your husband , I’m not sure if cybeknife treatment would be an option for him
Take care
H x