A forum to focus on treatment related issues and side effects from treatment

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Treatment break

Postby Theresa Upton » Wed May 22, 2019 7:44 pm

Hi, I have just completed 13 rounds of folfirinox after being diagnosed with stage 4 PC and liver mets in October 2018. I have been accepted onto a immunotherapy trial and will continue with chemo until the trial is complete, this should involve approximately 4 more sessions. My oncologist has been talking to me about having a chemo break which I know I would benefit from but I am also very worried that the tumours will come back if I am left with no treatment. I have had an excellent response to folfirinox, my main tumour is 80% smaller, my liver mets have significantly reduced, I have not lost any weight and I am well in myself. Has anyone any thoughts/experience around this?

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Treatment break

Postby PCUK Nurse Jeni » Thu May 23, 2019 11:12 am

Hi Theresa,

Thanks for your post - this is really great news for you. Well done on all you have gone through to get this far. You are a true inspiration Theresa.

So, is the trial alongside the Folfirinox then? Sounds interesting.

I think its always the same for folk who are about to have a chemo break - you will be followed up every 3 months, maybe even sooner if you are on a trial follow up?
It is hard to go from being on chemo and at the chemo unit regularly, to having lengthier breaks - it feels daunting, and can feel strange.
We have experience of this as nurses - folk always used to find those times when they finished chemo and had a break unnerving - however, once you have a contact number for your specialist nurse, and you are aware that you can ring at any time, it puts your mind at ease.

And you are right, time off chemo and away from hospital will do you the world of good. Its positive news Theresa! I hope that you can enjoy the break!

You can always phone or email us if you have any worries or concerns.

Take Care Theresa,

Kind regards,

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

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: Treatment break

Postby Theresa Upton » Thu May 23, 2019 3:23 pm

Thank you Jeni, I will keep you updated on how things go not only with the break but also with the trial.

dw010
Posts: 6
Joined: Mon Apr 22, 2019 8:20 pm

Re: Treatment break

Postby dw010 » Fri May 24, 2019 8:11 am

Hi Theresa, great news on your successful chemotherapy and I wish you well on your trial, looking forward to following your progress.

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: Treatment break/trial

Postby Theresa Upton » Tue Jul 30, 2019 7:34 pm

Just a quick update. Just had chemo number 17 and all is going well, all tumours significantly reduced. I am still waiting to start the trail, there have been a few set backs, trial suspended, scans out of date but hopefully I will get my first vaccine on the 12th August and the 2nd 4 weeks later, I will then begin my long awaited chemo break.

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Treatment break

Postby PCUK Nurse Jeni » Thu Aug 01, 2019 3:41 pm

Hello Theresa,

Thanks for your update, and great news about the response to chemo - amazing!

It's great to share some good news which can give people hope.

What is the name of the trial Theresa, do you know? I can imagine that you are really looking forward to a break from chemo.

I hope the vaccine does equal "magic"!

Take care Theresa,

Jeni.

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

Theresa Upton
Posts: 62
Joined: Thu Oct 11, 2018 4:39 pm

Re: Treatment break

Postby Theresa Upton » Fri Aug 16, 2019 10:20 pm

Thank you Jeni. First vaccine was administered on Monday and round 18 of folfirinox was yesterday. I will have the second vaccine ACIT-1 on the 09th Sept and my last chemo on the 29th August. After the 29th I will have my PICC out and then I have a few holidays booked. Hopefully I will get a few months or even more before the tumours start to grow and then it will be chemo again. I am looking forward and will be searching for new trials. I hope the vaccine equals magic for me and for everyone else who is suffering from this very tricky cancer.

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Treatment break

Postby PCUK Nurse Jeni » Thu Aug 22, 2019 11:49 am

Hi Theresa,

This all sounds so positive!

I am so pleased to hear you have some holidays booked - you thoroughly deserve them!

I hope that you have a fantastic time!

Best Wishes from all the nurses here!

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