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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Nighean
Posts: 6
Joined: Mon Jan 06, 2020 6:55 pm

Newly diagnosed - struggling with chemo

Postby Nighean » Wed Jan 08, 2020 7:24 pm

HI,

I was recently diagnosed (November) with non operable pancreatic cancer metastazied into the liver. I was started on FOLFIRINOX in December and after the second cycle I am really struggling as I was badly hit with nausea.

The pills from the GP are keeping it at bay but I am struggling to eat enough to stablise my weight which means the third cycle has been delayed.

Anyone got any ideas on what might work to stop the downward spiral. Someone suggested Cannabis oil, but I understand that might interfer with the chemo drugs. Looking for any suggestions beyong the little and often that just isn't working for me.

Thank you

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

Re: Newly diagnosed - struggling with chemo

Postby PCUK Nurse Jeni » Thu Jan 09, 2020 10:34 am

Hello Nighean,

Thanks for your post on the forums, and so sorry to hear that you are struggling with nausea and eating at the moment.

I will email you directly regarding this if thats ok?

Kind regards,

Jeni.

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

Nighean
Posts: 6
Joined: Mon Jan 06, 2020 6:55 pm

Re: Newly diagnosed - struggling with chemo

Postby Nighean » Thu Jan 09, 2020 12:09 pm

Yes happy to take any advice how ever it comes

thenextmrsclooney
Posts: 3
Joined: Sun Dec 29, 2019 7:26 pm

Re: Newly diagnosed - struggling with chemo

Postby thenextmrsclooney » Fri Jan 10, 2020 12:54 pm

I was the same for the first 4 cycles - the 4th being the worst. I now have an anti-sickness drug to take orally (one tablet) before I go into the hospital. This lasts for about 5 days but I can't remember the name of it. I then have intravenous steroids and an anti-sickness drug through my PICC line 30 minutes before the treatment starts. Also they have reverted back to 1 and 1/2 hours to put in the irinotecan instead of 1 hour. That is the drug that makes me feel the most sick. Cycle number 5 was a lot better with this approach. Hope your next treatment goes better than before. Best of luck - stay positive

Nighean
Posts: 6
Joined: Mon Jan 06, 2020 6:55 pm

Re: Newly diagnosed - struggling with chemo

Postby Nighean » Sat Jan 11, 2020 3:54 pm

thank you. I will ask about a preventative before I start to see if it can help.

Nighean
Posts: 6
Joined: Mon Jan 06, 2020 6:55 pm

Update - struggling with chemo - be kind to you

Postby Nighean » Thu Feb 20, 2020 8:39 pm

So here is the post I wish I had read right at the begining of my chemo journey.

Its alright to feel awful, to have days sitting around doing nothing but watching bad daytime tv and reading magazines.

Don't make my mistake of reading the blogs of those who sail through chemo writing books or carrying on working and assume thats how it should be, lots of people can do no more than sit and watch TV for days on end, especially at the bottom of the chemo cycle when your blood count drops like a stone and you wonder if you can face it all again next time.

Learn to lean on the team around you; MacMillan, Pancreatic Cancer Org nurses, Maggies Centres, GP, district nurses, family, friends and neighbours, anybody, everybody. Use them all because this is when you need to learn to lean on people to help you survive.

Learn to say no, and to let others take the weight. If you're not fit to talk send people away and let others answer the phone.

Be nice to yourself, somebody has just stolen your future, and in my case my immediate present as I'm not fit for work and that was such a massive part of who I was, so of course thats going to take time to get your head around. That bucket list you had for the next decade or so has to be ditched, but it is fine to grieve for the list you had before and to take your own time to create another one.

Remember that the chemo team will do their utmost to get you through the cycles with as little grief as possible, there will be tweaks to help the side effects, every cycle will be different but things will improve from that horrendous cycle. Tell them how you feel, help them to help you by letting them know the side effects you are having, ask the questions about what they can do to help.

Chemo is never going to feel great, and thats okay. There will be days when you can do things and days when you can't, and that's okay.

Celebrate the victories, even if, as today for me, its just getting dressed. Enjoy the 'up days' when they happen. If your cycle settles and you know when the good days are coming make plans, otherwise you'll need to learn to be spontaneaous.

Hope this helps someone like me. I felt so low because I couldn't get why I felt so awful when others appeared to be sailing through the chemo cycle. Really I don't think anyone sails through, some of us just get hit harder than others and like getting cancer in the first place you have no idea why you and no idea why your body will react as it does to the drugs. Best you can do is cut yourself some slack and be kind to you

memorris50
Posts: 4
Joined: Tue Dec 03, 2019 11:37 am

Re: Newly diagnosved - struggling with chemo

Postby memorris50 » Sun Mar 29, 2020 5:02 pm

Nighean, thank you so much for your post. I needed to be reminded of this. Struggling still with diarrhoea after second round of chemo, though not so bad as first cycle due to reduction 70% dosage and other tweaks by the team. Fatigue is pretty bad too. I am taking things one day at a time and hoping we can find a modification of Folfirinox that my bod can cope with. Good luck one and all