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Preparation Suggestions for Folfirinox Chemo

Preparation Suggestions for Folfirinox Chemo

Posted by MM58 on Jan 8, 2021 10:33 am

Hello, 
I am a new member recently diagnosed with Stage IIB Pancreatic Cancer.  I will be starting chemo next Wednesday with a plan to continue for 12 sessions (every two weeks) and I would appreciate any suggestions on how best to prepare.  My caregiver (finance) will be working during weekdays so I will be home by myself recuperating. 

Re: Preparation Suggestions for Folfirinox Chemo

Posted by Boby1511 on Jan 8, 2021 8:05 pm

MM58‍ 
hi there,
What type of chemo? lol (It's in the name! - gez)
I had a lot of fatigue with chemo. Plan to rest.
Plus there are the pre-chemo drugs.
I took steroids which brought energy and some road rage.
Wishing you well with your treatments.

Re: Preparation Suggestions for Folfirinox Chemo

Posted by Helentess on Jan 9, 2021 11:14 am

MM58‍ 

I don't have first hand experience, but my close friend underwent surgery and chemo ln 2019. The partial removal of her pancreas made her diabetic.
So she had to meet with a nutritionist to discuss her diet, what foods to eat, monitor blood sugar, and insulin. I don't knw if that applies to you.

She also made the nurses aware that a pre-chemo drug Benadryl contains sugar & affected her blood sugar levels during and after chemo.

Her biggest problem was eating properly, and being very tired and fatigued after chemo. During the last half of her sessions, her blood counts became very low and took longer to rebound. After her 7th chemo, she needed injections to help with blood counts. After discussions with her doctors, she stopped chemo after 7th.. It was her decision as she very weak and not recovering enough to continue chemo.  She had a CT scan and was declared cancer free. She had another CT scan in 2020 and again is cancer free.

As a side note, she also lost her hair from the chemo drugs. She was given 2  types of chemo drugs. One was a IV infusion at Cancercare & the other was a  drug in a bottle that she took home for 72 hours. Sorry I don't know the names of drugs.

Your cancer team should have given you info on the drugs and side effects.

Hope this helps. Good luck on the treatments. 

 

Re: Preparation Suggestions for Folfirinox Chemo

Posted by Lacey_Moderator on Jan 10, 2021 12:17 pm

MM58‍ 

I'm glad you reached out. I hope your treatment plan works well for you.

I'd like to introduce you to islandgirl2020‍ who was prescribed the same treatment. Islandgirl can you share how you're doing?

I also found this drug fact sheet that I hope you find helpful: FOLFIRINOX Patient Information | Cancer Care Ontario. 
Also here is some additional info about Chemo for Pancreatic cancer from our website: Chemotherapy for pancreatic cancer - Canadian Cancer Society

One of the most important tips I have seen shared by members over the years is track your symptoms and share them with your health care team. Many times adjustments can be made to treatment or medication to help with side effects can be prescribed. 

Wishing you well this week,
Lacey

Re: Preparation Suggestions for Folfirinox Chemo

Posted by islandgirl2020 on Jan 10, 2021 2:17 pm

Hi, I have been on Folfirinox since Sept 1 - Pancreatic Cancer was determined July 10th.  My tumor was operable but we needed to shrink it away from a vein so I did 7 rounds and then had surgery to remove 80% of my pancreas, spleen (since it was lower pancreas they do that), 1 adrenal gland and a couple of lymph nodes.  I am in recuperation mode right now and don't start chemo until February again for my last 5 rounds (total 12).  This regimen works.  In the 7 rounds of chemo I had since september it shrunk my tumor from 2 cm to 2 x 1.5 cm and shrunk it enough away from the vein to do surgery.  It is fairly brutal though - I didn't lose my hair although it is constantly thinning.  These drugs don't always take your hair like some others.  I am allergic to 2 of them as had reactions while in chemo but they stay the course and fill me full of antiallergy meds and lots of dexamethasone before my treatments.  So day of treatment 3 drugs then takehome bag for 2 days for the 4th(fluorouracil-not allergic).  I usually feel pretty good until the "baby bottle" is taken off and the day after that is my worst of the cycle.  Oxaliplaten has the most side effects.  You can't eat ice, drink cold things, pickup ice (use oven mits) as it immediately feels like knives stabbing you.  I put a jug of water on the counter and that is used only for me - room temperature.  I use the orange gatorade that is in the can and mix it up to add a few calories and electrolites for every chemo round.  If you live where it is cold your face can freeze up too so be sure and have a great coat and scarf to wrap your face in.  Also wear gloves even when it is barely around freezing, it will cause you pain otherwise.  I also expect that for 2-3 days I can hardly eat anything then after that I calorie load.  If I can barely eat anything I do use protein shakes and try and stick with protein like eggs, cheese and chicken.  Force yourself to eat. You can't afford to lose weight.  My chronic fatigue didn't get bad until round 5 then hit me like a ton of bricks.  I could barely walk 2000 steps a day.  At first hubby was wanting to hover over me but realized very quickly just to let me rest, there is little he could do other than bringing me liquids and making supper when I can't.  Your first round you might want someone around you but after that you learn to deal with it on your own.  I am no expert, only know my own experience but even though Folfirinox is one of the toughest regimes of chemo - it works.  Even if you are allergic have them carry on - again, it works, I am proof.  I have an electric blanket that helps me keep warm, your body doesn't seem to be able to keep your body temperature where it should in chemo.  Also - buy 2 thermometers (one for backup) and a blood pressure cuff, you will need them.  As they say, if you hit 38 degrees drive straight to the hospital.  Good luck to you - ask questions if you need to :)

Re: Preparation Suggestions for Folfirinox Chemo

Posted by islandgirl2020 on Jan 10, 2021 2:30 pm

PS the tip about tracking your symptoms is great - I had a calendar and wrote down every cycle what was happening (diahrea, need to take anti-nausea meds).  This allowed me to determine I was actually having a terrible reaction to one of my anti nausea meds (Metonia) which was worse than the chemo itself.  I told my GPO and he quickly changed me to another which has no side effects for me.  That way every cycle I knew what to expect on a certain day.

Re: Preparation Suggestions for Folfirinox Chemo

Posted by MM58 on Jan 10, 2021 3:10 pm

Thank-you so much Island Girl for sharing your direct experiences. It is wonderful to hear about your success story. It inspires me to continue to think positively. I have gone through the guidance on this, however, hearing your first hand experience is worth gold!  I will post a note again after my first session and I hope we keep the conversation going :).