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Folfox - not sure what to expect

D_3John
Posts: 4
Joined: Sep 2019

Hello Everyone, as I've stated, I am new to this process.  I will be starting the treatments on Tuesday and as of yet I have not received any teaching so I really don't know what to expect.  I was told that I will have to have twelve treatments of Folfox and these treatments will include a five hour session and I will have the pump.  I don't know what to eat, I'm not sure how this Folfox will affect me so, any information will be helpful.  

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

Oh how I remember those bewildering feelings at the very beginning. And I had the talk with one of the chemo nurses, it still didn't eliviate the fears or the plain not knowing what to expect. 

Have you had a port inserted in your chest?  They really are wondreful little things - most work like a dream, and save your veins from allot of harsh chemicals. 

I can only share info on how I was treated, but it will probblay be close if not the same. When you arrive at the chemo center, you will be ushered back to either the chemo room or exam room to get your port accessed - or vein, if you don't have a port.  If you do have a port, rubbing the area with Lidocaine gel about half an hour before access, really helps. It's a big needle, so don't look, becasue it looks worse than it feels. 

The chemo nurses are wondreful, and they will hook you up to various bags of chemicals. They will monitor your closley through the whole infusion. If you have any weird sensations, just call on one of those nurses and they can tell you what is happening.  On my first infusion, I had this weird tingling sensation in my throat, which turned out to be quite normal, but was totally scary becasue nobody told me about it. 

Be sure and report any tingling in fingers and hands. Some people have immediate reactions. 

One thing to be aware of is sensitivity to cold. I mean REAL sensitivity, like the feeling you are getting an electrical shock.  The fridge is your enemy and needs to be handled with gloves, winter gloves.  Utensils can also trigger it. Door handles. Anything cool or cold.  And cold sensitivity in the mouth. Cold drinks epecially and some foods will feel like you are putting glass in your mouth. You can also have the sensation of your throat closing up. 

The pump you will take home with you and probably wear for about 48 hours. Some folks sleep with the bag, I used to keep it on the bedside table - it has a long tube - and use a body pillow to keep me from rolling away from it.  While the tube is long, you don't want it pulling on the port. 

I honestly don't think there is much to say that will stop you wondreing non-stop about what is giong to happen, but there are a few 'heads-up' things to think about. 

Everyone reacts to chemo differently, but it is good to get as much info from as many people as possible.   I hope folks pop along soon and share their info, which could be different than mine. 

Good luck.   Stick with us and we'll help you through. 

Tru

 

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

There are two lists below - one focused on Folfox, and one on chemo in general, thus there is some redundancy.  I've created this for friends who've asked, not all of whom had FolFox.

Folfox tips:

 1.    Be sure to get the Emla cream for the port (after the first infusion.)  It makes a world of difference.

 2.    Note:  do note go to an anti-cancer diet that is high in anti-oxidants.  This is one time when your green tea, blueberries and pomegranate are not your friends. I was told no more than 1 cup green tea per day, if I had to have it. Chemo works by oxidizing; anti-oxidants can diminish the effect of chemo. (I can give you the references to MSK about this.) ASK BEFORE TAKING ANY SUPPLEMENTS, herbal or vitamin.  

 3.    The 5FU causes tenderness/breakdown and/or darkening of the skin.  Moisturize hands, feet with Bag Balm (an ointment) or Udderly Smooth(a cream) regularly to avoid cracking of skin.  Also, as this chemo is for the digestive tract, make sure to GENTLY but thoroughly clean after using the toilet.  (The anal fissure I developed was the last straw in my decision to quit chemo; the pain was obscene.  Also note that chemo was somewhat optional in my case.)

 4.    Chemo side effects differ for everyone.  However, keep ahead of the anti-nauseants; once you get sick it’s too late to start. (Not everyone gets sick.)  This chemo may cause constipation and/or diarrhea (or a few days of one followed by the other.)  It constipated me; I had to take colace and senna during my chemo days and for 2 days after.

 5.    Oxaliplatin almost always causes a severe reaction to cold.  Don’t eat or drink anything cooler than room temperature or your throat may feel like it’s seizing up or you’re swallowing glass.  (That will subside.)  Gloves for the fridge; a scarf over your nose and mouth in the chilly weather.  Partner needs to thoroughly warm up the car before you get in.  I also lost fine motor skills, and could tell the instant the temp went below 68F.  I couldn’t button, fasten my seatbelt, etc.  This lasts a few days, but longer each cycle.  Solutions:  use plastic flatware (metal silverware hurts) or chopsticks.

 6.    With Oxaliplatin, there is an uncommon but known side effect of “first bite pain” where with the first bite of food you feel like you’ve been hit in the face by lightening. It wears off after 10 – 30 seconds, and then you can eat normally. I had that, and dealt with it by starting my meals with a pea-sized bite of bread (so that I could get past the pain, and spit it out if necessary.)  Then I could eat normally.  Note:  this is very uncommon, so it’s not usually mentioned regarding side effects.

7.    Neuropathy is a common side effect.  I was told to take B6 (50-100mg 3x/day).  It didn’t help me much.  You can ask about Alpha Lipoic Acid, Glutamine, and Magnesium.  They might give you gabepentin if it gets bad.

 8.    It’s common to be extremely tired, especially starting the 3rd day of the cycle (when the chemo pump comes off.)  

 9.    Start doing mouth rinses (equal parts salt/baking soda – ½ tsp in a cup of warm water) several times a day on the day you start chemo.  Do it every day (every time you walk into the bathroom) at least through the first week of the cycle.  I just did it daily throughout my chemo. This will help you avoid mouth sores.

 10. If you have low blood counts and need neupogen or neurontin, ask about taking Claritin every morning from the day of the shot for the next few days.  This has been shown to minimize bone pain that is a common side effect from these blood strengtheners.

 11. Don’t assume any side effect is normal.  Report everything to your oncologist or chemo nurse – don’t just “suck it up.”  They want to make this as tolerable as possible.  Most people end up having chemo doses cut – they start at the highest for your height/weight, and have plenty of room to cut back while still providing effective therapy.

 

General Chemo pointers

 1. Emla – Ask doctor for a prescription for Emla Cream before starting chemo.  This is a local numbing cream that should be gobbed over your port an hour or so before chemo. This way, you won’t feel the needle stick when they access the port.  (Note:  I used it for both my belly port and my chest port – yes I had chemo directly into my belly.  It is a miracle med!  I never felt any pain.

Use a thick coating of cream (don’t rub it in) covered by plastic wrap or a Tegaderm until chemo.  The nurse will remove it.

 2. Mouthwash – Chemo commonly causes mouth sores.  My onc advised me to rinse my mouth regularly with a solution with equal parts salt and sodium bicarb (baking soda).  I kept a jar by my sink, dumped a spoonful into a cup of water every time I walked into the bathroom, and rinsed at least 4 times a day throughout chemo treatment, not just on chemo days.  I had minimal problems with mouth sores.

3.  Anti-nauseants – if you have any concerns about nausea, and not everyone gets sick, it is important to keep ahead of it.  Ask for Emend for chemo days (and two days more.  It is a 3 day dosage.)  There are a variety of other meds such as Zofran and Ativan.  It is important to keep ahead of the anti-nausea meds, and not wait until you get sick.  Thus, I took Zofran every 8 hours like clockwork during chemo and for a day or so after.  (My treatments lasted 3 days of every 2 weeks.  I expect yours to be one day in your cycle.)

Of note, it has been shown (you can find legitimate research) that ginger supplements enhance the anti-nausea abilities of the meds.  The recommended dosage of ginger is one capsule twice a day.  Supposedly, that works better than either more or less.  I didn’t use ginger – the research came out after I was done with chemo.

4. Claritin (Loratidine) – something currently in research, but recognized by many cancer patients is the use of Claritin if patient is getting neupogen or neulasta injections.  Somehow, Claritin cuts down on the degree of bone pain that results from the stimulation of the bone marrow by these drugs.  It is recommended to take Claritin every morning, starting the day of the injection, and continuing for a few days after.

5. Neuropathy – Ask if neuropathy is a concern with your chemo.  If so, start on Vitamin B6: 50 – 100mg 3x/day to help avoid it (tho it didn’t help me.)  Ask about Magnesium Citrate and Alpha Lipoic acid.

6. Supplements and diet – be sure to tell the dr about any and all meds and supplements.  During chemo and radiation, anti-oxidants can MINIMIZE or counteract the efficacy of the treatments and thus work against you. I can give you links to lectures from Memorial Sloan Kettering Cancer Center’s Integrative Medicine group that discusses and explains this.  While you should eat normally, don’t overdo things like green tea and blueberries, and don’t take supplements of anti-oxidants.

Call doctors or chemo nurses with any and all questions, no matter how small. 

 Alice 

beaumontdave's picture
beaumontdave
Posts: 996
Joined: Aug 2013

Between Alice and Tru, I can't imagine anything was missed, so welcome to the blog, and I hope the chemo goes easy for you.......................................Dave

D_3John
Posts: 4
Joined: Sep 2019

I have taken notes and I just wanted to let you guys know how much I appreciate you taking the time to respond to my inquiry.  Thank you all so much for the information.  My prayers are that everything go smoothly too as I embark on this journey.   Thanks again.

Annabelle41415's picture
Annabelle41415
Posts: 6212
Joined: Feb 2009

I'm sorry that you had to join the group, but glad that you found us.  We are a great group of people that can help you get through this.  The above information is very accurate and remember that everyone handles it differently.  If you aren't sure if something isn't right, don't hesitate to call your doctor.  Once in a while my eyes would twitch for several seconds too.  The steroids might make you wired so don't be surprised if you get a burst of energy while on the pump.  Wishing you well during treatment and let us know how Tuesday goes.

Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 508
Joined: Jul 2016

Good luck with your treatment John.

harleywiz's picture
harleywiz
Posts: 51
Joined: Aug 2014

i have been through the mill and and what i have read looks like their advice is correct   been fighting 6 years now never in remission 6 diffrent chemos,radiaion and 11 suriges

stage 4 and in my liver now its beewn a fun joueney to see how many days in a row i can vomit after chemo but im still here lol

AnneO1965's picture
AnneO1965
Posts: 50
Joined: May 2019

Only thing I can think of that hasn't already been mentioned is that I was told to eat a high protein diet.

D_3John
Posts: 4
Joined: Sep 2019

Well I was able to have my first chemo treatment and as you guys stated the nurse was very nice and informative.  I was given medication for the nausea so I handled it pretty good that time.  I was suppose to have my 2nd treatment today and I was unable to have it because my WBC was low and my potassium was low.  As a result I've been told that I have to wait til next week to have my blood tested again and hopefully they will be at a level that will allow me to take the Chemo.  No that I'm jumping for joy to take it but I would love to get on the other side of this.  Has anyone had their blood numbers so low that they could not take the Chemo and if so what did you do?

Trubrit's picture
Trubrit
Posts: 4851
Joined: Jan 2013

I had it all, low white, red and Platletes. 

I had Neupogen for the white, a blood transfusion for the red and luck for the platelets. 

I hope your numbers are up for next week, becasue like you said, missing a week just puts the finish line back. 

Tru

mamabea
Posts: 1
Joined: Nov 2019

I just ead thru the comments for chemo and found them most helpful.  It's very important that we all support each other.  Thank you again. 

Annabelle41415's picture
Annabelle41415
Posts: 6212
Joined: Feb 2009

It is so common to have this happen, and like Tru said, some of us end up having to take shots (or boosters) to help those counts go up so that you can take treatment.  You don't want your counts too low as if you get a bad cut, you could bleed out.  It's best to get those counts taken before treatments just to make sure that you are where you need to be.  Don't worry about the extra week, sometimes it happens several treatments in a row.  Wishing you well going forward.

Kim

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