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SIde Effects of Folfox

Kelly41
Posts: 15
Joined: Dec 2009

Hello,I am new here and am posting a question for my mom. I read your posts everyday and think you all are a wonder bunch of people and I pray for all of you to get better. My mom was just diagnosed with a GI cancer (not sure of origin). We are visitng Mayo Clinic and they want to start her on Folfox. Have any of you tried this and if so what were the side effects? How much hairloss? Nausea? numb fingers? She is stage 4 so not alot of options for her since surgery is not an option.

Also, has anybody heard of a drug combiniation of Lovastatin and Interferon? I found this on the web that may be an option for colon cancer.

Thank you all for your helpful advice! By the way I am in the health insurance business so if anybody needs advise about insurance coverage I might have the answer :)

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

HI Kelly, I'd venture to say almost all of us have had FOLFOX. I'm 59 and did 12 tx's with FOLFOX at age 58.

My hair thinned but it began growing back in while still on chemo. I never looked like my hair was thin.

I felt queasy 3 times but never threw up. Fatigue after disconnect from the 46 hour pump was severe but lasted only 3 days for me, at the most.

Cold bothered my throat and fingers but would pass within days.

I completed chemo mid August. My fingertips still feel like pins and needles but my feet feel like there is wet sand in my shoes and my skin on my legs is numb to my knees. I can deal with this! No big deal to me.

Check out Lisa42's post on Dr. Cantrell. VERY interesting and it might jusr help your mom.

God Bless,
Diane

Kelly41
Posts: 15
Joined: Dec 2009

Hello Diane, Thank you for your quick reply. I am looking for Lisa's post right now. At this point we are willing to try anything.

I am glad to hear that Folfox does not have any horrible side effects. You said that you stopped after 12 treatments. Does that mean that you are no longer on chemo, or did you have to try something else.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Kelly

Folfox and Folfiri are our cocktails of choice here in Semi;Colon land :)

Way too many of us have done both, but since you asked specifically about Folfox...

It will knock the you know what out of cancer cells - but along the way it knocks us around pretty good too! It's very strong and very toxic. Hair loss is not so much, but depends on the individual. Nausea runs rampant with this drug and can be controlled by a variety of nausea meds: Kytril, Phenegran, Emend etc.etc.

Folfox, the big chemo drug inside is called Elotaxin, which fondly goes by Oxaliplatin. You'll see us call it Oxy or Oxal. Extreme cold sensations and neuropathy are the big culprits here. You will be unable to drink cold liquids for 5-7 days after taking the infusion. You won't be able to run your hands under cold or even cool water. You'll need gloves to get stuff out of the fridge - especially the freezer. If you grab without gloves, it's an electric shock feeling you won't ever forget.

You can get clumsy and drop stuff because you can't feel as good as you used to. A couple of days after infusion, you will be so sick and tired, you will just want her to sleep and sleep - and that's good medicine until that storm passes for that infusion cycle.

Prescribed treatment is 12 rounds over 6-months every 2 weeks. White blood counts and Blood Platelet counts will be monitored heavily. Blood platelets are critical for infusion to even take place - if the level falls below 100,000 then the onc should suspend chemo until the levels rise. Typical range for a normal person is 150,000-450,000. Blood platelets are what clots your blood when you are cut, so this level is important to keep an eye on.

Some of us make it to the full 12x treatments, but if you do, there will be a price to pay for it? Neuropathy varies among our members, but going the full route will leave you with some side effects.

Alot of make it between 8-10 treatments and then we are OUT OF THERE! The body just cannot take it anymore, again due to the extreme toxicity. The biggest thing I can advise is to keep reporting how your hands and feet are doing with numbness after each cycle.

I liken Oxy to playing Russian Roulette, you never know which round the bullet will go off, leaving you with permanent neuropathy. The more cycles you do, the more you increase the chance of things becoming permanent.

If Oxy is stopped, Avastin can be introduced, which cuts off blood supply to the tumors. And Xeloda can be introduced, which is 5-fu in a pill. 5-fu in IV is part of the Folfox infusion cocktail.

If you're still with me, THANKS :)

I hope this is not too much overload - we wish you all the best - stay with us - ask anything that you need to know - welcome to the Board - and BTW, nice to meet you, Kelly...tell Mama hello from us here in Semi;Colon land.

-Craig

Kelly41
Posts: 15
Joined: Dec 2009

Crain, Thank you for your response. It is nice to hear from somebody that has actually been through this. I wish you the best and will probably have more questions once she starts the chemo.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I had 12 'mop up' treatments for Stage III colon cancer so I'm all done. :o)

Some people DO have more severe reactions to chemo. I had a splotchy rash during infusion that was controlled with more Benadryl and Ativan but no hives and no itching.

I had constipation so planned ahead and ate Raisin Bran the day before, day of and day after tx. Many or most have diarrhea. We're all different but I thought my age would be close to Moms and it would be good for her to know another older gal did just fine.

Diane

coloCan
Posts: 1956
Joined: Oct 2009

Also watch out for loss of appetite where you have no desire or taste for food. nutrition drinks can help here but always tell onc of onset of any side effect. we all react differently to chemo. Do not drink anything cold as you will feel as if your throat is closing up on you. When you start chewing food, you may feel strange sensation at ends of jaw I usually wait a second and then continue chewing.....Steve

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Tell your mom that my husband was able to complete all 12 treatments of Folfox and he is 60. The cold sensation and fatigue affected him the most. After several treatments he did have the neuropathy. Some of the problems were buttoning a dress shirt, holding on to things like a glass, he uses both hands when walking around with a glass. Sensivity to cold things (no reaching in the freezer for something). He did not experience the nausea many do and in fact, was able to continue working while getting treatment but for infusion days. It is tough, but doable. He has colon cancer as opposed to rectal cancer. Tina

PPrice
Posts: 7
Joined: Jan 2010

Hi Kelly,

I am a 43 year-old female and new to this forum :)
I started Folfox-Avastin in mid-November for stage 4 colorectal cancer (with metastasis to the liver), and just completed my 6th treatment today. Overall, I would say that my side effects haven't been bad compared to what others with different types of cancers and treatments have to deal with. The tiredness, stomach discomfort, etc. tend to go away for me after about 6-7 days. I feel pretty darn normal again after that.

Like Diane, I can tell my hair has thinned a bit, but it only seems that way to the touch. There is nothing noticeable to the eye. However, I do like not having to shave my legs as often :)

While Oxaliplatin has had the worst side effects for me, they haven't been too bad and they are manageable. The tingling in the fingers is pretty annoying, and even a bit painful if I hold onto something cold too long… and I only hold cold things with gloves on during this time. I already tend to be a cold weather wimp, and I get cold easily, so I experience this side effect when the temperature in my hands goes down even a little bit. A nice set of gloves is handy. The worst of the tingling clears up for me after about 8-10 days. No numbness/neuropathy yet, which I am grateful for :) Craig and Tina described other effects of this drug well too.

I tend to get tired after about day two or three post-chemo treatment and take 2-3 hour naps on those days. Otherwise, my energy level returns well after about 5-6 days. Please see my note on nutrition and exercise below.

Like Diane described, I also had an unpleasant bout with constipation. I would strongly recommend drinking a lot of water and eating fresh fruits and veggies every day. I was taking an iron supplement which made the occurrence of constipation more likely, but have since had good enough hemoglobin counts to stop that. My doc also recommended Colace (an OTC med) which helped me quite a bit. I will taper off that soon and see how it goes :)

Steve mentioned loss of appetite. I have had some nausea that was tolerable. I have yet to take a prescribed med for it. I have also had slight stomach upset, both of which make eating difficult at times. However, it is important to get those healthy calories as weight loss may occur, and we need nourish our bodies as much as possible with good foods. There are probably some good books at your local library about how to eat while on chemo. There are recipes for those who have some loss of appetite, nausea, or aversions to certain smells/foods.

For me, eating very healthy and exercising daily has helped me manage side effects and feel better faster. I don't know if excessive exercise is good for everyone (check with your doc first), but research has shown exercise in general to be good for preventing occurrence/recurrence of colon cancer. My husband and I have been very strict about a healthy diet (such as the book, "Anticancer: A New Way of Life"… has anyone else seen this book? What do you think?). Just last week I had my first CT to look at progress. I was thrilled to have a 60% reduction in my primary tumor, and 30% reduction in the liver lesion. I do feel like diet and exercise are really important during treatment! Anything we can do, we should do :)

Sorry for the novel here… I hope some of it is useful.
Kelly, I wish your mom well in her treatment!
Prentiss :)

ann2008's picture
ann2008
Posts: 119
Joined: Nov 2009

I had folfox for stage III colon cancer. I had 10" of sigmoid bowel removed. Craig touched on every symptom of Oxy that everyone usually has, just to different degrees.
I had nausea sometimes day #1 but mostly day #3 as I was unhooking my pump. Then off to bed for 3-4 days with the feeling of having the flu without the temp. I would gradually feel better and would have the cold "elecrical shocks" and unable to drink anything even cool until about day 8-10.
THEN I felt great and could eat or drink anything I wanted, had energy and dreaded the next round. This was my routine after each Rx. I noticed before #7 that the intolerance to cold lasted to day 12. Then during #7 I had a reaction. Onc then stopped the Oxy but continued with the 5FU and Leukovorin through all 12 Rx's.
I have neuropathy also. Fingertips tingle all the time and feet tingle and feel numb on bottoms. It is something I can live with but wish I didn't have to.
Just remember everyone reacts different and to different degrees. Keep in touch. Ann

victory10's picture
victory10
Posts: 75
Joined: Dec 2009

Craig touched on things that even helped me prepare for my 4th round. I am an exeption because I take each treatment as "the first' one. I try to forget the previous rounds and on focus on that one and so each one has been different. I am also trying to learn something during each treatment that i didn't know before about myself and life...it's making this a journey of self evaluation and actualization instead of focusing on the actually symptoms. To keep from all the heavy neuropothy I find that during my treatments I won't even touch the refriderator freezer door. I wait for my hubby to get it for me to warm in the microwave or I will wait until he comes home from work. I eat a very stringent menu on the days that I am on the pump (Monday to Wednesday morning) It consists of peanut butter and jelly sandwiches, vegetable soup, oatmeal,cheese and saltine crackers. Even when I eat my Activia I let it sit on the counter until I think its room temperature. I got my Healthmaster last week so tommorow I will try to make the health drinks to see if it taste good at room temp. that way I will get some spinich and fruits in on my treatment days. Hope this helps...I still have 9 innings to go and after that its life to the fullest...

Kelly41
Posts: 15
Joined: Dec 2009

Thank you all for your suggestions. My mom starts on Tuesday and we are both nervous about the unknown but it helps to hear from people that are going through the same thing. I am going to suggest drinking water and she already drinks Boost so hopefully that will help keep her weight up since she is losing so much so fast.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

I got to the point where even room temp was too cold, so then everything got miked. Chocolate Ensure in a coffee mug, with a bit of cinnamon on the top, then in the mic until it was nice and warm- was wonderful and many days that was the only nutrition I got!

westiefriend
Posts: 5
Joined: Jul 2012

Independent cuss that I am, I used gloves to handle cold/frozen items.
But finally I had to call my hubby...ever try to crack an egg with gloves on?? :)
SAR

westiefriend
Posts: 5
Joined: Jul 2012

After twelve treatments upon first recurrence of pancreatic cancer and now having completed three treatments on the second recurrence, my experience and advice is: no two chemo effects are the same - even for the same person! The chemo has cumulative effects and can't be predicted.

First had extreme cold sensitivity, now I have barely none. Previously I had good digestion; now I have intestinal issues. Mouth sores have been present in both but have dealt with better using a prescription, Magic Mouthwash, regularly, to the max, four times per day.

Best wishes,
SAR

Tutu1234-
Posts: 1
Joined: Feb 2017

What is the best regimen to relieve the comstpation w Folfox?

mozart13
Posts: 118
Joined: Nov 2016

This is old tread, but back to constipation.

In general the best way is to drink a lots of water, eat food high in fiber, walk, avoid sugar.

Good luck!

IcyMoonstone
Posts: 41
Joined: Feb 2017

I had to take stool softeners because it was that bad for three day.  But I had to watch and not go too long because I would swing the other way.  But it did help for 2-3 days to take them.  That was one of my biggest problems with FOLFOX.  But it was manageable. 

impactzone's picture
impactzone
Posts: 531
Joined: Aug 2006

Stage 4 guy here who had folfox 10 years ago: couldn't eat cold stuff, eventual neuropathy on feet, tired... 10 months of it but it did work. I was able to work during the time with some days off as a teacher. We found for me that the slower the infusion, the better. I did have a converstaion about supplemental vitamins and teas during infusions and there was not research about many of them. The oncologist ( at Stanford) said they may make you feel better because they are slowing or interferring with the effectiveness of chemo cocktail. So I was pretty careful about doing other stuff during chemo... But that was me and I think belief matters so if some took mega doses and it helped, more power to them as they know their bodies. The randomness of cancer makes it more difficult.

Good luck and all my best.

Chip

Joan M's picture
Joan M
Posts: 380
Joined: Oct 2016

I was wondering which doctor  your mother saw at Mayo?   Last year I was referred to Dr. Axel Grothey at the Mayo Clinic in Rochester.  I was diagnosed at Stage 4 in  March of 2016.  He prescribed only 8 rounds of Folfox because the neuropathy from the Oxaliplatin can become permanent when you have 10 or 12 treatments.  He said I would then take Xeloda and Avastin infusions as "maintainence chemo" for the rest of my life.  I asked him how long I could survive with this condition, and Dr.Grothey said I would probably live for "many more years".   

I was able to get the chemo at my local clinic so I didn't have to travel to Mayo.  I did pretty well on the chemo, pretty much had the symptoms mentioned by everyone elso on here, but not as bad as most describe.  I had mouth sores a couple of times and got the "Magic Mouthwash" which helped.  My hair got really thin over the course of 4 months from the folfox and started growing back in after I went on  maintainence chemo.      

I was told I was not eligible for surgery due to the number and location of the tumors.  The only treatment offered to me was chemo and I thought that meant there was no hope for me.  However, the chemo worked really well on me.  The tumors shrunk and some even disappeared from the chemo alone - there is no visible evidence of the primary tumor in my colon!

I was referred to an Interventional Oncologist in January 2017 and had a microwave ablation for a 3.2cm tumor in the left lobe of my liver, and next month I will get Theraspheres [radio active beads] to kill off the tumors in the right lobe of my liver.  After that  he is considering an ablation in a tumor in my left lung.  That would mean that all the tumors in my body would be gone - without having surgery! 

I so amazed at the knowledge and advancements in the medical field and especially in cancer treatments. The improvement in my health over the last year is truly a miracle!

Praying your mother has good results too! 

Joan

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