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Trying to be realistic - FOLFOX

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

In the medical community everyone wants to keep your spirits up and hopes up. I don't feel they always tell you what you will probably go through.

I know everyone reacts differently to treatment. I'd love to hear from those that have been on FOLFOX or are on it now, about your side effects, and how severe or not severe they are.

I run my own business, and my daughter just informed me that this semester she is overloaded and won't be able to work for me as planned. My other daughter is moving to Australia for a year in a few weeks (been planned for many months). They are the only two that have ever worked for me. My boys are too young to work for me. Right now I'm not organized enough, nor do I have enought time to train anyone else to do what they did for me. (While I didn't have emergency surgery, it was basically - I found out Monday night that I needed it ASAP, and was scheduled for Wednesday AM.) And I don't want some stranger coming into my home (home office) while I'm going through this, and don't know how I'll react. So I am hoping to make it through the next 6 months working full-time+. I am able to be flexible with my hours, and realize that I cannot realistically work my usual 60+ hour weeks, but I need to be able to work as much as possible.

For those of you with FOLFOX experience, please answer the following questions if you don't mind sharing:

What part of the cycle was the worst? The days hooked up, or later?
How bad was/is your fatigue? Do you function well enough to work as you always have, or have you had to make major changes?

And the other piece here too - nueropathy. Did you have trouble from the Oxaliplatin? How severe? For someone that needs to type a lot, is it an issue?

Anything else you want to share that you think would be helpful as far as my expectations for side-effects. I hope for the best, but due to my situation, I need to also plan for the worst. That is hard to do if everything has been sugar-coated.

I know I've asked a lot. It would be helpful to hear from real people about their experiences, rather than just read a list of what side-effects I might get, and listen to reassurances that they'll do everything they can to minimize my discomforts.

Thanks

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Hi Kathryn

You're a pretty tough cookie and your experience may be different, but I will share with you my experience with FolFox.

I only was able to complete 8 of 12 rounds. It knocked the blank out of my immune system and compromised my body's ability to produce blood platelets at an acceptable level to receive chemo...minimum is 100,000 to do chemo. Normal range of a person is 140-450,000.

I started out every 2 weeks as prescribed but by treatment #4, I began slipping back and treatments become once a month and so on...at the end I waited almost 2 months to be able to do treatment...we weighed the toxicity against the effects and my body's inability to take it on schedule and we called it a day there...I finished up on Xeloda and Avastin.

Now, neuropathy is a big issue for some...extreme sensitiviy to cold...you need gloves to be able to get anything out of the freezer...touching anything cold is like little electric shocks. The big thing about Oxy is the further out you go, meaning the more treatments that you do, you begin to risk "PERMANENT" neuropathy...doctors cannot tell you which dose that would be. But anything after 8 could be permanent. I type alot too, it was an issue early on but the side effects went away and I'm ok there now. I still get tingling in my feet sometimes, but it is not major.

Cold sensations in the throat are the other big issue - you have to drink liquids at room temperature for 5-7 days after each infusion. Cold drinks with or without ice will hurt and you will feel like your throat is closing or something like that. What helped me during the treatment is an IV drug called MAGNESIUM SULFATE - this lessened my neuropathy in the middle of the treatments and I was able to drink cold liquids the very day of treatments after they started giving me that - it was a real blessing...does not work for some people but ask your onc about it - will improve your quality of life during treatment if it works for you...worth a try.

Lastly, FATIGUE is a real whip. Usually for 3-4 days after infusion, I slept a good deal for most of the time. I did them on Fridays, so I had Saturday and Sunday to take the brunt of that...I would then have to miss work on Mondays and Tuesdays and return Wednesday, but still felt really, really bad.

It's going to very hard to work like you are planning to do - as I said you are tough, but 60 hours weeks, only you can tell me that. I think it will be rough and you have to let the body rest when it calls for it.

If you have to Avastin and Xeloda, I can give you what to expect there as well, just let me know.

I've read your posts, Kathryn...and I wish you the very best of luck...I'm over here in the corner if you need to talk to me.

Blessings to you
-Craig

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Kathryn,
I just started on FOLFOX and this coming Friday will be treatment #2 for me. I have experienced no neuropathy yet and no issues with cold either. Last Thursday I had to leave work a few hours early due to extreme gastrointestinal pain. I made it 6 days before having a minor problem. I work a 9 hour day with 30 minutes for lunch and an hour and 15 minute commute each way. So my average day is about 12 hours. The key is to pace yourself. As Sundanceh said get rest when you can, this is extremely important. You need to realise that most things in life will wait, that goes for customers too. If you let them know you may have limitations for the time you are doing Chemo, you will find most people to be fairly understanding. Of course as you stated everybody is differnt. Best of luck to you.

Don

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

When first diagnosed (Aug'04)I had 6 rounds each of FOLFOX and FOLFIR. My worst days were the 2 days of the active infusion. I basically laid around for those days. I started picking up after the pump was removed.

My white blood cell and platlet counts dropped but otherwise I was feeling OK. I opted not to work and went on LTD primarily to conserve energy, focus on healing/recovery, and avoid infection. Many people do work through this with various adjustments.

I may have been one of the lucky ones but the Chemo experience was not as bad as I had dreaded.

I hope it works out for you.

Rob; in Vancouver

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

My Folfox was 6 months, 12 treatments, every other week.I too had the Mag Sulphate but it didn't help me or maybe it did but the effects were still hard on me. I took off infusion week and worked the second week (felt lots better after the 5th day) The cold drink was completely stopped after the first 2 treatments until 3 weeks after the last one and then I was OK to do cold drinks. Neuropathy was rough in the feet, still is and fingertips are still tingly but typing would never have been a problem. Isn't typing more an unconscious dexterity thing than a feel/touch/memory thing. In my opinion I wouldn't think that typing would be affected by it. My fingers tingle they aren't stiff, so I think typing may be OK (only my opinion though)
I did a lot of laying around on the first 4 days of infusion. I had a lot of nausea problems and I did stop the Oxal after 10 treatments because of fear of permanent neuropathy. (BTW, the tingling sensation has to be informed to the Dr by you as it gets worse. He can't detect that them self, you are the one that dictates how much is enough for you. Keep your Oncologists very informed of how you feel at all times. It is very important in how your 6 months will be.If you have pain he has medicine for it, simple as that. Do not be miserable through treatment, learn as much as possible and try to head it off before it happens......Some have constipation problems the first 4-5 days during infusion the start diarrhea after that. Be ready to combat it all and stay ahead of the game. You will suffer a lot less that way. Most of all when you need to rest, rest. If you have a good friend that volunteers to help you during this period, by all means let them help. That is their way of showing they care and we all need help when this happens. Take the help generously, and be kind to your body, give it what it needs to recoup. and as Craig said, I'll be over in the corner if ya need me also.

Lots of love and well wishes heading your way............Clift

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Hey Kathryn, I am on Folfox plus avastan my side effects have been neuropothy, metal taste in my mouth and CONSTIPATION!! that is the worst for meI am constipated the very next day and it takes me a few days to get right. Now I have hemmoroids that are painful. I do not work but, I do plenty around my house. I go to all practices except when I am on the bag. I go to football and cheer games all weekend.I have fatique but never take naps. I do need to take an ambien to sleep at night as the chemo will keep you up.( at least it does nfor me) Not sure if you could do 60 hrs. a week but I think you could still work. Patti

taraHK
Posts: 1961
Joined: Aug 2003

When I was doing FOLFOX, my infusion was Thurs am-till Sat around noon (48 hrs+). I was hospitalized for the infusion (peculiarities of the system where I live). Thurs I felt pretty good -- would do some work. Friday and Saturday I was pretty sleepy. Came home Saturday. Slept. By Sunday I was feeling better -- tried to get outside with family. Monday back to work. So I then had 10 days of feeling "pretty good". My job has quite a lot of flexibility. I took a nap most days. But then I could work some in the evenings, etc. I had neuropathy in my fingers and toes but never interfered with work (I could type at computer and write...). Everyone reacts differently. If you have some flexibility in your hours, and if you are prepared to NOT be as 100% effective as you have been, you shd be fine for continuing to work. But, do respect your body and what it is telling you! Good luck to you.
Tara

Annabelle41415's picture
Annabelle41415
Posts: 4188
Joined: Feb 2009

At first I had no problems with treatments except for the cold sensitivity. On the first treatment it only lasted a day, but second treatment lasted 5 days. Got better after I started taking vitamin B6 every day. As more treatments accumulated, the neuropathy and cold sensitivity and fatigue would last longer and longer. Oxy was the hardest for me. Just knocked me for a loop. I am going three weeks between treatments now (instead of two) because my white counts and platelets are so low. For the last three rounds I have been taking 5 neuopgen shots to boost my white/neutrophil levels. If you have to take the shots, be forewarned that they make every bone in your body hurt big time. I wasn't told this and it scared me big time. Even washing my hair hurt. I know Craig was on neulsta (I think) and that is a one time shot a month, mine are daily, but basically they do the same thing.

Keep you head high - you will get through this. You have a great new family here to help you get through it and to support you through your treatments and emotions.

I didn't work so I'm not sure about that, but I do know that my fatigue was so bad some days it was hard to just do the simple things at home without being totally whipped. You can try and push yourself, but that is not good for you either. Listen to your body - it's the best thing. Good luck and let us know how you are doing.

Kim

Mchapp's picture
Mchapp
Posts: 96
Joined: Jul 2009

This is given on the following schedule:
FOLFOX4
Adjuvant treatment in patients with colon cancer is recommended for 12 cycles, every 2 weeks. The recommended dose schedule given every two weeks is as follows:
Day 1: Oxaliplatin 85 mg/m² IV infusion in 250-500 mL D5W and leucovorin 200 mg/m² IV infusion in D5W both given over 120 minutes at the same time in separate bags using a Y-line, followed by 5-FU 400 mg/m² IV bolus given over 2-4 minutes, followed by 5-FU 600 mg/m² IV infusion in 500 mL D5W (recommended) as a 22-hour continuous infusion.
Day 2: Leucovorin 200 mg/m² IV infusion over 120 minutes, followed by 5-FU 400 mg/m² IV bolus given over 2-4 minutes, followed by 5-FU 600 mg/m² IV infusion in 500 mL D5W (recommended) as a 22-hour continuous infusion.
Day 3: unhook iv infusion pump at office or at home (home health RN)
Day 4: may need an injection of Neulasta to rebuild white blood cells.

Keep in mind chemotherapy will cause fatigue and travel will be a big deal for you. Besides the chemo/radiation treatments themselves, you will need lab and radiologic follow up frequently to identify disease response to the treatments. I would ask questions directly related to the medications and how they will be given, side effects etc. You may also research your insurance coverage (these medications and support medications run in the thousands of dollars) to be prepared to any copayments and to find assistance programs if needed. You could ask about statical survivial rates, the Colaris genetic test if not already offered, and home health nursing to reduce travel.

Your treatment will most likely continue for a 6-7 month period and soon you will become the expert.

Just remember, you will have some tough days and it will be ok to share your feelings with family and friends. Not everyone knows how to help and some will overprotect but, you are loved by many, let them help and take time for yourself when you need to.

My fatigue begins on day 3 thru 5....same with the hand neuropathy...I work from home as well, and just work when I feel up to it...the week off I really fell normal and plan to work more on the week off than the week of treatment...I have completed 4 treatments to date...they did decrease the oxi by 20% because the neuropathy was lasting the full 2 weeks after treament # 3...I also journal my symptoms everyday, so my oncologist and staff know how to adjust my dosages.

I hydrate with lots of water on my week off as well as the day of treatment - so no nausa or nausa meds....I also eat small meals all day long - so no consitpation. Also take b-12 and b-6 on the off week. My oncologist does not want to use mag sulfate, her thought is it will reduce the theraputic levels of the chemo...I want as many as those microscopic cancer cells to die....

Website for drug information:

http://www.chemocare.com/ this link will explain the chemotherapy medications/side effects/self care tips.

Fight Like a GIRL!

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

Sorry to hear you have to go through this. As you already know it is hard for you Onc to tell you how you will react to treatment, you are unique just like everyone else ;-)
(everyone is probably sick of that line but I like it still)
I will say that so much of this is your attitude. I did FOLFOX with Avastin 5 1/2 years ago for 6 months. For the final 3 months of it I started to kayak everyday. I wound up going 81 consecutive days. That included days I'd go for chemo and get hooked up to the pump and all. I would be there for a few hours (maybe 4? can't really recall anymore) but I only had to go there once to get things going, a nurse would come to my house to disconnect me (when she wasn't busy torturing people...she was the WORST nurse I ever had). So fatigue, while I certainly had it, did not stop me from doing something once I had my mind set on it. I also had the usual side effects like the sensitivity to cold which I still have slight neuropathy from but it's mild. I did go every other week for treatments and sometimes I'd be more nauseous than others. I did work while I was going through this but I would take the chemo day off which was Friday for me, then I'd be hooked up to the pump until Sunday so it didn't interfere with work much. Some weeks were worse than others and I would take maybe 2 days off, it really depended on how I felt. I was fortunate to have that flexibility.

Be realistic Kathryn, don't think you're a goner and don't think everything is just peachy. It's a roller coaster ride for sure so be ready for the ups and downs. I did find that after a few months I needed to get into some therapy to deal with all of the emotional stuff that can sometimes come along with this. I also benefited from some medication to take the edge off of things, you need to do what you need to do is how I approached it.
Remember, just because I had these side effects or someone else had different ones, you won't know until you get into it how you will react.

Attitude is everything
Be well
-phil

Nana b's picture
Nana b
Posts: 2707
Joined: May 2009

I worked full time and had a 2 hour commute each day, made up my chemo time, so had some 10 hours days/weeks and drove myself to chemo. Got tired now and then but rested at needed when I got home. Changed my diet to more of fruits and vegatabels, lots of water, low suger.

Keep in mind that we are all different and get diferent side effects, but I had most of the side effects, neropathy, purple hands, loss of hair, plugged up sinus, sore head, cold sensitivity, restless leg syndrome, mouth sores.

I think keeping a postive attitude and getting up each morning and getting dressed helped me a lot.

Good Luck to you!

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Thank you so much everyone. This is exactly what I was looking for - the variety that can be expected. I need to find a way to prepare if I end up worst case, even though I think I'm going to do pretty well with all of this. Not much slows me down. But much better to be prepared and know most of the "what ifs" than to be blindsided later.

mk1117's picture
mk1117
Posts: 42
Joined: Jun 2006

Kathryn -

I just wanted to chime in with my chemo experience. I didn't work during my chemo, primarily because I was a teacher, and my ONC didn't want me around all those germs. I had 12 rounds of Folfox - every 2 weeks, with an infusion pump for 46 hours each time. My personal experience was that it got harder with each treatment, but it was worth it, because each time it put me closer to the end. Only my last treatment had to be delayed until my white blood cell count improved. I had no nausea, no vomiting. Days 2 -4 felt like I had the flu, and I just had to lay around. Neuropathy worsened. I wore gloves to the grocery store, or had my kids handle the frozen items. I kept Propel fruit flavored water at room temperature to drink. Even though I wasn't working at my job, I continued to work on completing my master's degree. I went to graduation one week and received my masters, and the following week completed my chemo. I'm not sure which certificate means the most!

Also, neuropathy lessened with time in my situation. It has been 4 1/2 years since I started treatments, and most of my neuropathy has ceased.

I did lose my hair, even though there was only a 20% chance that I would. It was the most emotional part of the treatment program, because I felt like I went out in public there was a big "C" floating over my head that people would point at and say "Look she's got cancer." But I survived it and my hair grew back, and I'm darn happy to be here.

Take care!

Kathy

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

Hi Kathryn

I'm in MN also - finished FOLFOX about 4 months ago. Am about to be off to work at the moment but wanted to chime in quick and say If you are anywhere near me (St. Paul area) I'd be willing to help you if I could.

You shouldn't have much trouble with typing, I do it all day. Continued working through chemo, although did half days. If I worked at home, think it would have been much easier! The worst days for me was the day I got unhooked from the pump and a day or so after. I would suggest investing in post it noted however, head tends to get a bit fuzzy sometimes, but not so bad either.

Sherrie

tiny one
Posts: 467
Joined: Jan 2009

I received continuous chemo for 5 1/2 weeks along with radiation. I started treatment about 1 month after my resection. I was still recoperating from that and dealing with an ostomy. Then 6 months of oxiplatin, that was twice a month. I had fatique after treatment but it was mild enough that I was able to be active. I did not work during treatment. Nausea was pretty mild. The sensitivity was hard to get used to. I completed all of the treatment and did not have any major problems from the oxi. I was able to clean house everyday, just did things alot slower than I normally did. I push mowed my yard and gardened the whole time during treatment. Took a couple of trips, also. Usually I would do a little something, rest a little, do a little more and so on. Chemo brain I had to deal with. I would go to do something and felt like I was in a fog.Some days I needed more rest than others. I didn't lose my hair, it just thinned. I do have side effects from the radiation, rectal narrowing and vaginal shortening. I was able to have my reversal, that was harder than my treatments ever were. Hopefully you will go thru this as easy as I did.

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