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Advice re: Folfox

catherine58's picture
catherine58
Posts: 92
Joined: Feb 2007

I am starting on a 6 month course of Folfox after Easter. The oncologist told me that my chances would be improved by 10% if I had just 5-FU/Leucovorin and by 15% if Oxaliplatin was included, so somewhat reluctantly I have agreed to the more toxic package. The Oxaliplatin and Leucovorin will be administered over two hours (via a Hickman line) and I will then have the 5FU via a pump for the next 48 hours. This will be repeated every two weeks.

I am much more apprehensive about chemotherapy than I was about the surgery (from which I have bounced back). Although I have stopped work until the treatment is over, I am a single mother and would be very grateful for any tips as to how to organise things before the treatment starts. For example, I normally get up at 6.30am and walk my daughter to school (one mile each way) and then back again in the later afternoon (i.e. four miles a day). Will I still be able to do this or should I start looking for some help? What about driving the children around to sports etc? Shopping and cooking? Gardening? I am lucky enough to have some help with the cleaning and ironing, thank goodness.

I have read some awful things about the side effects, and wonder if most people suffer from nausea/diarrhoea/fatigue/hair thinning/mouth sores/sensitivity to cold/numbness and tingling of hands and feet/dry eyes and skin/hand and foot syndrome?

At what point in the cycle does one tend to feel worst? I gather it is not always during treatment, nor even the first couple of days afterwards.

Also, the oncologist strongly recommended taking steroids, to cope with the nausea (he said the alternatives weren’t nearly so good). I know it’s vanity, but I hate the idea of getting fat (as well as bald!). Does anyone have any experience of this?

Thank you so much for your help.

Catherine

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Catherine,

Congratulations on completing your surgery. Mine was on October 15, 2003 and I, too, recovered very quickly.

I took Folfox as well and was able to complete all 12 cycles, but I did have some delayed due to blood levels and blockage complications.

I drove myself to each treatment, did my shopping, and took care of my elderly mother who lives in my home. I did have outside help with her and with my cleaning and cooking.

I chose not to take the steroids, but I think that my nausea was greater because of that decision. Two days after the completion of each cycle were my most difficult days. I generally would sleep a lot and let my body recover. I did take 130 mg. of oxaliplatin and I understand that 85 mg. is the standard now, so the greater dosage may have contributed to my side effects more than the absence of the steriods.

Anyway, this summer I will be three years from completing this regiment and I'm doing great. You will as well. Keep us posted.

Hugs,

Kay

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Hi Catherine,

I Started Folfox treatment Nov 2004 and completed all 12 cycles without delay. My side effects were fairly minimal, but fatigue was by far the worst.

I did receive anti-nausea meds before each treatment and had very mild nausea with most of my treatments. My stomach didn't feel great, but I wasn't violently ill either. I did have 2 scripts for nausea "just in case" and had to use them a couple of times. I would definitely take the anti-nausea meds and just know that you will quickly drop any weight gained after treatments with diet and excercise. Also, keep on hand a stool softner and a diahrea med as I needed both usually within the same week and take them at the first sign (or eat natural foods to help with this process if you can get them down).

I had mild neuropathy. I had to drink room temperature drinks from day 1 of treatment and for maybe five days afterwards. Also had to be careful about grabbing stuff out of the fridge or freezer. Towards the end, I did have some tingling in the feet and still have very mild tingling in my toes. It never kept me from walking.

Mostly, I just slept and let my body recover. My treatment started Wed morning, Thurs morning, and I had a 48 hour pump that was disconnected Friday afternoon. I was usually fine on Wed, more tired thursday and would go home to bed and wouldn't get up until Saturday afternoon typically. Sunday was generally my "bounce back" day.

Walking and excercise along with drinking plenty of water and a good nutrition will help. Sometimes easier said than done, but if I have to do it all over again I would focus a lot more on nutrition no matter how bad I felt.

Beating Cancer with Nutrition by Dr. Patrick Quillin is an awesome book and gives some great ideas for stuff to help through chemo. I highly recommend picking up this book before you start treatments.

As for your typical responsibilities, I would say that you should have someone "on call" just in case. Four miles is quite a distance to walk when you feel bad. I was able to drive myself to all of my treatments and did help with grocery shopping. I also reserved those tasks for the days that I was feeling better. Those three or four days after treatment I was pretty much stuck in bed, though. All people are different.

You will start to see what your pattern will be and will be able to schedule accordingly.

I pray for easy treatments.

Tricia

PS Sorry for the long novel, but I wanted to give you as much information as possible.

impactzone's picture
impactzone
Posts: 529
Joined: Aug 2006

I just completed 5 months of xeloda, oxaliplatin and erbitux before I had successful liver surgery. My experience was that I took the steroids and they helped so I did not have nausea. i made sure I had antinausea medication, stool softeners and diarria medecine at home. I was able after the first cycle to keep working but as the cycles kept going I got weaker. I did have neuropathy because of the oxaliplatin and developed some bad heel cracks. I did not loose any hair. I realize its so hard (I am stage 4) but anything you can do to help with the chances seems to be a good thing. I have a 10 and 12 year old myself and I just try to stay alive for them. I did brush regularily and use biotene mouthwash as well as rinsing with a mix of baking soda, warm water and salt 3 times a day and I never got mouth sores.
All my best
impactzone

moniquebar
Posts: 57
Joined: Jun 2006

HI Catherine,

I too was extremely apprehensive about the chemo. However, while my chemo experience hardly resembled a merry walk in the park, it was not nearly as awful as I had expected it to be. In fact, some people on Folfox experience little side effects and continue to work and lead productive lives (although I was not one of them).

I found my treatments to be cumulative, meaning that as time went on the symptoms increased. Although everyone is different I found the first two days following the infusion okay (mostly because I was jacked up on steroids) and the next three days I was often flat on my *** feeling nauseous, exhausted, weepy and depressed. Not a lot of fun. However, following those three days, things improved slowly both physically and mentally. In fact, by the end of the second week I was feeling pretty normal.

One thing you might want to plan for is crazy bowels: constipation (due to the Oxaliplatin) followed by intense diarrhea (due to the 5 FU). You might want to invest in a stool softener (or some prunes, they did the trick for me) as well as some Immodium. Also, STAY HYDRATED, as this will help considerably. Oh yes, and wash your hands all of the time to prevent catching colds etc. Perhaps a good way to prepare for the effects of chemotherapy would be to premake some food. For instance, make a big batch of healthy stew and then freeze it in small containers so that you can access it quickly. As far as walking goes, by the third month of my treatment I could barely make it to the vegetable garden and back. Gardening I could do, but slowly and methodically. However, my blood counts were really, really low and an older woman at the cancer clinic, who was having the exact same treatment as I, was running marathons. So there you go, it depends on the individual.

Side effects:

Nausea: yes, I experienced some nausea, but the anti-nausea pills took care of it. However, I would suggest not eating your favourite food following an infusion as you may develop associative nausea. I, for one, have never been able to look an enchilada in the eye again. In fact, after awhile I purposely ate boring food.

Diarrhea: O boy, did I ever. Luckily a dose or two of Imodium seemed to do the trick. Try and catch your diarrhea quickly, lest you develop anal fissures. OUCH OUCH OUCH.

Fatigue: As my blood counts were low, I was quite fatigued. However, about half way through my treatments my oncologist lowered my dose (twice) and my fatigue lessoned considerably.

Hair Thinning: About three months in I lost about half of my hair, which I found very upsetting. For some reason I waited a while before cutting my hair short. Why? I have not the foggiest, as the short hair looked a hundred times better than the lank, sparse baby bird hair. That said, I have always had fine hair and sometimes, on those with thick hair, the hair loss is barely noticeable. Some people buy a wig, but I mostly wore baseball caps.

Mouth Sores: Nary a one.

Sensitivity to Cold: Yes, but I got used to it by basically avoiding touching or eating anything cold for the first week following an infusion. By the second week I was consuming ice cream by the barrel (not recommended).

Numbness and tingling: Yes, on both hands and feet. Oddly, I found that the peripheral neuropathy was at its worse after I had concluded chemo. However, I am happy to report, that, four months later, I barely feel it these days, which is great as it was driving me bonkers.

Dry Eyes and Skin: Yes, but skin cream helped (on skin, not eyes). One odd side effect was that every time I cried my eyes would sting like crazy.

Steroids: I found, over time, that I was able to reduce my steroids as they made me a wee bit psychotic. That said, If I were you, I would try and start with the full dose and then, under doctors orders, slowly reduce your steroid dose if they are having a negative effect. The bad news is that evidently weight gain is quite common for many people on Folfox. For example, I gained thirty pounds (however, I am quite tall). Better fat then dead I say. And anyway, I am happy to report that the weight has been slowly, oh-so-slowly, falling off. Only twenty pounds to go until I am back to normal! Still, I understand why this is a concern for you as it was for me.

I hope I have been of some help. Please post again if you have any other questions.

Best,
Monique

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Catherine -

I am not a fan of statistics, but if you think about it, a 15% improvement is FIFTY % better than a 10% improvement. So, it sounds a bit more worth it, right?

Everyone is different, but I'm happy to describe my side effects - from Xeloda (oral 5FU), oxaliplatin and Avastin (protocol known as XELOX plus Avastin):

Diarrhea - this is mostly due to the 5FU (in my case Xeloda) rather than the oxaliplatin. Immodium helps hugely. It shouldn't be too bad, but if it does get bad you should contact your oncologist right away.

Mouth sores - never had one

Hair loss - I had 6 cycles over about 5 months (Xelox is given nominally on a 3-week cycle rather than the 2 week FOLFOX cycle - I waited 4 weeks and then 5 weeks between 2 of my cycles.) Starting with my 4th cycle I had some tiny hair loss, noticeably only by me who had hair tangled around my fingers when I washed my hair. But no one else, including my hairdresser of 18 years, noticed.

Nausea - very low level. I was given a steroid with my infusion (dexamethasone - aka Decadron) as well as the antinausea drug Kytril. No steroids to take home, however. I did not gain weight during chemo. I had Compazine tablets to use at home - often felt some very low level nausea the first week after treatment, but eventually found that proactively taking the Compazine really helped with that - staying ahead of it worked much better than treating it once it was taking place. After the first week I was mostly ok in the nausea department. I never had to take any of the fancy, expensive anti-nausea tablets. In 6 cycles I only vomited one - that was 4 days after my first treatment and it was almost like being pregnant - came on all of a sudden and 10 minutes later I felt ok.

Cold sensitivity - the oxaliplatin will do this to you, but it is more annoying than anything else. You quickly learn not to stick your hand in the freezer, not to drink ice water etc. In my case at least, these symptoms were only significant the first 4-5 days. You also get what we call "first bite syndrome" - where the first bite of food may make your jaw sort of hurt. And as someone else mentioned, tears are painful. But, these are short lived symptoms and more annoying than really problematic.

Peripheral neuropathy - my situation was a bit different from most people's. I did not have a port. Starting with treatment 2 the arm in which I received the oxaliplatin infusion would stiffen, be painful to touch and very tingly. This would be bad for a couple of days and then diminish over the next 10 days. Once I had neuropathy in my feet - but it only lasted 2 days, went away (thank God) and never came back. I had no lasting neuropathy and while what I had was acute, it was gone by the time of my next treatment.

Fatigue - chemo does cause fatigue - think that's the case without the oxaliplatin, by the way. I'm not an expert, but reading things on this board, it sounds like 5FU infusion folks have perhaps more intense fatigue after being unhooked from the pump than do Xeloda patients who take a steady dose for 2 weeks. I'm sure you will hear from FOLFOX people about that.

When I underwent chemo I had just switched to working part time (3 days a week). I had generous sick leave benefits after 26 years - so I had my chemo infusions on Mondays and took the rest of the week off. I still read emails and kept up and if I had needed to push myself I could have gone back to work after 3 days. My husband was a help, but frankly, not that much of one! You can still manage a semblance of normal activities, but you might find that walking 4 miles a day is too tiring - would be good to have a backup plan in mind if possible.

So, I wish you the best. If your oncologist is just recommending steroids as part of your IV premeds, I wouldn't be afraid to do it. If he is recommending oral steroids post chemo to control nausea, you might ask about going with Compazine and seeing if that mostly works for you.

Betsy

hopefulone
Posts: 1048
Joined: Jan 2007

Hi . my husband just started chemo 2 weeks ago. He's on xeloda (pretty much same protocol as Betsy was, with avastin and oxal . From what I've read over time here, that everyone is different with the side effects, some have many, some none, some few, etc. His first treatment went well. The cold thing with the oxal was annoying for 4-5 days . He had no nausea after first treatment and was given steriods via iv , also compazine to take home, but did not use them . Did need the ammodium on the second day, but hasn't since . We are hoping that the rest of the treatments go as well as the first one did,but also know that things could change at any time. I suggest you have a backup plan for the kids just in case. I don't think anyone can tell you , including your onc, whether you will feel up to walking the distance on any given day. My husband feels good right now, but not back to work, because we simply don't know what the cumulative effects might be . I know how hard it is not knowing what you will and won't be able to do, so it's best to have a plan in place just in case. I hope your treatments go well with minimal side effects. God Bless.

Faith4Cure
Posts: 405
Joined: Mar 2007

Hi Catherine

My husband is doing the same Folfox treatment that your oncologist is recommending. He has 6 out of 8 cycles completed. He gets the treatment on Wednesday and takes the 5FU pump home for the next 46 hours. The treatments have gone pretty well. I would agree that the effects seem to be cumulative in that the fatigue and weakness seems to get a little worse each time. It is all not as bad as we expected. His worst days are Friday and Saturday (day 3 and 4) He has most of the symptoms as already mentioned to some degree, but does not have much nausea and does not take steroids. Except for Friday, Saturday, and Sunday,he is able to do his normal activities. He has continued to work. By Monday or Tuesday following the chemo he is almost back to being himself again. He has had some hair thinning, but not enough that most people would notice. As far as walking your daughter to school, I would have a person on call to do that, however, I think the exercise is a big help for your mood and energy levels. We have found that trying to keep our life as normal as possible (within reason) has helped keep the positive attitude.

My thought and prayers are with you.

Faith

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Catherine,

There's so much good advice here I really don't have much to add. Just a couple of points:

1. Walking your daughter to school will do you a world of good. Fresh air and mild exercise will feel great. Just make sure you bundle up, gloves, scarf as you will have sensitive finger tips and back of throat.

2. House work help - I think the day of oxaliplatin infusion, the two days that you're on the pump and two days after are the worst days. To have some help w/ housework and getting the children food will be very helpful. After that you can probably manage OK. You will see and gauge for yourself after your first couple of treatments.

3. Constipation - this was the biggie for me. Never had diarrhea, but terrible consitpation which eventually gave me hemorroids. Keep an eye on it if they give you kytril as a nausea drug.

3. Steroids - I hated it so I asked to be taken off after 2 rounds. Had no problme except more nausea and throwing up a couple of time after each treatment, which I considered fair trade.

4. Make sure you eat well, and eat enough. Patrick Quillin's book, as hard to read as it is, has it right on the value of nutrition during chemo.

5. Stay busy - I never stopped working because when I idle, my mind turns destructive. So I kept it busy with stuff. With 2 kids, you will probably never be bored. Keeping things normal and keeping a routine is a great way to control treatment anxiety.

Catherine, I think you'll do just great!

When do you start?

Cheers,
Ying

taraHK
Posts: 1961
Joined: Aug 2003

I did FOLFOX two years ago (completed 11/12) and am now on FOLFOX plus Avastin. I echo what many others have said. Wanted to highlight that I did not gain any weight although I had steroid coverage. Also I had hair thinning but didn't loose all my hair. I cut it short eventually.

I had nausea but generally didn't throw up. I had fatigue but kept working. I had sensitivity to touching and drinking cold which faded within a few days. I had pins and needles which eventually resolved. Overall, I found the symtoms very manageable and not too bad. I was able to maintain a social life, exercise, be fully involved with my kids.

But I don't think I could have walked 4 hrs a day -- at a minimum I think you might need a back-up plan. Some days you WILL be tired.

I had my chemo Thurs-Sat. Sunday I would lie low. Monday back to work. But my job is flexible.

Best wishes to you

catherine58's picture
catherine58
Posts: 92
Joined: Feb 2007

Thank you all SO much for this incredibly helpful information. It has really helped me plan my life for the next six months (I think I will start by trying to find a student who can do the walk to school four days a fortnight, if necessary, and if this is not enough I'll look for an au pair. I never cease to be amazed at what a well informed and supportive bunch you Semi-Colons are!

I saw the surgeon today (four weeks two days since surgery) and he's signed me off. I'm allowed to drive again and even do some gentle exercises at the gym (no abdominal crunches for another two weeks!).

All the best

Catherine

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

I was on the FLOFOX regime for 6 treatments out of 12. I was taking every other week. You will be taking the same treatment as I was. Side effects depend on the individual as each person is different according to their DNA. Some of the side effects I had were:

Flushing of face and neck
Tingling of hands and feet
Cold sensivity to weather, food and beverages
Saw pain/first chew snydrome
Low white cell counts
Red blood cells slowly declined
Upper GI burning feeling - took Nexium 20mg
No nauesa - took steriods before each treatment
Tingling of nose, mouth and throat

Keep in mind that some of these side effects were from accumlating affect. Showed-up after several treatments.

I was lucky and did not get tired or fatigued during treatments. Everyone I spoke with and talked to all stated that excersing was a very good thing and sometimes helped with the fatigue. Doctors will also state to try and keep your life as normal as possible.

My God give you the guidance and strength you are looking for during this time in your life.

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