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1st FOLFOX, What Can I Expect?

Mickeyw
Posts: 28
Joined: Jan 2007

I am getting the first of 12 bimonthly folfox treatments tomorrow. Am wondering what to expect during or after this first treatment, if anyone has the time to elaborate on their experiences. Wondering such things as immediate side effects, or whatever the new guy needs to know up front, other than possible side effects. I know those by heart. Thanks
Mickey

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Everyone has some variation in reactions but there are some common elements. The first is the sensitivity to cold, especially cold liquids. For the initial several treatments, for me, that just lasted about 3 days and then I could resume cold liquids but after about the 4th cycle it lasted for over a week. The "first bite syndrome" also occurs with the initial cycles although I didn't notice it after about the 6th cycle. You get a sort of cramp in your jaw when you first start chewing. I found it helpful to clamp down first before I started chewing and it seemed to be less of a problem. I got a pair of golf gloves to wear in the house when I had to take something out of the refrigerator or freezer. You will also likely notice some fatigue. I found that getting some exercise, but of course also naps, helped.

Peripheral neuropathy of the hands and feet is probably the most bothersome symptom and is why I quit after 9 cycles. It is not too bad for the first few cycles but then generally gets more noticeable. At first it gives you numbness and tingling in the fingertips and toes. It may progress to outright pain in those areas. Generally my fingers still tingle and my feet feel somewhat like wood 3 months after I stopped chemo although I do think it is improving now.

Others will likely share their symptoms as well. Good luck and feel free to keep asking questions.

Dick

Frances4
Posts: 5
Joined: Feb 2007

To vinny3/Dick. You mentioned the "first bite syndrome" and that is the first time that I have seen it mentioned anywhere. I have had that with my first two Folfox sessions. I believe my doctor is going to discontinue the Oxaliplatin, believing that is the cause. It has been quite painful. Very frustrating to not know what causes it and not finding any information on it. So thanks for at least letting me know what others call it. I described it as being like "lock jaw", whatever that is. I'm new to this message board but feel that I will be using it a lot.Thanks. Fran

Sam725
Posts: 87
Joined: Nov 2006

Hi Mickey,
My husband is starting his 3rd round of FOLFOX today. The first thing you do is see the doc and discuss how you are feeling, blood is done, and then you meet your nurse and get hooked up. The first day my husband gets his steroids which seem to make him have hot flashes! his anti nausua and some vitamin they give you plus he is hooked up to his pump. This takes about 3 hours. He feels pretty good (steroids are a wonderful thing, make you hungry and give you energy). Thursday morn he has had a little nausua but other than that he is okay, gets his vitiman and continues with the pump takes about 1 hour. Friday morn he notices the tingling in his hands and feet and is sensitive to the cold quite a bit (he works out doors so it's not a good thing!)Friday he is unhooked from the pump and home he comes. He is pretty tired on Friday night and sleeps all day Saturday and Sunday with a little nausua, doesn't eat much on the weekend but I push little things down him for energy and lots of water too. The first treatment it took a couple days to shake off and he felt pretty good by Tuesday, 2nd treatment he pretty much felt the same way but the cold sensitivity got a little worse and he couldn't shake the tiredness till the next Friday. We'll see how this one goes. Ask alot of questions, the nurses are wonderful they explain everything if you ask. If it's cold where you are make sure to bring gloves and a scarf so you can cover up (it's 5 here today with the wind chill).And don't forget everyone is here to answer what we can. I love this board and thank god for it everyday, it has helped us both deal with this adventure so much better because we know things before they happen ( fear of the unknown is the worst!). Good luck and look at it the way my husband and I have 3 down and 9 to go! Sandy

taraHK
Posts: 1961
Joined: Aug 2003

Hi Mickey,
I agreee with what the others have said. Just a couple of other points to add: there are many anti-nausea medications out there. So, if you do experience nausea and the meds don't seem to be helping much, ask to try different meds. Also, a couple of weird side effects which aren't often reported -- I sometimes have 'laryngitis' for a couple of days -- and I know others have too. Also, I've had swollen lips (hey, some women pay a lot of money for that!). Both of these are due to the Oxaliplatin in the FOLFOX. Neither are a problem, really, but just to give you a 'heads up'. Wishing you all the best with the FOLFOX. I completed 11/12 cycles a couple of years ago. I'm now on FOLFOX + Avastin. Two down, ?10 to go. Good luck.

levensweg
Posts: 55
Joined: Jul 2006

Aside from all the text book effects they talk about, neuropathy, fatigue etc. which seems to vary quite a bit in each person, I found myself very sensitive to foods. If I ate well and on schedule, I did well. Eating well helped me with naseau, fatigue, diahrea and so on. Brush up ,on your cooking skills and it will go a long way. Whenever I went out to dinner I was toast. It would usually wreck me with all the fat and oil and butter that is an inherent part of most restuarant food.

I would add that if you are very organized and stick to a schedule you should be able to anticapate what days you should and watch what you eat and then try to be as active as possible when you feel well. I believe that the more active you are (within reason of course), the faster you can rebound after each treatment.

Hope this helps,

Reuben

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

don't think I can add to the above, other than some of the anti-nausea meds they gave me had side effects of their own, and the only thing that helped my nausea was Ativan(Lorazepam), and there is a supplement (can't remember it's name)that is supposed to prevent/minimize neuroapathy..
someone here may know. Bud

Slyster
Posts: 8
Joined: Aug 2006

MickyW...I am female and had stage 3...I took 5FL and Levcovorin combo...and I think we all have different reactions to chemo. I kept a journal and a sense of humor through the whole process(thank God for that) I will share my feeling from that journal which was written after the first chemo treatment...

My Red Dancing Shoes

I think everyone should own a pair of red dancing shoes. It's not so much used for dancing but for having the courage to get onto the dance floor. We don't know what songs will be played in our lifetime but we had better be prepared to dance. Red shoes help. Red shoes will give you an attitude. You can't help but notice them. They sort of say 'here I am, deal with me'. Cancer teaches you how to deal very quickly. I put these shoes on when I went in to have my first Chemo session. The room was very sterile. Green lounge chairs that I would have sold at garage sale long ago stood silently awaiting its next patient. Sunshine crept very timidly through the windows into the room. Seated in some of the chairs were my soon to be comrades. I came in smiling sporting my red dancing shoes and determined to make the best of it. I asked all kinds of questions of the nurses there. Where is this, what is that? How long? Patients looked at me and probably said, "Who is this woman wearing red dancing shoes?" I introduced myself to the patients and wanted to know about their ordeal. Maybe, just maybe, I would learn something from their experience with Chemo. I picked out my royal throne and sat down anxiously awaiting my destiny. My body sank into its green leather and it was more comfortable than I thought. Although, I don't think any one can get completely comfortable in that room. My eyes scanned the room. In the right corner of the room, I saw tons of books. I surely hoped these nurses had read them all. That was also the area where they kept the drugs. I had already informed myself of what drug I would be taking. (Thanks to a son-in-law that worked at MD and researched cancer). God is good! When she came to me to attach me to my lifeline, I asked what I was taking (checking up on her) and how much. I had already spoken to my oncologist and told him that I don't need as much because my body is sensitive to medications. He didn't listen. I should have whacked him with my red shoe. There was a small table set up with snacks. I thought for a moment as to when I would be hungry enough for a snack. You are a bit anxious at that moment and food is not what you are thinking of. The nurse found the blue vein in my right arm inside of the elbow. Little did I know at the time that it would be asked to carry me though six months of chemo. You never give a second thought to those little encased rivers unless you think you are drowning. It was show time and I looked at my red shoes. I was ready. Hell, you can do anything with red shoes on. I got though it, I made new friends and I made it known that I am not a quiet one. I will ask questions, I will make sure you know what you are doing and I will survive. I left feeling very satisfied with myself. This wasn't so hard I thought. I can hang. Unattached I sprang from the chair wanting to sport my red shoes in celebration of my first experience with this environment that would be part of my life now. I was not about to peer into the future. I could only handle today and my red shoes would have to wait for the next performance.

I am an eight year survivor...

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