Folfox- Ability to travel, taste foods, stand in cold??
Folfox- Ability to travel, taste foods, stand in cold??
This is in response to the working topic and the folfox side effects. I am going to start Folfox after surgery (April). I'll be on it for 6 months. I am trying to decide if I can work during this time. Right now I am on disability and medical leave since I am getting my radiation and first round of chemo and surgery in LA. I work in the food industry in Denver and my job involves traveling about twice a month (by plane), standing in production plants that are sometimes at refrigeration temperature or freezing temperature, tasting food, and some desk work. Was anyone able to travel for work while on Folfox? Is it ok to be on a plane- just asking becuase a lot of times I get a cold or run down after being on the plane. One oncologist I met said people travel for work while on this but did anyone do that? I know you say your hands and feet get sensitive to the cold but how long are you able to tolerate it for? Is it ok to briefly step into a cold environment? Can you be in it for 30 min. or an hour? Is it tolerable? Did anyone lose their sense of taste? Some mentioned not being able to drink cold liquids but can you taste cold food or frozen food?
Michelle. Stage III rectal cancer. Diagnosed Dec. 27, 2006. 28 years old. Los Angeles, CA and Denver, CO.
Wow
Michelle,
I completed four months of Folfox4. I really have no point of reference about the tasting of food. Due to my inability to tolerate by mouth, I was on TPN for many months. I wish I could better assist you. I have heard though that some experience a metallic like taste. I am hopeful that others will be able to better answer this question for you.
About traveling. When I was most immuno compromised, I traveled via car. When it was necessary for me to travel by plane, I would take a couple precautions. If my white blood cell counts were low or borderline, I gave myself neulasta injections three days prior to travel to stimulate my white cell count. I also wore a surgical mask en route. So, it is possible to travel but you will need to be more mindful.
The sensation to cold. My biggest pearl of wisdom to you is warm, snuggly mittens and socks are priceless. Have you ever experienced frost bite? Or even the sensation of grabbing something frozen out of the freezer and it tingles? The cold sensation is a bit like that. The neuropathies in the hands and feet also include a pins and needles like feeling. Hum, know when you cross you legs and you foot falls asleep? Starts with the pins and tingling and then it goes numb. The experience is similar but will last a bit longer. I presume that your medical team has advised you that the oxiplatin has a cumulative effect. This simply means that the drug has a half life of 15 days +/-. You will likely get a round at day 14, so you will have remaining drug in your system and with time it builds on to itself. Each of our experiences are different. I received 8 rounds of oxi and the neuropathies subsided in about 75 days after my last round. I was told not to drink cold drinks either. But...For the sake of writing the experience down in my journal and being able to answer a question like yours, I tried it. It gets your attention and only took one time. It burns and feels much like what I described above. Since I have admitted to doing it, who am I to tell you what to do. As to how long you can tolerate the neuropathies. Each of our experiences are unique. I am not sure if hanging out in the sub-zero refrigerator is the best idea. But, too, you may tolerate such better than I would.
Michelle, I hope this helps. I wish you the very best on your continued journey and know that you will be in my thoughts and prayers.
Holly
I completed four months of Folfox4. I really have no point of reference about the tasting of food. Due to my inability to tolerate by mouth, I was on TPN for many months. I wish I could better assist you. I have heard though that some experience a metallic like taste. I am hopeful that others will be able to better answer this question for you.
About traveling. When I was most immuno compromised, I traveled via car. When it was necessary for me to travel by plane, I would take a couple precautions. If my white blood cell counts were low or borderline, I gave myself neulasta injections three days prior to travel to stimulate my white cell count. I also wore a surgical mask en route. So, it is possible to travel but you will need to be more mindful.
The sensation to cold. My biggest pearl of wisdom to you is warm, snuggly mittens and socks are priceless. Have you ever experienced frost bite? Or even the sensation of grabbing something frozen out of the freezer and it tingles? The cold sensation is a bit like that. The neuropathies in the hands and feet also include a pins and needles like feeling. Hum, know when you cross you legs and you foot falls asleep? Starts with the pins and tingling and then it goes numb. The experience is similar but will last a bit longer. I presume that your medical team has advised you that the oxiplatin has a cumulative effect. This simply means that the drug has a half life of 15 days +/-. You will likely get a round at day 14, so you will have remaining drug in your system and with time it builds on to itself. Each of our experiences are different. I received 8 rounds of oxi and the neuropathies subsided in about 75 days after my last round. I was told not to drink cold drinks either. But...For the sake of writing the experience down in my journal and being able to answer a question like yours, I tried it. It gets your attention and only took one time. It burns and feels much like what I described above. Since I have admitted to doing it, who am I to tell you what to do. As to how long you can tolerate the neuropathies. Each of our experiences are unique. I am not sure if hanging out in the sub-zero refrigerator is the best idea. But, too, you may tolerate such better than I would.
Michelle, I hope this helps. I wish you the very best on your continued journey and know that you will be in my thoughts and prayers.
Holly
I have taken 6 rounds of Oxiliplatin (3 week intrvals). The sensitivity for cold is less on the third week. You will want to schedule travel for the furthest point out from treatment.
My most sensitive area after 2 or 3 days is my face and finger tips.A lot of it is trial and error.I am exactly 2 weeks from last treatment.I had a few ice cubes in a large cup with my tea yesterday.First week after treatment I needed to add hot water to tap water.
(Tip) When ordering water in a restaurant make them use the tap.If you don't be specific they will pour it out of an ice pitcher.If you warn them not to do that they will go to plan B.(water spout on coke machine).No good either.
My most sensitive area after 2 or 3 days is my face and finger tips.A lot of it is trial and error.I am exactly 2 weeks from last treatment.I had a few ice cubes in a large cup with my tea yesterday.First week after treatment I needed to add hot water to tap water.
(Tip) When ordering water in a restaurant make them use the tap.If you don't be specific they will pour it out of an ice pitcher.If you warn them not to do that they will go to plan B.(water spout on coke machine).No good either.
Michelle
The effects of the Oxilaplatin got worse with each treatment for me. I could tolerate cold and even iced drinks AFTER day 4 or 5 of each treatment. I used gloved to get into the refrigerator or freezer or had hubby do it. In answer to your question about being out in the cold for 30 min. or more.....I sure wouldn't recommend it. If there is any breeze at all, it will feel like it is sleeting on your face or any exposed skin. While on the Oxilaplatin, you will be highly sensitive to cold.
I don't see why travel would be a problem if you felt up to it. You won't know how your body will react until you are on the Chemo a few times. Everyone is reacts differently to it. I worked full time in a clerical position and did fine as long as I came right home and slept for an hour or so, ate then right back to bed for the night. Some people exercise during their time on Chemo, but I was never able to do that because it took everything I had just to work full time. You will have to "listen to your body". If you feel tired then sleep, don't be trying to push yourself too hard.
As far as taste goes, I either had no taste at all or things tasted pretty yucky. Beef was the worst for me especially hot. It was really funny, I could taste things better if they were room temperature or cold!!! I ate a lot of cold cereals, poached eggs, room temp pizza. I just ate what tasted good to me during the Chemo and didn't watch what I ate. I found that food DID start tasting better for me when I started rinsing my mouth with BIOTENE several times a day. The Chemo can cause saliva gland disfunction and since these glands activate the taste buds, Biotene has antibacterial enzymes found naturally in human saliva which helps keep this in balance. You find it in the toothpaste section of Walmart.
Like I said, each individual is different so some of this might help you and some might not. Hang in there!! One day at a time!!!
Peg
The effects of the Oxilaplatin got worse with each treatment for me. I could tolerate cold and even iced drinks AFTER day 4 or 5 of each treatment. I used gloved to get into the refrigerator or freezer or had hubby do it. In answer to your question about being out in the cold for 30 min. or more.....I sure wouldn't recommend it. If there is any breeze at all, it will feel like it is sleeting on your face or any exposed skin. While on the Oxilaplatin, you will be highly sensitive to cold.
I don't see why travel would be a problem if you felt up to it. You won't know how your body will react until you are on the Chemo a few times. Everyone is reacts differently to it. I worked full time in a clerical position and did fine as long as I came right home and slept for an hour or so, ate then right back to bed for the night. Some people exercise during their time on Chemo, but I was never able to do that because it took everything I had just to work full time. You will have to "listen to your body". If you feel tired then sleep, don't be trying to push yourself too hard.
As far as taste goes, I either had no taste at all or things tasted pretty yucky. Beef was the worst for me especially hot. It was really funny, I could taste things better if they were room temperature or cold!!! I ate a lot of cold cereals, poached eggs, room temp pizza. I just ate what tasted good to me during the Chemo and didn't watch what I ate. I found that food DID start tasting better for me when I started rinsing my mouth with BIOTENE several times a day. The Chemo can cause saliva gland disfunction and since these glands activate the taste buds, Biotene has antibacterial enzymes found naturally in human saliva which helps keep this in balance. You find it in the toothpaste section of Walmart.
Like I said, each individual is different so some of this might help you and some might not. Hang in there!! One day at a time!!!
Peg
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