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Welcome
You will find many people that know what its like and probably many that are going through or have gone through what you have. There are the best people in the World right here. Again welcome, sorry you have to be here, but you found the best little secret in the world.
My prayers are with you and your treatment.
God Bless
Beth0 -
im not sure i will knowkhl8 said:Welcome,
what chemo are you
Welcome,
what chemo are you starting on? This will help those that have been on it to give you some guidance.
Kathy
im not sure i will know tomorrow. i know that ihave to have a port in, then i will have to put in at the hospital and then have the pump on me for 2 days. i will get the names and put let yal know. it is good to have someone to talk to about this.. thank you all0 -
HI
I am currently being treated for stage 3C Colon Cancer. I have a treatment every two weeks. I just finished my 5th out of 12 treatments. They call it FOLFOX, which is oxaliplatin/5FU/leucovorin. I go to the Oncology office for about 4 hours of infusion through the port in my chest. Then they send me home for about two days with a portable pump ( it is somewhat of a pain as you have to be very careful not to drop it or forget that you are hooked to it!! ) I have the pump removed at the office and go home. If you are on the Folfox, the biggest thing is that cold drinks can just about floor you. It feels like an electrical shock to your mouth! Touching metal or cold things is a whole new experience and you learn fast!!
As to side effects everyone is different, but they usually give you lots or prescriptions just in case you get nausea, mouth sores, etc. Unfortunately I had severe Nausea/vomiting that started after the pump was removed. It was very bad and I now have a Sancuso patch that I apply to my upper arm several day prior to Chemo and also an oral drug called Emend which I take for three days during the Chemo. Ask about free samples as these are very expensive drugs. My insurance was able to send me these two drugs through their mail service. I saved thousands of dollars!
Don't hesitate to let the nurses know if you are feeling bad or have bad side effects. Be persistant and make sure they don't tell you that you shouldn't be feeling that way!
I also had horrible trots and now have some side effects from the antinausea stuff! ( Still better than getting sick )
Fatigue has been a big issue, but I don't have anything I have to do, so resting is easy for me.
Just take each day as it comes! The Oncologist will be able to adjust your treatment to make you more comfortable!
Hoping for the best for you! Welcome to the club!0 -
You are not alone.jararno said:HI
I am currently being treated for stage 3C Colon Cancer. I have a treatment every two weeks. I just finished my 5th out of 12 treatments. They call it FOLFOX, which is oxaliplatin/5FU/leucovorin. I go to the Oncology office for about 4 hours of infusion through the port in my chest. Then they send me home for about two days with a portable pump ( it is somewhat of a pain as you have to be very careful not to drop it or forget that you are hooked to it!! ) I have the pump removed at the office and go home. If you are on the Folfox, the biggest thing is that cold drinks can just about floor you. It feels like an electrical shock to your mouth! Touching metal or cold things is a whole new experience and you learn fast!!
As to side effects everyone is different, but they usually give you lots or prescriptions just in case you get nausea, mouth sores, etc. Unfortunately I had severe Nausea/vomiting that started after the pump was removed. It was very bad and I now have a Sancuso patch that I apply to my upper arm several day prior to Chemo and also an oral drug called Emend which I take for three days during the Chemo. Ask about free samples as these are very expensive drugs. My insurance was able to send me these two drugs through their mail service. I saved thousands of dollars!
Don't hesitate to let the nurses know if you are feeling bad or have bad side effects. Be persistant and make sure they don't tell you that you shouldn't be feeling that way!
I also had horrible trots and now have some side effects from the antinausea stuff! ( Still better than getting sick )
Fatigue has been a big issue, but I don't have anything I have to do, so resting is easy for me.
Just take each day as it comes! The Oncologist will be able to adjust your treatment to make you more comfortable!
Hoping for the best for you! Welcome to the club!
You are not alone. Keep positive thoughts going and keep looking for the light at the end of the tunnel. It is tough but you can do it. We are here for you - so feel free to ask questions. There are great people here who will help you along the way.
Lizzy0 -
welcome
Hello and welcome to this board. As others have said, sorry you have reason to be here, but it's a great place to come to for support and information. I was diagnosed almost 3 yrs ago, but have just been coming to the board for a year and a half. Wish I found it sooner, but glad I found it. A LOT of the information I've learned has been here on the board. You ask questions and people give their suggestions of what they are doing, what their oncologist said, etc. I've taken quite a few ideas from this board to my oncologist- so he's learned from others here, too!
The chemo you're on (it sounds like either Folfox or Folfiri- both use the pump) won't be easy (I've done both), but you will get through it. I found Folfiri a bit easier than Folfox- most oncs use Folfox at first. If that's what you're on, dealing with the oxaliplatin will be the toughest. That's the one that causes oversensitivity to cold, numbness, among other things. There are things you can do to reduce the longterm effects re. the numbness, tingling sensation. First of all, ask about getting a calcium and magnesium combo infused at the same time you're getting the chemo. I never got that, but heard it's something they now can do and it does help. Also, take B-6 and alpha lipoic acid in capsule form. The nurse practitioner at my chemo clinic told me about taking those. For mouth sores, swish L-glutamine powder in your mouth with water. That was amazing how much it helped. Also- drink some and it coats the inside of your digestive tract and helps with rawness and burning feeling you may get from the 5FU pump. For dry hands and feet (which you may not notice until your 2nd or 3rd treatment), keep some heavy duty lotion around and apply it liberally. I found Udderly Smooth works really well. Hopefully, you are getting Emend for the nausea. It comes in 3 pill/day supply. It's expensive, so hopefully your insurance covers it. If not, I've discovered it helps to ask at your oncology office/chemo center- sometimes folks donate their unused meds like this. I know one time when the insurance delayed me getting my Emend on time, my chemo nurses gave me a donated pill. I later paid it back by replacing it with one I had and no longer needed.
Come here with any questions you have- no subjects are too gross or embarrassing- with this kind of cancer, we've all bared it all and discussed it all.
Take care and best wishes as you go through treatment.
Lisa0 -
hi all well i start chemokhl8 said:Welcome,
what chemo are you
Welcome,
what chemo are you starting on? This will help those that have been on it to give you some guidance.
Kathy
hi all well i start chemo on the 14th he said i will be getting "folfox" it includes oxaliplatin,ifux, and levcoudi. if anyone has any help or tips please tell me... thank you0 -
it sounds like i will bejararno said:HI
I am currently being treated for stage 3C Colon Cancer. I have a treatment every two weeks. I just finished my 5th out of 12 treatments. They call it FOLFOX, which is oxaliplatin/5FU/leucovorin. I go to the Oncology office for about 4 hours of infusion through the port in my chest. Then they send me home for about two days with a portable pump ( it is somewhat of a pain as you have to be very careful not to drop it or forget that you are hooked to it!! ) I have the pump removed at the office and go home. If you are on the Folfox, the biggest thing is that cold drinks can just about floor you. It feels like an electrical shock to your mouth! Touching metal or cold things is a whole new experience and you learn fast!!
As to side effects everyone is different, but they usually give you lots or prescriptions just in case you get nausea, mouth sores, etc. Unfortunately I had severe Nausea/vomiting that started after the pump was removed. It was very bad and I now have a Sancuso patch that I apply to my upper arm several day prior to Chemo and also an oral drug called Emend which I take for three days during the Chemo. Ask about free samples as these are very expensive drugs. My insurance was able to send me these two drugs through their mail service. I saved thousands of dollars!
Don't hesitate to let the nurses know if you are feeling bad or have bad side effects. Be persistant and make sure they don't tell you that you shouldn't be feeling that way!
I also had horrible trots and now have some side effects from the antinausea stuff! ( Still better than getting sick )
Fatigue has been a big issue, but I don't have anything I have to do, so resting is easy for me.
Just take each day as it comes! The Oncologist will be able to adjust your treatment to make you more comfortable!
Hoping for the best for you! Welcome to the club!
it sounds like i will be going through what you are.. thank you for the info anymore tips wpuld be helpful...im alittle scared... thank you0 -
questionslisa42 said:welcome
Hello and welcome to this board. As others have said, sorry you have reason to be here, but it's a great place to come to for support and information. I was diagnosed almost 3 yrs ago, but have just been coming to the board for a year and a half. Wish I found it sooner, but glad I found it. A LOT of the information I've learned has been here on the board. You ask questions and people give their suggestions of what they are doing, what their oncologist said, etc. I've taken quite a few ideas from this board to my oncologist- so he's learned from others here, too!
The chemo you're on (it sounds like either Folfox or Folfiri- both use the pump) won't be easy (I've done both), but you will get through it. I found Folfiri a bit easier than Folfox- most oncs use Folfox at first. If that's what you're on, dealing with the oxaliplatin will be the toughest. That's the one that causes oversensitivity to cold, numbness, among other things. There are things you can do to reduce the longterm effects re. the numbness, tingling sensation. First of all, ask about getting a calcium and magnesium combo infused at the same time you're getting the chemo. I never got that, but heard it's something they now can do and it does help. Also, take B-6 and alpha lipoic acid in capsule form. The nurse practitioner at my chemo clinic told me about taking those. For mouth sores, swish L-glutamine powder in your mouth with water. That was amazing how much it helped. Also- drink some and it coats the inside of your digestive tract and helps with rawness and burning feeling you may get from the 5FU pump. For dry hands and feet (which you may not notice until your 2nd or 3rd treatment), keep some heavy duty lotion around and apply it liberally. I found Udderly Smooth works really well. Hopefully, you are getting Emend for the nausea. It comes in 3 pill/day supply. It's expensive, so hopefully your insurance covers it. If not, I've discovered it helps to ask at your oncology office/chemo center- sometimes folks donate their unused meds like this. I know one time when the insurance delayed me getting my Emend on time, my chemo nurses gave me a donated pill. I later paid it back by replacing it with one I had and no longer needed.
Come here with any questions you have- no subjects are too gross or embarrassing- with this kind of cancer, we've all bared it all and discussed it all.
Take care and best wishes as you go through treatment.
Lisa
i go to chemo on the 14th of july, is there anything else that you can tell me to ask about that might help me? i want to be ready when i go in there. i am going to ask about the stuff you mention in your reply. thank you for any info i have a list of questions to ask them. this is the best place that i could have found. all of yal are wonderful. thank you so much0 -
Make sure you have antiatrue said:questions
i go to chemo on the 14th of july, is there anything else that you can tell me to ask about that might help me? i want to be ready when i go in there. i am going to ask about the stuff you mention in your reply. thank you for any info i have a list of questions to ask them. this is the best place that i could have found. all of yal are wonderful. thank you so much
Make sure you have anti nausea meds when you leave for at home. I personally never got sick but some have. do you have a port? If so, wrap a piece of tape around the tubing like a flag, then put a saftey pin on the flag part and pin to the inside of your clotes, this way if you forget and walk away from the pump or anything, it will pull on your clothes instead of the port site.
Take something to eat and drink with you, and a book or something.
Kathy0 -
You might get a nasty sensation when you first bite on food atkhl8 said:Make sure you have anti
Make sure you have anti nausea meds when you leave for at home. I personally never got sick but some have. do you have a port? If so, wrap a piece of tape around the tubing like a flag, then put a saftey pin on the flag part and pin to the inside of your clotes, this way if you forget and walk away from the pump or anything, it will pull on your clothes instead of the port site.
Take something to eat and drink with you, and a book or something.
Kathy
the back of your jaws.....take that first bite or two, the feeling will esae after a few seconds and then try chewing again--that worked for me.....Stay away from all things cold while on FOLFOX (esp due to the oxi part),use gloves to touch cold items but do not eat or drink cold things as your throat will feel like its closing, among other seanations you do not want.....This regimen is doable tho some of us have problems as it continues....always let your onc know ASAP_of any difficulties you encounter-fatigue,naseaua. diarrhea,neuroapthy. LOSS OF appetite, difficulty sleeping,etc. Responsiveness to chemo is an individual thing, varies person to person, tumor to tumor......Best of results....steve0 -
make sure you ask your onc,atrue said:it sounds like i will be
it sounds like i will be going through what you are.. thank you for the info anymore tips wpuld be helpful...im alittle scared... thank you
make sure you ask your onc, about imodium for the diarrhea, you do not want to suffer from a lot of that, and the imodium pills at my onc's suggestion work VERY well. I also got baby wipes for my sore rear end, but discovered it hurt my fingers to touch the cold baby wipes, then my grandson was born and they gave me an extra "baby wipe WARMER", who knew such things existed!!! What a difference the warmer makes.
Make sure you have some gloves if you live out here on the west coast (I live by the ocean our high was 58 degrees while the rest of the nation was suffering heat waves.) so if it gets cold, hopefully you can prevent that.
Hopefully your Onc, sends you to Chemo 101 like mine did, you learn a lot there, if it's offered GO please, it will help you immensely.
Some of us suffer jaw pain, but it only lasts usually from the first couple of chews of your food each time, then stays away as long a you are eating. It only lasts for a couple of days, maybe a little more depending on your case (mine's about 6 days).
I suggest a soft toothbrush and sensodyne toothpaste, I just switched to sensodyne a couple of weeks ago and my teeth feel better, mostly gum problems from my chemo's. If you have any teeth that need attention GET IT DONE BEFORE CHEMO starts.
Other's I'm sure have more and perhaps better suggestions. I just finished my 7th round of chemo yesterday.0 -
I have been threw it twice.atrue said:questions
i go to chemo on the 14th of july, is there anything else that you can tell me to ask about that might help me? i want to be ready when i go in there. i am going to ask about the stuff you mention in your reply. thank you for any info i have a list of questions to ask them. this is the best place that i could have found. all of yal are wonderful. thank you so much
I have been threw the chemo twice. I bring word games and my DS. I play games all the time. I tried my laptop, but it was to heavy and I was not feeling much like carring alot of stuff. I was on several anti nausea meds. I liked the Emend the best. I had a reaction to one of the chemo durgs, they took me off of that one and put me on another. I have been in the hospital twice for colon cancer and once for a biopsey. I went every other week and worked in between treatments. I didn't feel great, but managed.
The anti nausea med helped me the most. I did gain weight. Most loose weight.
I am waiting for the next shoe to drop. They just found cancer agan.
good luck.
God bless you.0 -
This comment has been removed by the ModeratorEJmauldin said:I have been threw it twice.
I have been threw the chemo twice. I bring word games and my DS. I play games all the time. I tried my laptop, but it was to heavy and I was not feeling much like carring alot of stuff. I was on several anti nausea meds. I liked the Emend the best. I had a reaction to one of the chemo durgs, they took me off of that one and put me on another. I have been in the hospital twice for colon cancer and once for a biopsey. I went every other week and worked in between treatments. I didn't feel great, but managed.
The anti nausea med helped me the most. I did gain weight. Most loose weight.
I am waiting for the next shoe to drop. They just found cancer agan.
good luck.
God bless you.0
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