folfox??
Melanie
Comments
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Melanie.......What are his symptoms ?
Folfox is cumulative meaning it will accumulate as it doesn't get out of the system before it is time again for another infusion...Tell me what has changed to make the 5th one better than the 4th was. Different meds? Lets talk about it for a bit...I did the Folfox 7 months ago so I have a few answers for ya......Buzzard0 -
with 4 he had alot ofBuzzard said:Melanie.......What are his symptoms ?
Folfox is cumulative meaning it will accumulate as it doesn't get out of the system before it is time again for another infusion...Tell me what has changed to make the 5th one better than the 4th was. Different meds? Lets talk about it for a bit...I did the Folfox 7 months ago so I have a few answers for ya......Buzzard
with 4 he had alot of nausea(which he as not had up til then) and extremely dehydrated.. number 5 he just feels real wore out..0 -
Nausea was my worst enemyMelanieT said:with 4 he had alot of
with 4 he had alot of nausea(which he as not had up til then) and extremely dehydrated.. number 5 he just feels real wore out..
I had more trouble with controlling nausea than anything else. I started with Compazine, it didn't help, the Zofran, nope, then Anzemet, nope, then Emend, the big gun but it didn't completely remove it but did help somewhat. Dehydration is a constant fight. It is when you don't feel like drinking anything because of nausea and anything cold hurts so lukewarm water will hydrate you but tastes nasty so try to take many small sips all during the week of infusion , you have to hydrate yourself or its hospital and IVs to do it for you. I could do Sunkist Orange out of a 2 liter bottle at lukewarm temps and I drank a lot of it. I could tolerate it better than anything else. It was usually about a week before I could drink my coffee again (coffeeholic)....What type of nausea meds is he taking ?
and the wore out will just keep getting a little worse each time....walking helps to keep up the strength . He will lose almost all of his strength during this chemo period but i am getting a lot of mine back now after 7 months out.....I was shot also, tired all the time...0 -
he is on Zofran right now..Buzzard said:Nausea was my worst enemy
I had more trouble with controlling nausea than anything else. I started with Compazine, it didn't help, the Zofran, nope, then Anzemet, nope, then Emend, the big gun but it didn't completely remove it but did help somewhat. Dehydration is a constant fight. It is when you don't feel like drinking anything because of nausea and anything cold hurts so lukewarm water will hydrate you but tastes nasty so try to take many small sips all during the week of infusion , you have to hydrate yourself or its hospital and IVs to do it for you. I could do Sunkist Orange out of a 2 liter bottle at lukewarm temps and I drank a lot of it. I could tolerate it better than anything else. It was usually about a week before I could drink my coffee again (coffeeholic)....What type of nausea meds is he taking ?
and the wore out will just keep getting a little worse each time....walking helps to keep up the strength . He will lose almost all of his strength during this chemo period but i am getting a lot of mine back now after 7 months out.....I was shot also, tired all the time...
he is on Zofran right now.. He has a colostomy and an illiostomy so keeping him hydrated is SO hard!! We have to do fluids once a week no matter what.. I just think if treatment 5 is hard what will 12 be like? He is stage 3c with 8 of 20 lymph nods positive. Surgery to remove the tumor.The dr said there is an 80% chance it is in his lungs and or liver. His tumor was so border line that pathology put undetermined as to it being rectal cancer as well. The dr has not deciced if he will do radiation also.. I am just so confused0 -
If the Zofran isn't cutting it ask the Dr for emend.....MelanieT said:he is on Zofran right now..
he is on Zofran right now.. He has a colostomy and an illiostomy so keeping him hydrated is SO hard!! We have to do fluids once a week no matter what.. I just think if treatment 5 is hard what will 12 be like? He is stage 3c with 8 of 20 lymph nods positive. Surgery to remove the tumor.The dr said there is an 80% chance it is in his lungs and or liver. His tumor was so border line that pathology put undetermined as to it being rectal cancer as well. The dr has not deciced if he will do radiation also.. I am just so confused
It should do the trick for the nausea.....and for me except for the tiredness and the neuropathy the 5th was the same as the 10th...He should have all of the side effects that he will get except for nerve damage(temporary or permanent)neuropathy in his fingers and toes...I stopped the Oxaliplatin after the 10th treatment because of the feet starting to hurt somewhat and walking was getting a little tough. First of all breathe again. John gave you sound advice while ago as well about hydration. I have the colostomy but not the illeostomy so I didn't have the hydration issues that your husband has...the emend if you can get it will really help his nausea. and his treatments shouldn't get much worse for wear except to keep check on the neuropathy that the Oxy causes. he can then finish with straight leucouvorin and 5fu for the last ones...Yeah, I would try and get him a second and maybe a third opinion on his stage and treatment plans... There are some great cancer specialists out there...don't settle for 2nd best.....the oncologists will guide you along the path to make it as easy on you and family as possible. Find you an Oncologists or a team that you place all your trust in and let them lead you through the journey. and most of all be patient, it will take a while to get where you want to be, take it slow, and enjoy every minute you can with each other cause we're never guaranteed a minute...Lots of love and hugs and hope....Buzzard0 -
EmendBuzzard said:If the Zofran isn't cutting it ask the Dr for emend.....
It should do the trick for the nausea.....and for me except for the tiredness and the neuropathy the 5th was the same as the 10th...He should have all of the side effects that he will get except for nerve damage(temporary or permanent)neuropathy in his fingers and toes...I stopped the Oxaliplatin after the 10th treatment because of the feet starting to hurt somewhat and walking was getting a little tough. First of all breathe again. John gave you sound advice while ago as well about hydration. I have the colostomy but not the illeostomy so I didn't have the hydration issues that your husband has...the emend if you can get it will really help his nausea. and his treatments shouldn't get much worse for wear except to keep check on the neuropathy that the Oxy causes. he can then finish with straight leucouvorin and 5fu for the last ones...Yeah, I would try and get him a second and maybe a third opinion on his stage and treatment plans... There are some great cancer specialists out there...don't settle for 2nd best.....the oncologists will guide you along the path to make it as easy on you and family as possible. Find you an Oncologists or a team that you place all your trust in and let them lead you through the journey. and most of all be patient, it will take a while to get where you want to be, take it slow, and enjoy every minute you can with each other cause we're never guaranteed a minute...Lots of love and hugs and hope....Buzzard
I also take Emend. It is very helpful. I also get an IV does of Ativan and an infusion of Olaxi (SP) at the beginning of my treatments and then again when I have the 5-FU pump removed. I take Ativan 1mg at bedtime for 4 nights during treatment and have Zofran and Phenergan just incase, but usually don't have to do those.
I try very hard to stay hydrated. Warm stuff is yucky but it is what we have to work with, and I drink what every I can get down, sometimes water with a bit of lemon is the best. I choose foods when I can eat that have alot of water or fluids such as oat meal. My biggest problem is getting past the food smells.
To help with that my husband brews his coffee in the garage and there is no cooking during treatments. That has been very helpful (Lucky that we just had Thanksgiving because it is treatment time and my family has leftovers!!!)
Take care,
Jan0 -
I did folfox 3 1/2 years agothready said:Emend
I also take Emend. It is very helpful. I also get an IV does of Ativan and an infusion of Olaxi (SP) at the beginning of my treatments and then again when I have the 5-FU pump removed. I take Ativan 1mg at bedtime for 4 nights during treatment and have Zofran and Phenergan just incase, but usually don't have to do those.
I try very hard to stay hydrated. Warm stuff is yucky but it is what we have to work with, and I drink what every I can get down, sometimes water with a bit of lemon is the best. I choose foods when I can eat that have alot of water or fluids such as oat meal. My biggest problem is getting past the food smells.
To help with that my husband brews his coffee in the garage and there is no cooking during treatments. That has been very helpful (Lucky that we just had Thanksgiving because it is treatment time and my family has leftovers!!!)
Take care,
Jan
I did folfox 3 1/2 years ago (12 treatments)the neuropathy was worse for me than the nausea-
zofran took care of most of that.I could not eat or touch anything that was not room temp or warmer.i wore thin gloves covered with surgical gloves to handle things from the fridge or freezer when I cooked.Also the muscle cramps in my hands were painful.The good was folfox completly got rid of a large tumour in my liver.but I got thru and so will your husband.just hang in there.
I have an illeostomy and it is difficult to keep hydrated.I used to live in colorado and was always hiking and stuff and because the air is so dry,you get used
to keeping a water bottle on you at all times and its always warm.That's what i still do and constantly sip from it all day.you need at least 2 quarts of liquid a day.
Remember caffeine is a diuretic and will dehydrate you so if you use caff,compensate with more water.
I did not know you could have a colostomy AND an illeostomy.
Good luck and GOD bless
Kate0 -
thanks for all your input..KATE58 said:I did folfox 3 1/2 years ago
I did folfox 3 1/2 years ago (12 treatments)the neuropathy was worse for me than the nausea-
zofran took care of most of that.I could not eat or touch anything that was not room temp or warmer.i wore thin gloves covered with surgical gloves to handle things from the fridge or freezer when I cooked.Also the muscle cramps in my hands were painful.The good was folfox completly got rid of a large tumour in my liver.but I got thru and so will your husband.just hang in there.
I have an illeostomy and it is difficult to keep hydrated.I used to live in colorado and was always hiking and stuff and because the air is so dry,you get used
to keeping a water bottle on you at all times and its always warm.That's what i still do and constantly sip from it all day.you need at least 2 quarts of liquid a day.
Remember caffeine is a diuretic and will dehydrate you so if you use caff,compensate with more water.
I did not know you could have a colostomy AND an illeostomy.
Good luck and GOD bless
Kate
thanks for all your input.. he has both but the colostomy we just cap now that he has the other. He can try to have them reversed after he does his 6 months and if he gets a good scan back. He cant be on chemo when they do the surgery..0 -
thats good to hear. I wasBuzzard said:If the Zofran isn't cutting it ask the Dr for emend.....
It should do the trick for the nausea.....and for me except for the tiredness and the neuropathy the 5th was the same as the 10th...He should have all of the side effects that he will get except for nerve damage(temporary or permanent)neuropathy in his fingers and toes...I stopped the Oxaliplatin after the 10th treatment because of the feet starting to hurt somewhat and walking was getting a little tough. First of all breathe again. John gave you sound advice while ago as well about hydration. I have the colostomy but not the illeostomy so I didn't have the hydration issues that your husband has...the emend if you can get it will really help his nausea. and his treatments shouldn't get much worse for wear except to keep check on the neuropathy that the Oxy causes. he can then finish with straight leucouvorin and 5fu for the last ones...Yeah, I would try and get him a second and maybe a third opinion on his stage and treatment plans... There are some great cancer specialists out there...don't settle for 2nd best.....the oncologists will guide you along the path to make it as easy on you and family as possible. Find you an Oncologists or a team that you place all your trust in and let them lead you through the journey. and most of all be patient, it will take a while to get where you want to be, take it slow, and enjoy every minute you can with each other cause we're never guaranteed a minute...Lots of love and hugs and hope....Buzzard
thats good to hear. I was worried new things would come up with each treatment.. He gets fluids once a week to help..It seems that everyone is so young and dealing with this.. Im 34 and feel like it has aged me years since we found out.. i cant even begin to imagine how he feels and its hard to not be able to do anything for him.. I am staying positive, but the word Cancer is so scary in its self..
Loves,
Melanie0 -
Melanie TMelanieT said:thanks for all your input..
thanks for all your input.. he has both but the colostomy we just cap now that he has the other. He can try to have them reversed after he does his 6 months and if he gets a good scan back. He cant be on chemo when they do the surgery..
I wasn't signing off on you on my last post..I just did the "politically correct" LOL ending...I have all the time in the world to answer or try to answer any questions you have , any at all, you'll find that this bunch doesn't cull anything. We talk about everything from E.D. to the Atlantic Ocean so if you have a question don't be bashful, throw it in the ring............Buzzard0 -
he does the iv nausea medsthready said:Emend
I also take Emend. It is very helpful. I also get an IV does of Ativan and an infusion of Olaxi (SP) at the beginning of my treatments and then again when I have the 5-FU pump removed. I take Ativan 1mg at bedtime for 4 nights during treatment and have Zofran and Phenergan just incase, but usually don't have to do those.
I try very hard to stay hydrated. Warm stuff is yucky but it is what we have to work with, and I drink what every I can get down, sometimes water with a bit of lemon is the best. I choose foods when I can eat that have alot of water or fluids such as oat meal. My biggest problem is getting past the food smells.
To help with that my husband brews his coffee in the garage and there is no cooking during treatments. That has been very helpful (Lucky that we just had Thanksgiving because it is treatment time and my family has leftovers!!!)
Take care,
Jan
he does the iv nausea meds as well and at first they seemed to help but the last few treatments it just seems like there is more nausea.. He really has kept a good appetite and smells are not too bad for him.. the touch of anything cold is very painful but we expected that..
loves,
Melanie0 -
Its just a word............MelanieT said:thats good to hear. I was
thats good to hear. I was worried new things would come up with each treatment.. He gets fluids once a week to help..It seems that everyone is so young and dealing with this.. Im 34 and feel like it has aged me years since we found out.. i cant even begin to imagine how he feels and its hard to not be able to do anything for him.. I am staying positive, but the word Cancer is so scary in its self..
Loves,
Melanie
There is also a thread for caregivers on here also. Be sure to take care of yourself as well. It does take a toll on everyone involved so be aware of your own feelings as well as hubbies.......Loves back to you both.......Buzzard
PS ...stay off the internet for info. it is 2-5 years behind and recovery rates are much better than they use to be...If you need anything at all get it here , not on some other website.....cause we are the shizzle !!!!.....LOL.......{{{{{hugs}}}}}0 -
LOL i second that.. If iBuzzard said:Its just a word............
There is also a thread for caregivers on here also. Be sure to take care of yourself as well. It does take a toll on everyone involved so be aware of your own feelings as well as hubbies.......Loves back to you both.......Buzzard
PS ...stay off the internet for info. it is 2-5 years behind and recovery rates are much better than they use to be...If you need anything at all get it here , not on some other website.....cause we are the shizzle !!!!.....LOL.......{{{{{hugs}}}}}
LOL i second that.. If i went by what the internet says about half the stuff that has went wrong so far, he should already be dead...i believe in one thing, that we will fight this together as hard as we can. .. thanks for being here, i need this so much0 -
Simply a keystroke away..........MelanieT said:LOL i second that.. If i
LOL i second that.. If i went by what the internet says about half the stuff that has went wrong so far, he should already be dead...i believe in one thing, that we will fight this together as hard as we can. .. thanks for being here, i need this so much
Bring hubby into this also. He needs some cheering up as well im sure...0 -
It does age you veryMelanieT said:thats good to hear. I was
thats good to hear. I was worried new things would come up with each treatment.. He gets fluids once a week to help..It seems that everyone is so young and dealing with this.. Im 34 and feel like it has aged me years since we found out.. i cant even begin to imagine how he feels and its hard to not be able to do anything for him.. I am staying positive, but the word Cancer is so scary in its self..
Loves,
Melanie
It does age you very quickly.I am a little younger than you.I feel like I was aged 10 years older since my husband's diagnosis.I never had any wrinkles on my eyes before,but right after the diagnosis,I started to develop lots of wrinkles on my eyes,it was just horrible.My husband is also on folfox,he finished the third of 12.The second one hit on him badly,but somehow he was doing ok on the third one.Like Buzzard said,the orange juice really helps,my husband can even drink some cold orange juice and it didn't bother him.Orange also helps,when my husband doesn't feel like to eat fruit,I will still give him orange,and he eats.I also stew soup for my husband,when he doesn't feel like to eat,I give him soup with noodles,it helps.Hopefully the information will help you a little bit.Good luck with it.0 -
Eye wrinkles for you?Fight for my love said:It does age you very
It does age you very quickly.I am a little younger than you.I feel like I was aged 10 years older since my husband's diagnosis.I never had any wrinkles on my eyes before,but right after the diagnosis,I started to develop lots of wrinkles on my eyes,it was just horrible.My husband is also on folfox,he finished the third of 12.The second one hit on him badly,but somehow he was doing ok on the third one.Like Buzzard said,the orange juice really helps,my husband can even drink some cold orange juice and it didn't bother him.Orange also helps,when my husband doesn't feel like to eat fruit,I will still give him orange,and he eats.I also stew soup for my husband,when he doesn't feel like to eat,I give him soup with noodles,it helps.Hopefully the information will help you a little bit.Good luck with it.
I've had more gray hairs sprout on my head in the past month than I have in the past decade!!! I like to think we're getting wiser, rather than older - here's hoping :-)
Good luck Melanie. My husband was diagnosed in October, surgery almost three weeks ago and chemo most likely starting in the next few weeks (meeting the oncologist on Monday). Since I'm still new and learning, I probably can't offer much advice, but I'm always available to hear you out if you need to vent. Hugs and prayers to all! Tashina0 -
Tashina....TLG320 said:Eye wrinkles for you?
I've had more gray hairs sprout on my head in the past month than I have in the past decade!!! I like to think we're getting wiser, rather than older - here's hoping :-)
Good luck Melanie. My husband was diagnosed in October, surgery almost three weeks ago and chemo most likely starting in the next few weeks (meeting the oncologist on Monday). Since I'm still new and learning, I probably can't offer much advice, but I'm always available to hear you out if you need to vent. Hugs and prayers to all! Tashina
Me too! lots of little gray spikes on my head, but was happy to see some dark brown coming as well
Good Luck Melanie, lots of people on Folfox with bad neuro, I am on Folfiri, so haven't had that sympton, but it'll be ok
Hugsss!
~Donna0 -
FOLFOX
My case was different, I did 6 months FOLFOX before I did any surgery and I didn't have many fatigue issues. I was actually kayaking every day. I went 81 consecutive days leading up to my operation. After the operation, the kayaking slowed way down...
I'm sure Buzzard has been wondering "where's that pothead Phil?" Well, here I am.
If it is legal in your state, and even if it isn't, marijuana is the best anti-nausea medication I have found in my 5 1/2 years of doing chemo. It works for the nausea and for increasing the appetite. There, I said it.
It can be eaten with the same, but slower, result as smoking it. I did the emend thing and it was so-so but I could not see paying the $25 for 4 pills I had to pay. BTW, it's about $180 per pill w/o insurance. Certainly part of the problem of the "high" cost of health care.
If he's found something that works, great! If not, this is something to consider. It's not like being back in one's youth getting high for kicks, this is serious medicine that works wonders for so many of the negative side effects caused by chemo.
-phil0 -
I'm the other...PhillieG said:FOLFOX
My case was different, I did 6 months FOLFOX before I did any surgery and I didn't have many fatigue issues. I was actually kayaking every day. I went 81 consecutive days leading up to my operation. After the operation, the kayaking slowed way down...
I'm sure Buzzard has been wondering "where's that pothead Phil?" Well, here I am.
If it is legal in your state, and even if it isn't, marijuana is the best anti-nausea medication I have found in my 5 1/2 years of doing chemo. It works for the nausea and for increasing the appetite. There, I said it.
It can be eaten with the same, but slower, result as smoking it. I did the emend thing and it was so-so but I could not see paying the $25 for 4 pills I had to pay. BTW, it's about $180 per pill w/o insurance. Certainly part of the problem of the "high" cost of health care.
If he's found something that works, great! If not, this is something to consider. It's not like being back in one's youth getting high for kicks, this is serious medicine that works wonders for so many of the negative side effects caused by chemo.
-phil
"Pothead" and Phil is right about it, it does help alot! Helps me sleep too, but makes me eat wayyyy too much ice cream!!! I was gaining weight way to fast LOL....
Hugsss!
~Donna0
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