Had to change chemo treatment for the last two......
Comments
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Oxi
I feel for you, Buzz. The Oxi really did a number on my feet too... numb toes, nerve damage in the heels and the painful tingling shoots up both shins when I'm lying down. I, too, didn't tell anyone at the time because I just assumed that was one of the downsides of chemo (I didn't know about this board at that time)... but I finally had to say something when my balance was off because it felt like I was walking on stilts. When I did mention it, they immediately took me off the Oxi for the last 3 treatments and I just got the full dosage of 5FU and Leucouvrin.
Unfortunately, it's now 1 yr 4 months later and I still have the same problems... it never did go away in my feet and shins.
Hugggggs,
Cheryl0 -
Full dosage?CherylHutch said:Oxi
I feel for you, Buzz. The Oxi really did a number on my feet too... numb toes, nerve damage in the heels and the painful tingling shoots up both shins when I'm lying down. I, too, didn't tell anyone at the time because I just assumed that was one of the downsides of chemo (I didn't know about this board at that time)... but I finally had to say something when my balance was off because it felt like I was walking on stilts. When I did mention it, they immediately took me off the Oxi for the last 3 treatments and I just got the full dosage of 5FU and Leucouvrin.
Unfortunately, it's now 1 yr 4 months later and I still have the same problems... it never did go away in my feet and shins.
Hugggggs,
Cheryl
What is considered a full 5fu dosage...I usually wear a fanny pack for 3 days but what will that entail......?0 -
so sorryirene77 said:feet problem
Hi Bizzard
Sorry about your feet, guess its that neropthy, I only have it in my lips and very little in my hands, hope I never get it in my feet. Hope the next treatment is better for you.
praying for you, Irene
well darn its seems like if it aint one thing its another. i was hoping these last 2 would be smooth sailing for you. by the way i had my port put in today i am pretty sore hope i can sleep tonight.i will call onc tomorrow to see when i get to start my 12 treatments of fun, keep up the faith and God bless,,,,,johnnybegood0 -
Good for you bud.........johnnybegood said:so sorry
well darn its seems like if it aint one thing its another. i was hoping these last 2 would be smooth sailing for you. by the way i had my port put in today i am pretty sore hope i can sleep tonight.i will call onc tomorrow to see when i get to start my 12 treatments of fun, keep up the faith and God bless,,,,,johnnybegood
Trust me .... it will be over before ya know it......God Bless ya0 -
A lot of people have to stop
A lot of people have to stop the Oxi a little early (including me). Don't feel bad about that -- you've been a champ! And, there is no hard evidence that, say 12 is better than 10 (as far as I know -- and I researched this a while ago).
The 5FU plus leucovorin should be quite dreamy after the FOLFOX, although it may take a little while for those oxi side effects (neuropathy) to go away. My understanding is that common side effects for 5FU are mild nausea, mild diarrhea, mild fatigue. Some have hair thinning but not total hair loss.
Good luck!!
Tara0 -
Full dosageCherylHutch said:Oxi
I feel for you, Buzz. The Oxi really did a number on my feet too... numb toes, nerve damage in the heels and the painful tingling shoots up both shins when I'm lying down. I, too, didn't tell anyone at the time because I just assumed that was one of the downsides of chemo (I didn't know about this board at that time)... but I finally had to say something when my balance was off because it felt like I was walking on stilts. When I did mention it, they immediately took me off the Oxi for the last 3 treatments and I just got the full dosage of 5FU and Leucouvrin.
Unfortunately, it's now 1 yr 4 months later and I still have the same problems... it never did go away in my feet and shins.
Hugggggs,
Cheryl
I'm not sure the exact measurements... the dosage is based on your height/weight/etc. So a 5' woman weighing 120lbs is going to get less than a 6' male weighing 220 lbs. So, whatever my full dosage of 5FU/Leucouvrin was with the Oxi, when they removed the Oxi, they didn't lesson the 5FU/Leucouvrin. I still got my full allotment of that
And I have to say... the difference between the sessions with the Oxi and without, were like night and day!! Any discomfort/side affects I had had were all caused by the Oxi and as soon as that was taken away, the 5FU/Leucouvrin went as smooth as smooth can be! I also had the fanny pack/baby bottle pump for 3 days and other than it was a nuisance having to wear it for 48 hours, there was no pain, no nausea, nothing!
Hugggggs,
Cheryl0 -
5futaraHK said:A lot of people have to stop
A lot of people have to stop the Oxi a little early (including me). Don't feel bad about that -- you've been a champ! And, there is no hard evidence that, say 12 is better than 10 (as far as I know -- and I researched this a while ago).
The 5FU plus leucovorin should be quite dreamy after the FOLFOX, although it may take a little while for those oxi side effects (neuropathy) to go away. My understanding is that common side effects for 5FU are mild nausea, mild diarrhea, mild fatigue. Some have hair thinning but not total hair loss.
Good luck!!
Tara
my last 3 treatments have been the 5fu only and for me it has been a breeze too! Some fatique for a couple days, and a couple tiny blisters on fingers, but other than that it is like i am not even on chemo...i still go home with the pump for the 46 hours... the infusion is nice and quick that is for sure..out of there in an hour instead of 3.50 -
I go with the 5fu too....polarprincess said:5fu
my last 3 treatments have been the 5fu only and for me it has been a breeze too! Some fatique for a couple days, and a couple tiny blisters on fingers, but other than that it is like i am not even on chemo...i still go home with the pump for the 46 hours... the infusion is nice and quick that is for sure..out of there in an hour instead of 3.5
After my infusion of Avastin and the rest, they send me home with the 5fu pump as well, that I get disconnected after 46 hours as well, but my nausea is not mild with it, please make sure you get some good anti-nausea meds with that, I actually haven't had a side effect like mouth sores or anything either.. when they first push the first 5 minutes of 5fu in me, before starting me on the pump, they make me eat a popsicle or ice chips, which helps supposedly stop the start of mouth sores, and so far has worked. Now, I do have constipation right now which is killing me, so I wonder if that's a side effect, but trying to figure out what to do with that, since the stool softeners don't seem to be working, and I have blood in it from my hemorrhoids...0 -
It happens....
So sorry, Buzzard. It happens. I ended up w/permanent neuropathy because I didn't want to have to postpone treatments--just wanted it over with, so I didn't tell them about the symptoms. Joke's on me, though. I had to stop after 9 treatments and still have the neuropathy. So you're right to have told them & stop the oxaliplatin. Those metals do a number on your nerves, so just go with the 5FU/Leucovorin and whatever else they can dream up. Two to go!
Hugs,
Kirsten0 -
Thanks all.........kmygil said:It happens....
So sorry, Buzzard. It happens. I ended up w/permanent neuropathy because I didn't want to have to postpone treatments--just wanted it over with, so I didn't tell them about the symptoms. Joke's on me, though. I had to stop after 9 treatments and still have the neuropathy. So you're right to have told them & stop the oxaliplatin. Those metals do a number on your nerves, so just go with the 5FU/Leucovorin and whatever else they can dream up. Two to go!
Hugs,
Kirsten
Well, I went in today and all they are going to do is the 5fu and the Leucovorin...I still gag when I smell the 5fu off the fanny pack but I have taken the citrus smelling adhesive remover and wiped it on my shirt and under my chin. Now all I smell is oranges, it has helped but I still get a whiff of 5fu evey now and then and it makes me gag....Thats ok. tomorrow a 2 hrs sit then off with the pump Thursday , then 1 more to go......... :-)........yeah, Im smiling BIG TIME......God Bless all of you.....and thank you all again for all of the support you have given me through this.......0 -
Erbitux
My husband Frank had to take Erbitux and it caused acne like sores on his face and back. That was the only side effect he had from it. Don't be upset about having to stop the oxi..Frank did too. They have other chemo that are available. Just hang in there ...two left. That neuropathy is terrible ....I hope it is not permanent for you. You are in our thoughts and prayers.
Hugs,
Frank and Anna0 -
ConstipationShayenne said:I go with the 5fu too....
After my infusion of Avastin and the rest, they send me home with the 5fu pump as well, that I get disconnected after 46 hours as well, but my nausea is not mild with it, please make sure you get some good anti-nausea meds with that, I actually haven't had a side effect like mouth sores or anything either.. when they first push the first 5 minutes of 5fu in me, before starting me on the pump, they make me eat a popsicle or ice chips, which helps supposedly stop the start of mouth sores, and so far has worked. Now, I do have constipation right now which is killing me, so I wonder if that's a side effect, but trying to figure out what to do with that, since the stool softeners don't seem to be working, and I have blood in it from my hemorrhoids...
My husband Frank has alot of problems with constipation since he got his colostomy. In fact while recently in the hospital he had a terrible problem. They gave him the stool softener twice a day, along with Miralax...it can be mixed with anything...he took it twice a day in the hospital but now just once a day. Miralax, his gastro doctor told us, is the same a GoLytly which taste so terrible. He says Frank can take it more than twice a day ..there is also some presc medication called amateza ...which the dr said is like a torpedo to constipation. They also gave Frank two enemas with molasses and milk mixed together. It sure did work...we had never heard of it or knew that an enema can be given through a stoma of a colostomy. Hope this helps.
Hugs,
Anna and Frank0 -
the smellBuzzard said:Thanks all.........
Well, I went in today and all they are going to do is the 5fu and the Leucovorin...I still gag when I smell the 5fu off the fanny pack but I have taken the citrus smelling adhesive remover and wiped it on my shirt and under my chin. Now all I smell is oranges, it has helped but I still get a whiff of 5fu evey now and then and it makes me gag....Thats ok. tomorrow a 2 hrs sit then off with the pump Thursday , then 1 more to go......... :-)........yeah, Im smiling BIG TIME......God Bless all of you.....and thank you all again for all of the support you have given me through this.......
for me, it was much worse when I was only getting the 5FU and Leucovorin as well. 10 1/2 down, 1.5 to go! You are so short I can barely see you!
mary0 -
Thank You!amcp said:Constipation
My husband Frank has alot of problems with constipation since he got his colostomy. In fact while recently in the hospital he had a terrible problem. They gave him the stool softener twice a day, along with Miralax...it can be mixed with anything...he took it twice a day in the hospital but now just once a day. Miralax, his gastro doctor told us, is the same a GoLytly which taste so terrible. He says Frank can take it more than twice a day ..there is also some presc medication called amateza ...which the dr said is like a torpedo to constipation. They also gave Frank two enemas with molasses and milk mixed together. It sure did work...we had never heard of it or knew that an enema can be given through a stoma of a colostomy. Hope this helps.
Hugs,
Anna and Frank
Yeah, I called my doctor today who recommended Miralax and some laxatives for me, I put it in an orange drink, and there was hardly any taste at all, I took it this morning, so still waiting on the "outcome" lol...I never heard of that molasses and milk though, I'll definitely have to try that as well! thanks so much for the help!
Hugsss!
~Donna0 -
Erbitux
Sorry to hear that but it's not uncommon to have to stop because of numbness. I think I had to stop my last one or two also (that was 4 1/2 years ago so I'm not exactly sure) With the Erbitux you may get a rash on face and torso (which means it's working, but if you do not get it that doesn't mean it is not working, just remember that) Also, since you may only be on it for 2 doses you may escape that side effect. Another one is splitting fingertips, sort of like paper cuts and your skin (mainly hands) just gets all cracked. I've tried many creams and lotions but it seems to come from the inside out. But, like I said earlier you may escape this if you are not on it long. I've been on it for over 3 years and it still seems to be keeping things at bay. I didn't really have much trouble with diarrhea, I was more plugged up. Often the Erbitux is given with CPT11 (irinotecan) that one is a PITA.
I hope all goes well for you Buzz, keep us posted.
-p0 -
Straight 5fu and leucovorin........PhillieG said:Erbitux
Sorry to hear that but it's not uncommon to have to stop because of numbness. I think I had to stop my last one or two also (that was 4 1/2 years ago so I'm not exactly sure) With the Erbitux you may get a rash on face and torso (which means it's working, but if you do not get it that doesn't mean it is not working, just remember that) Also, since you may only be on it for 2 doses you may escape that side effect. Another one is splitting fingertips, sort of like paper cuts and your skin (mainly hands) just gets all cracked. I've tried many creams and lotions but it seems to come from the inside out. But, like I said earlier you may escape this if you are not on it long. I've been on it for over 3 years and it still seems to be keeping things at bay. I didn't really have much trouble with diarrhea, I was more plugged up. Often the Erbitux is given with CPT11 (irinotecan) that one is a PITA.
I hope all goes well for you Buzz, keep us posted.
-p
Thats it for the last 2... no nausea though thank God but I did lose my coffee when I smelled the 5fu when I stepped out of the truck at home...I also wear dentures so they had to come out also. They aid in the "gag" syndrome......If it doesn't get any worse than this on nausea I am gonna have 2 last treatments that will be a breeze...Well excuse me I have to go put on some more citrus adhesive remover wipes so I don't smell the 5fu....tahnks again everyone and God Bless......gonna be a bigggggggggg party in 2 weeks.... :-)0 -
used the citrus today during chemoBuzzard said:Straight 5fu and leucovorin........
Thats it for the last 2... no nausea though thank God but I did lose my coffee when I smelled the 5fu when I stepped out of the truck at home...I also wear dentures so they had to come out also. They aid in the "gag" syndrome......If it doesn't get any worse than this on nausea I am gonna have 2 last treatments that will be a breeze...Well excuse me I have to go put on some more citrus adhesive remover wipes so I don't smell the 5fu....tahnks again everyone and God Bless......gonna be a bigggggggggg party in 2 weeks.... :-)
Buzzard,
I brought tangerine bath gel today to chemo & breathed it while being hooked up and while being unhooked. It does help, but I still get a little nauseated if I get a whiff of the alcohol or chemo. Definitely not as bad as without the citrus gel, though.
Sorry to hear you're having such a bad case of nausea.
The countdown is on!!0 -
Erbitux rash doesn't always mean it's working
I had heard that one too- that if you get a bad rash, that means it's working. I had a horrible acne rash- I probably had a thousand tiny pustules on my face, jaw, scalp, behind and in my ears- awful! My oncology office said it was the worst they'd ever seen. Bad enough that I still have the dark marks and even looks like I'll have a few permanent pock marks (it's now been 5-1/2 months since I stopped it). I was one of the unlucky ones who was put on it without first being k-ras tested. I tested positive for the kras mutation after I had already been on it for 5 weeks, so stopped taking it at that point. Testing positive means that Erbitux will not help me at all, as you probably know- but yet I still got that nasty acne rash anyhow. It's my theory that they just came up w/ that to help encourage people who had awful acne from it- at least that's now what my oncologist is saying. Not to discourage you, but just make you aware.0
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