foxfox day 4
Comments
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1 Down - 11 to Go
Lou
Don't get too hung up on the 12 treatments - the truth is that most people do not finish all 12 treatments due to the severe neuropathy and the toxicity of the Oxaliplatin.
Some people make all 12 and walk away with few effects...some do their 12 and walk away with lifetime side effects....and many only due so many before they are taken off the drug - again from all of the effects and toxicity.
It's a tough drug. The effects cumulate over time. The thing I want you to watch out for is the neuropathy - the tingling in your hands and feet. Keep your onc updated with any changes in how these are feeling.
Doing the Oxy is sort of like playing Russian Roulette - each time you pull the trigger on a cycle, the side effects could become permanent. Somwhere around treatment #8, really be aware. Studies have shown that the percentages are incremental for success between 8-12 and those last few treatments are where things "could" become permanent. And once done, it is done and you can't go back.
Also, keep an eye on your blood platelet counts - they should be above 100,000 in order for them to do an infusion cycle. Your onc knows this and now you do too, and this info will be important to monitor during your bloodwork.
I only did 8 myself, before we stopped.
One last thing, if you get to where you can't tolerate cold liquids when you have something to drink, you can ask for MAGNESIUM SULFATE to be infused. This really helps with the neuropathy and allows you to have something cold to drink without the associated pain with it. It does not work for everyone, but if it were to work for you, it will make your treatments easier to tolerate.
OK, not trying to scare you, but just keepin' it real, as that's what I like to do. It's not a game, it's serious business and I like to keep it that way when talking to you.
Having said that, I hope you continue to do well and will support you throught your walk through this.
Go get 'em!
-Craig0 -
Magnesium sulfateSundanceh said:1 Down - 11 to Go
Lou
Don't get too hung up on the 12 treatments - the truth is that most people do not finish all 12 treatments due to the severe neuropathy and the toxicity of the Oxaliplatin.
Some people make all 12 and walk away with few effects...some do their 12 and walk away with lifetime side effects....and many only due so many before they are taken off the drug - again from all of the effects and toxicity.
It's a tough drug. The effects cumulate over time. The thing I want you to watch out for is the neuropathy - the tingling in your hands and feet. Keep your onc updated with any changes in how these are feeling.
Doing the Oxy is sort of like playing Russian Roulette - each time you pull the trigger on a cycle, the side effects could become permanent. Somwhere around treatment #8, really be aware. Studies have shown that the percentages are incremental for success between 8-12 and those last few treatments are where things "could" become permanent. And once done, it is done and you can't go back.
Also, keep an eye on your blood platelet counts - they should be above 100,000 in order for them to do an infusion cycle. Your onc knows this and now you do too, and this info will be important to monitor during your bloodwork.
I only did 8 myself, before we stopped.
One last thing, if you get to where you can't tolerate cold liquids when you have something to drink, you can ask for MAGNESIUM SULFATE to be infused. This really helps with the neuropathy and allows you to have something cold to drink without the associated pain with it. It does not work for everyone, but if it were to work for you, it will make your treatments easier to tolerate.
OK, not trying to scare you, but just keepin' it real, as that's what I like to do. It's not a game, it's serious business and I like to keep it that way when talking to you.
Having said that, I hope you continue to do well and will support you throught your walk through this.
Go get 'em!
-Craig
So Craig, does the magnesium help with the cold sensitivity or the neuropathy for some people?
Catherine0 -
Catherine:)C Dixon said:Magnesium sulfate
So Craig, does the magnesium help with the cold sensitivity or the neuropathy for some people?
Catherine
You bet it does - and it's certainly worth a try. I was able to go home the night of the infusion and have cold drinks without those horrible pains. And it helped with my cold sensitivity as well...I could grip cold objects without gloves for much longer period of times. All in all, it was a blessing. My onc had listened to me when I was telling him the symptoms and one day, I noticed a new bag on my tree and asked about it. Nurse said it was "The Mag."
Sure enough, my world turned over and I talk about this all the time, because if it does work for you, Yee Haw! And if it does not, it was worth the effort to try it.
I've had several people via PM and publically on the board acknowledge that they tried this after reading some of my posts about it and they were thrilled with the outcome.
It just makes Folfox a little more human:) And we can all use that one!
See you, Catherine and take good care!
-Craig0 -
OK Lou
I am so glad that you decided not to take your break from the board. Welcome back. I have been keeping track of you since I had a feeling I might be starting FOLFOX myself. I am counting on you to blaze the trail for me now. I will be following behind you and appreciate the insights. I hope my dog can wait 12 hours to go out if I take a nap! Maybe I'll hide the water bowl.
Thanks for the updates. 0 -
CraigSundanceh said:1 Down - 11 to Go
Lou
Don't get too hung up on the 12 treatments - the truth is that most people do not finish all 12 treatments due to the severe neuropathy and the toxicity of the Oxaliplatin.
Some people make all 12 and walk away with few effects...some do their 12 and walk away with lifetime side effects....and many only due so many before they are taken off the drug - again from all of the effects and toxicity.
It's a tough drug. The effects cumulate over time. The thing I want you to watch out for is the neuropathy - the tingling in your hands and feet. Keep your onc updated with any changes in how these are feeling.
Doing the Oxy is sort of like playing Russian Roulette - each time you pull the trigger on a cycle, the side effects could become permanent. Somwhere around treatment #8, really be aware. Studies have shown that the percentages are incremental for success between 8-12 and those last few treatments are where things "could" become permanent. And once done, it is done and you can't go back.
Also, keep an eye on your blood platelet counts - they should be above 100,000 in order for them to do an infusion cycle. Your onc knows this and now you do too, and this info will be important to monitor during your bloodwork.
I only did 8 myself, before we stopped.
One last thing, if you get to where you can't tolerate cold liquids when you have something to drink, you can ask for MAGNESIUM SULFATE to be infused. This really helps with the neuropathy and allows you to have something cold to drink without the associated pain with it. It does not work for everyone, but if it were to work for you, it will make your treatments easier to tolerate.
OK, not trying to scare you, but just keepin' it real, as that's what I like to do. It's not a game, it's serious business and I like to keep it that way when talking to you.
Having said that, I hope you continue to do well and will support you throught your walk through this.
Go get 'em!
-Craig
I asked my onc about possibly having cal/mag infused with the FOLFOX to help with those possible side effects and he didn't feel it was beneficial. I had done a bit of research on it and thought that he might have been a bit dimissive about it. Do you think that taking the Magnesium sulfate orally might be beneficial? I was waiting to fill my script for antibiotics and they had a buy one get one free deal on both the Calcium and Magnesium so I picked them up just in case. My calcium levels have been very low recently so I needed that anyway.0 -
The MagSundanceh said:Catherine:)
You bet it does - and it's certainly worth a try. I was able to go home the night of the infusion and have cold drinks without those horrible pains. And it helped with my cold sensitivity as well...I could grip cold objects without gloves for much longer period of times. All in all, it was a blessing. My onc had listened to me when I was telling him the symptoms and one day, I noticed a new bag on my tree and asked about it. Nurse said it was "The Mag."
Sure enough, my world turned over and I talk about this all the time, because if it does work for you, Yee Haw! And if it does not, it was worth the effort to try it.
I've had several people via PM and publically on the board acknowledge that they tried this after reading some of my posts about it and they were thrilled with the outcome.
It just makes Folfox a little more human:) And we can all use that one!
See you, Catherine and take good care!
-Craig
My onc, bless his soul, automatically ordered "The Mag" for me.
Unfortunately, I'm not one it works for. It took 7 days to finally be able to drink something cool, and the more Oxi I have, the longer it takes, last time was 11 days, before I could have a cool drink.
I'm just mentioning this for the ones it doesn't work for, don't be disappointed, sometimes, we're just not the lucky ones.
I am glad however, for those it does work for.
Keep spreading the word Craig!!!
Love ya buddy,
Winter Marie0 -
Hi Lori:)Lori-S said:Craig
I asked my onc about possibly having cal/mag infused with the FOLFOX to help with those possible side effects and he didn't feel it was beneficial. I had done a bit of research on it and thought that he might have been a bit dimissive about it. Do you think that taking the Magnesium sulfate orally might be beneficial? I was waiting to fill my script for antibiotics and they had a buy one get one free deal on both the Calcium and Magnesium so I picked them up just in case. My calcium levels have been very low recently so I needed that anyway.
First, nice to meet you...I've been following your story and keepin' up.
Your question is a good one - and I honestly don't know the answer to that one. I can't see how it would hurt to try it though. I want to say I remember someone taking that orally at one time and had some good effects.
But, you know what I'd do?
I'd tell my onc that I wanted to try "a round of the Mag" and see how it works for me, or not. You'll know right away whether it's a go or not. If you can come home and drink something cold without feeling like an electric shock, you will be good. \
The problem with oncs is they think know all of it - the sad part is they never have done this (not even 1 treatment) themselves. So, I don't think he can say with any accuracy whether it's beneficial or not. Only you can tell him that - after you've tried it for yourself.
He shouldn't balk about this - one time should tell you what you know...and believe me, Lori, if it does work, you'll be thanking the lucky stars! I've had too many people contact me and tell me it worked for them. And it sure might for you....give it a try!
And keep me posted - make me feel good to know if this worked for you or not. I just pass it along from my experience and love it when other folks can benefit from that.
You take care and it's good to meet you and will see you around:)
-Craig0 -
while i didnt have Oxy, iAnneCan said:Good luck Lou!
Sorry you've had side effects. I hope you feel better soon!
while i didnt have Oxy, i had Cisplatin. The relationship between the two are they grew up from the platinum family and Cisplatin is the Older Uncle from the early 1970's and Oxy is the nephew from the 1990's, both have rather mean and evil ways about them. i think of cisplatin as a Hells Angel biker with spikes in its boots, leather jacket, a burly and sandpaper rough demeanor who lives off the land. Oxy is not as crude or raw but is a off rode 4 wheeler who likes to leave it tracks wherever it clears a path.
Oxaliplatin is a third-generation platinum-based drug that is used predominantly for treatment of colorectal carcinoma.0 -
Emend
Emend was my miracle drug. It didn't take away all of the nausea, but it helped enough to get me through. Please ask for it for your next cycle. They give you a dose by IV at the start of your infusion, and then you have one pill to take at home on day #2, and one for day #3. (My situation is beyond usual protocol so I take one more on day #4.)
Rest as much as you need to. Drink LOTS AND LOTS of fluids. Very important - all side effects are exacerbated if you get dehyrated.
Hang in there. One down! Eleven to go. Before you know it you will be 1/2-way. And they can keep tweaking to make it more tolerable for you. They can cut the 5-FU bolus, reduce dosages, cut down the oxy and/or eventually cut it out. You do as much as you can handle, but cut back to where you can tolerate it well enough to get through to #12.
Make a list of your side effects each day, and their severity. Take it in to your next onc appt, before you get your next tx.0 -
INTERESTINGSundanceh said:1 Down - 11 to Go
Lou
Don't get too hung up on the 12 treatments - the truth is that most people do not finish all 12 treatments due to the severe neuropathy and the toxicity of the Oxaliplatin.
Some people make all 12 and walk away with few effects...some do their 12 and walk away with lifetime side effects....and many only due so many before they are taken off the drug - again from all of the effects and toxicity.
It's a tough drug. The effects cumulate over time. The thing I want you to watch out for is the neuropathy - the tingling in your hands and feet. Keep your onc updated with any changes in how these are feeling.
Doing the Oxy is sort of like playing Russian Roulette - each time you pull the trigger on a cycle, the side effects could become permanent. Somwhere around treatment #8, really be aware. Studies have shown that the percentages are incremental for success between 8-12 and those last few treatments are where things "could" become permanent. And once done, it is done and you can't go back.
Also, keep an eye on your blood platelet counts - they should be above 100,000 in order for them to do an infusion cycle. Your onc knows this and now you do too, and this info will be important to monitor during your bloodwork.
I only did 8 myself, before we stopped.
One last thing, if you get to where you can't tolerate cold liquids when you have something to drink, you can ask for MAGNESIUM SULFATE to be infused. This really helps with the neuropathy and allows you to have something cold to drink without the associated pain with it. It does not work for everyone, but if it were to work for you, it will make your treatments easier to tolerate.
OK, not trying to scare you, but just keepin' it real, as that's what I like to do. It's not a game, it's serious business and I like to keep it that way when talking to you.
Having said that, I hope you continue to do well and will support you throught your walk through this.
Go get 'em!
-Craig
Very interesting idea on the Magnesium Sulfate, I will certainly discuss it with my Onc. I have tingling in my right thumb and right index finger. These two were the ones damaged the most by Xeloda hand and foot syndrome side-effect. The others are good and my feet that hand and foot syndrome really trashed 4 1/2 years ago are fine so far. The Nausea is okay now and some diarrhea but not bad either. I don't feel 100% but about 75% now. I even went outside with my beagle for a while for about 10 minutes. It's about 55 degrees here but the cold isn't bothering me yet. Thanks again Lou0 -
HelpLori-S said:OK Lou
I am so glad that you decided not to take your break from the board. Welcome back. I have been keeping track of you since I had a feeling I might be starting FOLFOX myself. I am counting on you to blaze the trail for me now. I will be following behind you and appreciate the insights. I hope my dog can wait 12 hours to go out if I take a nap! Maybe I'll hide the water bowl. Thanks for the updates.
I sure will try to help with whatever I can as I go through this maybe a step or two ahead of you. My beagle likes to run the back yard with or without me. She hunts squirrels and rabbits but only to track them kind of like a game. So she entertains herself even when I'm taking a long nap. Eating has been a problem not because everything taste like metal yet but because it just doesn't make me feel better. Well I have until the 25th before they "chemo" me again so maybe improvement will occur before then. Thanks Lou0 -
ElevenKathryn_in_MN said:Emend
Emend was my miracle drug. It didn't take away all of the nausea, but it helped enough to get me through. Please ask for it for your next cycle. They give you a dose by IV at the start of your infusion, and then you have one pill to take at home on day #2, and one for day #3. (My situation is beyond usual protocol so I take one more on day #4.)
Rest as much as you need to. Drink LOTS AND LOTS of fluids. Very important - all side effects are exacerbated if you get dehyrated.
Hang in there. One down! Eleven to go. Before you know it you will be 1/2-way. And they can keep tweaking to make it more tolerable for you. They can cut the 5-FU bolus, reduce dosages, cut down the oxy and/or eventually cut it out. You do as much as you can handle, but cut back to where you can tolerate it well enough to get through to #12.
Make a list of your side effects each day, and their severity. Take it in to your next onc appt, before you get your next tx.
Eleven seems like an impossible number but time will tell. Since I am a reoccurrence I would like to hit cancer as hard as I can. Of course that is the problem for all I know there is no cancer left and this could be for nothing. My original cancer was rectal and different from the colon cancer they took out this time from asending colon. I see what you meant about drinking fluids just doesn't feel good to do. They do give me an infusion of ant-nausea drugs at the start of the Folfox and it works great. It's when I get home after they disconnect the pump that I started feeling miserable. Hopefully this will pass as time goes by until by next chemo. Take Care Lou0 -
Treatment
For me always after getting disconnected was the worse. Just felt like a "icky" switch had been thrown and was bombared with being tired, aching, eye problems, eating problems, cold sensitivity etc. My doctor wouldn't give me the mag/cal so hopefully yours will. Craig says it works really well. Just think about each treatment at a time - not long range. You can do it. Good luck.
Kim0
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