Questions about YOUR side effects to FOLFOX
Comments
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Oxaliplatin
PP... as you know, everyone is different and their side affects/reactions are different. So don't, for a minute, think you should just suck it up and suffer to that high of a degree because others don't seem to have the problem. The last thing you want to do is take on a poison such as this in such a dosage that it does some serious permanent damage to you. I had 9 out of 12 dosages of the Oxi before we stopped and to this day (20 months later) I still have pretty severe neuropathy in my feet and up my shins... to the point where I do not feel confident when I walk that I'm not going to fall. It's possible I should have stopped the Oxi earlier, or at least cut back on the dosage... but like an idiot, I did not tell my onc at the time until I couldn't stand the neuropathy/pain. I just thought that was a normal side affect.
I had a horrible sensitivity to cold for about 5 days of each 2 week cycle. The usual not being able to drink cold/cool drinks and not being able to take anything out of the fridge. Even with gloves on my hands, just sticking my hands into the fridge, the cool air on my arms froze my arms. I think I mentioned elsewhere the one morning taking the dog out and a block from home my throat froze because of the cool morning air.
When my onc said that for the last three treatments we wouldn't do the oxi, I was concerned that I might be putting myself in danger of recurrence because of missing the three oxi treatments. But she assured me that would not be the case... that the 5FU/Leucorvin did 3/4 of the work anyways and the fact I did have 9 out of the 12 dosages was pretty darn good and the Oxi would be in my system for some time.
So, do what your body is comfortable with... and if it can only take a much smaller dosage, then so be it.
Hugggggs,
Cheryl0 -
cal and mag
I am so sorry that you are in such pain from the OXY. **** starts Folfox next week so we don't know what it will be like for him.
I think I posted this before but I don't remember. Also, I don't know if this is standard so I hope I'm not putting something out there that everyone does anyways but if it helps 1 person I guess it is good.
From Dr. Lenz' blog. I know **** will be getting mag and cal before and after each oxy dose.
Aloha,
Kathleen
Can Magnesium and Calcium infusion help with Neurotoxicity
Posted on 09:32AM (EDT) on 2008-03-10
You may remember the press release last year about the Concept Trial which indicated that the patients who received calcium and magnesium infusion appeared to have lower response rates than patients in the control group.
Oxaliplatin can cause significant neurotoxicity which usually presents as numbness and tingling sensations which can lead to problems buttoning shirts or even walking. Oxaliplatin can also cause cold sensitivity which often lasts 5-7 days but depending on the length of therapy can last much longer.
Oxaliplatin is a chelate (molecular structure) and can bind away calcium and magnesium in the body. The nerves have calcium dependent channels used for transporting the nerve activity. When this calcium is bound away the nerves don't function as well and can cause what we call cold sensitivity or parasthesia.
When oxaliplatin is given for a longer period of time, the neuron (the cells which grow the nerves) can die because of the chemotherapy and this causes the lasting numbness and tingling. But it's not only the nerves which are harmed, many patients experience cramps in their legs or hands which can be a sign of low calcium and low magnesium levels.
After the press release warned that calcium and magnesium infusion may harm, everyone stopped the infusion despite having noticed that is seemed to help in the clinic.
At a recent meeting the final efficacy data were released showing that there is no harm with calcium and magnesium infusions prior to and after oxaliplatin. Its effectiveness in preventing neurotoxicity will be reported in June at ASCO 2008. I have started using it again since many patients feel that it is better with the infusions.
If you are treated with oxaliplatin, please discuss with your oncologist the use of magnesium and calcium infusion to prevent neurotoxicity. He can also measure the levels in your blood stream to make sure you are not too low.
Check out my curriculum of past blog posts as well as much more important information on colorectal cancer.
HJ Lenz is a licensed practitioner of Medical Oncology who has been engaged by Revolution Health. No information in this blog is intended to diagnose or treat any condition. The opinions expressed here are my own and do not necessarily reflect those of Revolution Health.0 -
thanksKathleen808 said:cal and mag
I am so sorry that you are in such pain from the OXY. **** starts Folfox next week so we don't know what it will be like for him.
I think I posted this before but I don't remember. Also, I don't know if this is standard so I hope I'm not putting something out there that everyone does anyways but if it helps 1 person I guess it is good.
From Dr. Lenz' blog. I know **** will be getting mag and cal before and after each oxy dose.
Aloha,
Kathleen
Can Magnesium and Calcium infusion help with Neurotoxicity
Posted on 09:32AM (EDT) on 2008-03-10
You may remember the press release last year about the Concept Trial which indicated that the patients who received calcium and magnesium infusion appeared to have lower response rates than patients in the control group.
Oxaliplatin can cause significant neurotoxicity which usually presents as numbness and tingling sensations which can lead to problems buttoning shirts or even walking. Oxaliplatin can also cause cold sensitivity which often lasts 5-7 days but depending on the length of therapy can last much longer.
Oxaliplatin is a chelate (molecular structure) and can bind away calcium and magnesium in the body. The nerves have calcium dependent channels used for transporting the nerve activity. When this calcium is bound away the nerves don't function as well and can cause what we call cold sensitivity or parasthesia.
When oxaliplatin is given for a longer period of time, the neuron (the cells which grow the nerves) can die because of the chemotherapy and this causes the lasting numbness and tingling. But it's not only the nerves which are harmed, many patients experience cramps in their legs or hands which can be a sign of low calcium and low magnesium levels.
After the press release warned that calcium and magnesium infusion may harm, everyone stopped the infusion despite having noticed that is seemed to help in the clinic.
At a recent meeting the final efficacy data were released showing that there is no harm with calcium and magnesium infusions prior to and after oxaliplatin. Its effectiveness in preventing neurotoxicity will be reported in June at ASCO 2008. I have started using it again since many patients feel that it is better with the infusions.
If you are treated with oxaliplatin, please discuss with your oncologist the use of magnesium and calcium infusion to prevent neurotoxicity. He can also measure the levels in your blood stream to make sure you are not too low.
Check out my curriculum of past blog posts as well as much more important information on colorectal cancer.
HJ Lenz is a licensed practitioner of Medical Oncology who has been engaged by Revolution Health. No information in this blog is intended to diagnose or treat any condition. The opinions expressed here are my own and do not necessarily reflect those of Revolution Health.
thanks for the responses.. i do get the calcium and magnesium..but i know there are others that haven't gotten it, so definitely good info to post here... i think for while it was controversial but now studies have shown the benefit. My doctor said in her experience, the men have tolerated the OXY much better than the women. Must be some enzyme they have or something. One of the ladies i go to chemo with has had such a hard time with it, she was getting an ileus an ending up in the hosp after each treatment for like 5 days. they finally figured the oxy was causing neuropathy of the bowel. nasty drug it is. I wish i knew the percentage of how many people actually complete the full dose of all 12 treatments. I wonder how many even know if they have had a reduction. I know in my cancer center most people don't ask they just go with whatever the doctor decides to do.. and i know i should too, but i just don't want to look back with regrets. I had my surgeon that pretty much gave me a death sentence with a T1 and 1 node of 26, then i had 2 mayo oncs that said i caught i early and my case was low risk for recurrence, then i get local oncs that give me 95%+ chance of DFS at 5 years, and think i only need 8 treatments of 5fu, then another second opinion onc that says i am high risk for recurrence because of the 1 lymph node so i should have 12 cycles of Folfox plus radiation with continuous 5 fu it's like GEEZ!! who do you believe???0 -
frustratingpolarprincess said:thanks
thanks for the responses.. i do get the calcium and magnesium..but i know there are others that haven't gotten it, so definitely good info to post here... i think for while it was controversial but now studies have shown the benefit. My doctor said in her experience, the men have tolerated the OXY much better than the women. Must be some enzyme they have or something. One of the ladies i go to chemo with has had such a hard time with it, she was getting an ileus an ending up in the hosp after each treatment for like 5 days. they finally figured the oxy was causing neuropathy of the bowel. nasty drug it is. I wish i knew the percentage of how many people actually complete the full dose of all 12 treatments. I wonder how many even know if they have had a reduction. I know in my cancer center most people don't ask they just go with whatever the doctor decides to do.. and i know i should too, but i just don't want to look back with regrets. I had my surgeon that pretty much gave me a death sentence with a T1 and 1 node of 26, then i had 2 mayo oncs that said i caught i early and my case was low risk for recurrence, then i get local oncs that give me 95%+ chance of DFS at 5 years, and think i only need 8 treatments of 5fu, then another second opinion onc that says i am high risk for recurrence because of the 1 lymph node so i should have 12 cycles of Folfox plus radiation with continuous 5 fu it's like GEEZ!! who do you believe???
How frustrating to have so many different opinions. I think you're wise to know what and how much is going into your body. You know your body and pay attention to it better than anyone else. If you are keeping track, you can spot trends and figure out options for yourself. I know that the docs are the ones to give the meds, etc.... but we have found that dealing with docs and our special needs daughter over the past 12 years we, as her advocates, are the ones who make things happen. Good for you for keeping on top of everything. I really hope you get some relief.
Aloha,
Kathleen0 -
Oxy--CherylHutch said:Oxaliplatin
PP... as you know, everyone is different and their side affects/reactions are different. So don't, for a minute, think you should just suck it up and suffer to that high of a degree because others don't seem to have the problem. The last thing you want to do is take on a poison such as this in such a dosage that it does some serious permanent damage to you. I had 9 out of 12 dosages of the Oxi before we stopped and to this day (20 months later) I still have pretty severe neuropathy in my feet and up my shins... to the point where I do not feel confident when I walk that I'm not going to fall. It's possible I should have stopped the Oxi earlier, or at least cut back on the dosage... but like an idiot, I did not tell my onc at the time until I couldn't stand the neuropathy/pain. I just thought that was a normal side affect.
I had a horrible sensitivity to cold for about 5 days of each 2 week cycle. The usual not being able to drink cold/cool drinks and not being able to take anything out of the fridge. Even with gloves on my hands, just sticking my hands into the fridge, the cool air on my arms froze my arms. I think I mentioned elsewhere the one morning taking the dog out and a block from home my throat froze because of the cool morning air.
When my onc said that for the last three treatments we wouldn't do the oxi, I was concerned that I might be putting myself in danger of recurrence because of missing the three oxi treatments. But she assured me that would not be the case... that the 5FU/Leucorvin did 3/4 of the work anyways and the fact I did have 9 out of the 12 dosages was pretty darn good and the Oxi would be in my system for some time.
So, do what your body is comfortable with... and if it can only take a much smaller dosage, then so be it.
Hugggggs,
Cheryl
PP--
Your side effects sound quite yucky!! I must have been very lucky to finish all 12. I finished in December after 2 different 1 week delay for low platelets. I will try to summarize my side effects in a list form, easy to read.
throat sensitivity and hoarse sounding voice--up to 5-6 days after treatment
neuropothy in hands and feet--nothing that gloves and socks can't help with
eye pain when first tear would come--wow did it hurt, after the first it was ok.
neuropothy in the roof of my mouth (numbness)
fatigue--slept for 2-3 days after treatment, tired for at least 5 days...no way could I have worked at the same time.
low neutrophils---lots of neupogen shots (5x after each treatment)
low platelets
Lots of hair loss...no wig, but hats all the time.
Neuropothy may be improving somewhat. I still feel numb in the fingertips and feet are more sensitive to cold floors now, but both are tolerable.
Hope it gets better for you..0 -
my oxi side effects
Hi,
Your side effects definitely seem to be on the more severe side. I would be careful in taking any more oxy- you don't want the neuropathy too severe (it seems like it's been very severe so far), as it could be permanent, or partially permanent. My neuropathy got to the point where my hands would cramp up and I couldn't hold things well at all- I was always dropping things and I couldn't hold a pen to write at all for a while.
Every once in a while my throat would close up while eating, which was definitely scarey.
Most of my neuropathy was in the hands and feet. I'm glad to say today, a year later, the neuropathy in my hands is gone, but I still do have it in my toes and balls of feet (although the feet were worse before, so they've definitely had improvement also).
Feeling cold all the time was awful & it was painful to try to touch anything cooler than room temp. I constantly was "warming" my hands up in front of a little ceramic space heater. Getting my hands cold equated to pain. The pain in the hands would get better as my hands warmed up.
My overall side effects of Oxaliplatin:
hoarse voice for about 4 days
being tired
being cold
neuropathy- hands and feet, sometimes throat
I had other side effects, but I think they were from the other things I took:
bloody noses- from the Avastin
high blood pressure- from the Avastin
peeling, sore, and darkened hands and feet- from the 5FU (I also get from the Xeloda I'm currently taking, which is the oral form of 5FU, but not as severe as with the 5FU)
Someone in another post mentioned sneezing. I definitely had that issue- I'm not sure if it was from the Oxi, Avastin, or 5FU.
Everyone's different- talk w/ your doctors and nurses- take what you can, but I wouldn't put your nervous system in more peril by taking more Oxi, if I were you.
Best wishes and God bless-
Lisa0
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